This is the complete text from my Caring Bridge site that my sister helped start up for me.  It covers my pre and post transplant hospital stays, my recovery at home, and a few updates years later.

http://www.caringbridge.org/visit/steveberg

Journal
October 23, 2008
This CaringBridge site was created just recently. Please visit again soon for a journal
update.
October 25, 2008
In March of this year, Steve noticed he was not feeling up to par. He had no energy could
not keep food down and thought at that time it was the flu or something similar. His
condition did not improve and got progressively worse. Unforturnately, he had no health
insurance so he did not seek medical help until in August he could not breath and was
rushed to Hennipen Medical Center in Minneapolis, MN. They discovered he had a large
blood clot in his heart and fluid in his lungs. They did several tests but because he did
not have insurance was released shortly thereafter. He was told to administer shots of
cumidin to himself for the clot. Added to the health problems, Steve was also told his job,
which was a contract job, would be finished and he was out of work. His poor health
preclued his getting unemployment because he was too sick to look for another job.
Finally, he agreed to come to Rockford, IL to let his parents’ handle his affairs. He went
to OSF in Rockford and was admitted immediately. He was diagonsed with advanced
cardiomyopothy and the only solution was to get a heart transparent. He was accepted
at Advocate Christ Medical Center in Oak Lawn, despite his lack of insurance. They have
a history of doing heart transplants but, unfortunately, they did not tell us at the time
that they are not on the list of places to get heart donations because one of their
surgeons left in June and has not been replaced.
October 25, 2008
As of this writing, we are looking to put Steve in another facility, perhaps Northwestern
Hospital in downtown Chicago. There is another possibilty that might buy some time but
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is also considered major surgery. That is to install a pump to assist his own heart. All
options are on the table but none are too good.
October 25, 2008
At about 8 pm Saturday Steve was to be transferred to Northwestern University- Bluhm
Cardiovascular Institute. His best chances of survival will be there.
October 26, 2008
This is Steve writing to update on what Sue has already written.
As Sue mentioned, I was transferred here from Christ Hospital. Instead of riding over on
a helicopter like I did two weeks ago, I was strapped to an ambulance gurnee and driven
to Northwestern. It was kind of cool when they turned on the siren and made other cars
get out of the way.
It’s been tough watching my favorite season of the year pass by through double-paned
windows. When the paramedics found an exit from Christ Hospital, the brief puffs of the
crisp autumn air was like a new drug that drained half the amount of stress I was feeling.
Amazingly, I was in my new bed at NW by 10:30pm.
October 27, 2008
I woke up this morning at around 9:00 feeling just great. I was told that because I was
going to be getting a new Swan catheter (explained below), that they weren’t going to
be giving me breakfast. I asked Valerie (my day nurse), when they were planning on
doing that. When she told me shortly afterwards that it wouldn’t be happening until later
in the afternoon, the doctors cleared me for breakfast.
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I was feeling so good that I ate my breakfast sitting up in the chair by the window. Right
outside my window, I can see what used to be the old VA hospital, which, is being torn
down, floor-by-floor. Quite interesting. I then was able to wash standing up by the sink.
The nurse came in again around 11:00 or so and gave me a couple shots of penicillan.
RIGHT after that, I remember feeling depressed about my weight that was measured
about an hour earlier, (I only weigh 112 lbs! — 30 lbs less than normal.) Then, I
apparently passed out and was unconscious for a couple minutes. The very next thing I
know, I woke up to my nurse 4 inches above my face and yelling my name. There was an
oxygen mask being shoved over my face, and there must have been about 30 people
crowded in my room. That alone freaked me out!
I had never passed out before, but apparently I had stopped breathing and was just nonresponsive!
The nurse believed it was a “vagal reaction” which means there was
something that set off my “fight or flight” instinct. (How I could be more terrified of a
drastic weight loss rather than a helicopter ride is beyond me.)
Anyway, I was fine and I’m still alive to tell about it. I was then scheduled to receive my
4th Swan catheter. I hated the experience, but it was very smoothly done.
When I came back to the room, my parents were here in the room. During the afternoon
I met with Janet the social worker. She asked me 80 million questions and also informed
me that I can also get disability for Austin – which would be used instead of my paying
child support. My dad had no idea that that was an option. She also wanted to know
about how contentious my marriage and divorce were, about my diagnosis for
depression and ADD. (To this day, I believe the trauma of the unexpected and needlessly
uncivil divorce was led to an extreme amount of stress and depression that led to the
weakening of my heart this year.)
My parents stuck around to hear one of the cardiac doctors explain to us the gameplan.
Since I’m still pretty new here, there are still some loose ends that need to be tied up
before they can come to a more firm conclusion on how to proceed. They have several
different approaches than what Christ hospital had. Essentially, he said that they want
me to reach a more stable condition first.
Prayer requests: We were told that in order for me to apply for Austin to receive
disability money from me that we need to get his actual birth certificate. Knowing my exwife,
it will be next to impossible to get her to comply to anything. Please pray that she
won’t make it too difficult.
The “Swan” Catheter is named after one of the inventers of it, Jeremy Swan. It is inserted
into a very large vein in the neck or chest, through the right atrium of the heart, then the
left ventricle, until it finally reaches a pulmonary artery (i.e. a vessel that carries blood to
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the lungs to be “oxygenized”). Because the right side of my heart is also failing, this
catheter allows direct access to the atrium.
October 28, 2008
Summary
Today was less eventful than yesterday, but I did have several people come in, including
a psychiatrist who evaluated me for my psychological readiness for transplant surgery. I
told her I’m highly motivated to stay alive and to be an involved father for my son. She
also told me that it’s going to be important for me to keep my mind active — when she
said I could even do a jigsaw puzzle or latchhook kit, I was pretty happy to hear that. I
told her I had even thought of learning a language.
In any event, I had a few shots and new medications added. My blood pressure is up,
which is actually a good thing. I had the same nurse, Val, as I had yesterday. — These
nurses end up spending so much time with you throughout the day, and you start to
become friends with them and giving each other crap (e.g. Every time I start feeling
faint, I blame her for it).
I’m also learning a TON about cardiac medical care and what’s all involved. I know what
all the numbers on the monitors mean and whether they’re good or bad. I know what all
these medications they’re giving me and what they’re for. It’s pretty interesting.
Finally, outside my window, I can watch the demolition company tearing down the old VA
hospital right across the street. Once the next floor comes down, I should be able to get
a better view of Lake Michigan.
Today’s Events
I’m starting today’s entry early because I don’t want to forget some of the things that
have already happened.
Overnight
Lastnight a Dr. Puthutnama told me that one of the major medications they are giving
me (called Milrinone) was going to be reduced from its original rate of(.66mcq/kg/min) to
a lower rate since Northwestern’s typical practice is not to use Milranone at such a high
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dosage. I’m not sure how far they lowered it, but overnight I had a sharp reaction. My
cardiac index (which is the exact amount of blood in liters that my heart pumps out per
minute, divided by the surface area of my body – there’ll be a quiz on this tomorrow). My
index was down to 1.9 and my blood pressure had fallen all the way down to 69.
10:25am
I was visited by the infectious disease team. There are a couple latent positive tests that
came back that can be easily treated for that they want to treat me for just in case.
At 10:35am
I got an X-Ray (they were having issues with the Swan again and wanted to make sure it
was positioned correctly.)
11:20am
Gail the psychiatrist came in to ask me a bunch of questions to see if I’m psychological
fit to receive a transplant. She wasn’t able to finish because the nurse needed to come in
and take care of my new Swan catheter, which, by the way, since it’s been inserted into
my neck with 80some tubes coming out of it, makes me look like something out of a
horror movie — at least I’m ready for Halloween.)
2:00pm
A nurse came in to give me the other heart medicine called Dobutamine, in my IV. I’ve
got so many medications going into me, I asked the nurse to bring me a list.
3:00
Gail Ostermann, the psychologist came in to speak with me. I had been so sick and tired
of being in bed, that I told my nurse that I wanted to sit in the chair while I talked to Gail.
That was nice. She was really pretty cool and we got along pretty well. She wants to
continue watching me for depression and anxiety, though. (I’m on 75mg of Zoloft).
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October 29, 2008
Summay
First of all, I just wanted to say I’m really touched and humbled by the words many of
you have shared in my guestbook. You are all way too kind!
Secondly, according to the cardiologists, it looks like, because of my drastic reaction to
the decrease in one of the medications the other night, they are leaning towards doing
some type of invasive solution either a Ventrical Assist Device (VAD) or a transplant.
That means, an approach that would entail a medicine/IV only is probably out of the
picture.
Today’s Events:
6:00am
I weighed in this morning at 116 lbs. It’s hard to believe that just one year beforehand, I
weighed 140 lbs and was in really good shape. — (I really miss that townhouse in Eden
Prairie. It’s unfortunate that my ex-wife insisted on taking it away from me and has now
let it go into foreclosure.)
8:30am
I was introduced to my new nurse for the day, Jen. She looks really young.
9:15am
I finally decided to wake up. Jen brought my breakfast over. After I finished, Mary
Georgey somebody, an allergist, asked me a bunch of questions about the incident that
occurred 2 days ago when I passed out after receiving my shots of penicillin. They want
to make sure I’m not allergic to it — I know I’m not.
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12:45pm
OK, so the CHF team was just in here to give me an update. Dr. Puthunaman and a
bunch of other MD’s were here. He told me that the plan is to continue me on a mix of
the drugs, Milrinone and Dobutamine. They want to try and find the right balance
between the drugs so that they can lower the Milrinone down to .50 from it’s current rate
of .66. The fact that I responded so drastically to the lowering of the Milrinone a couple
nights ago, is leading them to lean towards some kind of assistance, either a VAD or a
transplant. The conversation was then left up to the social workers, infectious disease
doctors, and finance people — a conversation that he was not a part of).
2:15 pm
An endocrinologist (Dr. Jared Knol), just walked in my room and asked me a few
questions about my thyroid. One of the hormones produced by the thryroid (there’s two
types, T3 and T4), the T3 is lower than normal. I had never had any problems with my
thyroid before and his conclusion is that it’s the thyroid reacting to my heart condition.
The thyroid is in charge of speeding up or slowing down your metabolism. Since I’ve
been very sedantary lately, it’s actually a good thing that the hormone is lowered.
2:30pm
Another allergist came in to talk to me about checking to see if I’m allergic to Penicillin.
This is beause of the incident where I passed out after I received a couple penicllin shots.
So, they are going to perform a test to see if I’m actually allergic. They don’t believe I am
since my reaction was quite opposite than what a typical allergic reaction to penicillin
would be. (e.g. instead of my blood pressure increasing, it went down; I didn’t have any
rashes etc.)
2:55pm
I spoke to my dad on the phone in order to explain what the current situation is. He also
told me that he informed my ex-wife’s attorney that we are trying to get some benefits
to be paid to Austin. But, I need to be approved first. Evidently he was told, “She really
needs it,” indicating that she’s struggling financially.
3:30pm
Mary, the allergist came into my room to place drops of different parts of penicillin on my
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arm to see if there would be any type of reaction. It took almost an hour, but I tested
negative for having an allergy.
4:30pm
I’m STILL waiting for my ice cream which I ordered at least 3 hours ago! Now it’s almost
dinner time!
12:25am
The rest of the evening was fairly uneventful. I guess that’s a good thing. I had a
voracious appetite and ate multiple dinners. Even though I only weigh 115 lbs (and have
virtually no muscle mass anywhere), I’m eating like a horse. I’m ready for my sleeping
pill, finish my last Sudoku, and fall asleep (hopefully).
October 30, 2008
Summary
This was a great day as it definitely looks like there’s some traction happening on my
case!
This morning, the allergists came to complete their testing to make sure I wasn’t allergic
to penicillin. I’m not.
Then the cardiology swarm descended upon my room. Dr. Puthunaman (that rhymes
with . . . um . . . nothing) told me that my “numbers” having been looking better and
better because of the medicines they’re giving me. They may even be able to move me
out of ICU pretty soon.
I also found out later in the day that it definitely looks like I’m going to be a candidate for
heart transplant and that even within the next couple days, I’ll be placed on the national
heart donor waiting list! I’m so glad now I switched to Northwestern Hospital here in
Chicago. They’re so professional here and really seem like they know what they’re doing!
Please pray that all of the remaining issues get quickly resolved!
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Today’s Events
11:00am
The allergist that was here yesterday (forgot her name), came in today and had to check
and make sure I wasn’t allergic to penicillin.
11:30am
The cardiology team came in and Dr. Puthunaman told me that the additional medicine
(Dobutamine) that they’re giving me while reducing the Milrinone is working. They told
me that they are probably going to be able to remove this annoying Swan catheter from
my neck. (Oh well, so much for the Star Trek alien Halloween costume!)
The other thing I was wondering about and asked was why they didn’t seem so
concerned about the right side of my heart like Christ hospital (where I came from last
week), was. At Christ, that was one of the major concerns before they felt comfortable
proceeding. Here at Northwestern, they’ve hardly mentioned it at all. They said that the
right side’s functionality was so dependent upon the left side’s (the side that is damaged
the most), that they felt it was more important to focus on the left. I guess this is good
news since it’s one less thing that would hold up getting a VAD and/or transplant.
1:45pm
I’ve been getting sick of just sitting/lying in bed all the time, so I asked my nurse (today
it’s Karrie), to let me sit in the chair next to the window.
It’s funny seeing some people come in here with heavy coats on. You’d think it was cold
out or something.
2:00pm
My mom and sister came to visit for a few hours. While they were here, a couple nurses
from the cardiac team came down with information on heart transplants. It looks like the
doctors here have decided that I am a good candidate for a transplant and that I should
be placed high on the national heart donor waiting list. This means, I could have a new
heart as soon as a couple weeks or a couple months.
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4:45pm
A strange little lady armed with syringes, sterile masks and blankets, and cold gel came
in to insert another catheter (called a PICC catheter), that went in through my left arm,
through a vein, and into the vena cava (the largest vein in the body) and resting just at
the top of the right atrium. This is going to replace the other catheter that is in my neck
(the Swan-Ganz catheter), that is going to be removed shortly.
On a lighter note, I think I’m being overfed. While this hospital food is actually really
good, it takes forever for the food to come. So, I’ve been doubling up when I can
(meaning, ordering two entries). Well, wouldn’t you know it, my chicken sandwich came
three hours later and I wasn’t hungry enough to finish it, because dinner was about to
come. So, it just sat there getting cold.
October 31, 2008
This is Steve’s sister Sue .. Many have so very graciously requested donation
information. Without insurance, and Steve’s inability to work he sure is in
need. I have begun to research fundraising information with the IRS. I wanted
to set it up as a 501 c private donation corporation so it will be tax deductible
for the donors and tax free for Steve. As with everything.. I learned out that
that is not CHEAP! It costs about $500 through legal zoom. If anyone knows of
a better, easier way to set up a donation site ,please let me know! At a
minimum I can set up a paypal site however it wouldn’t be tax deductible for
the donors. Thanks for everyone’s support! Sue
——————————————————–
Summary
I found out today from the cardiologists that what I thought I heard them say yesterday
is actually somewhat different than I understood. While it’s true that they are leaning
towards a transplant, it does not necessarily mean that I won’t get a VAD (Ventricular
Assist Device) implanted as a temporary step in the meantime, and, could even be sent
home for a while. I had assumed that the VAD option was off the table and that they
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were going to place me straight on the list and then move me somewhere into a holding
pattern somewhere else in the hospital until a new heart actually becomes available.
Today is Halloween. And, while I’m feeling unusually healthy today, I was having a tough
time realizing that I had no idea what kind of costume my 2-yr-old son was going to wear
tonight.
.
.
Today’s Events
.
8:00am
I was rudely awaken and taken down to get a CAT Scan — something I didn’t know about
until late lastnight. Everyone seemed excited that I was able to get up and move onto
the gurnees and beds all on my own.
11:30am
Only two people from the cardiology team stopped by today and told me everything I
said earlier. I guess in their minds, a work-up toward a VAD and a work-up toward a
transplant are the same thing. According to Dr. Puthumanam, they don’t really
distinguish in their minds between what seem like two very different options: 1) “VAD as
a bridge to transplant” vs. 2) “Direct transplant”.
Evidently, I have become very stable and healthy (except for my heart, of course). This
could either be “good” news or “bad” news.
2:00pm
After lunch, I was eager to get out of the room and go for a walk. I told my nurse and she
gave me some pajama bottoms (“HELLOOOOO?!!! Why am I just being informed of this
now? I could have had these on the whole time instead of looking like a washed up Peter
Pan with my white tights and bright green booties!)
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We then walked around the entire unit, I was able to do 4 laps and passed by a couple of
my doctors, who seemed stunned to see me out of my usual context (i.e. caught up like
a fly in a spider web of IV tubes in my hospital bed). The nurse, Corinne, and I were
discussing what she should dress up for Halloween tonight. I’m glad I was able to quickly
pull my foot out of my mouth when I suggested she should go as Ugly Betty! — I honestly
was not suggesting that she was ugly, but she was looking for an easy costume, and I
thought that would be a real easy, but good one! We got a good laugh out of it.
I can’t say too much about the rest of the day. I think the Zoloft must be working,
though, since I cheered up as the day went on. I must admit, though, I still couldn’t get
Austin off my mind.
November 1, 2008
Summary
It was an extremely uneventful day. Not much to comment on other than that it looks
like I’m back to being put on the National Heart Donor Waiting List, and at the highest
priority possible as soon as early this week.
Also, despite my voracious appetite (I feel like I’m constantly eating), my weight is still
only 115lbs. That’s only 3lbs more than when I got here.
Daily Events
9:15am
I Finally woke up, had my normal double-portion breakfast, and watched an episode of
Frasier.
It’s Saturday. No one’s really around. I’m still stuck down here in ICU. I can’t even watch
the “demolition” crew outside my window pick at the building next door since it’s the
weekend. I don’t know if I’ll be seeing the doctors yet today or not.
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11:15am
My parents called. I really had no more news for them. They told me that Gitta and Jane,
my cousins in Germany, would be flying over next Friday and would be spending a week
here.
11:40am
The Resident doctor here on my case (“resident” means they’re no longer an intern but
are actually in their second or third years as a doctor), Emily SomebodyOrOther came in
and told me that it looked like I would not be moved to a nicer, regular room < . . . sniff
sniff . . .> because I’m on two IV medications instead of just one. She also informed me
that they “absolutely, positively, let there be no mistake about it”, have to be sure that I
don’t have some form of very latent TB hiding somewhere in my lungs just waiting for its
chance to rear its ugly head, especially after the transplant. So, they may be doing some
more testing (one even involving the insertion of a tube down my throat and into my
lungs to collect whatever it is they’d want to collect).
Shortly thereafter, Dr. Puthuruthumahtmaghandirigitoni – me-my-mahoni (not his real
name), came in and gave me the low down from yesterday’s Cardiologists meeting. He
confirmed what the resident had just said regarding moving me to a regular room. What
he told me is that even though I currently look very healthy, it’s deceiving primarily
because I’m very young. In reality, the fact that I’m having to be on two medications,
means I need to be watched much more closely. That means, I’ll be here in lovely room
808 here in ICU for much longer.
On the bright(er) side of things, he also said it looks like the doctors are leaning towards
giving a direct heart transplant and putting me on “The List” very soon. That decision
would probably be made on Tuesday during their “big, big” weekly meeting. At that
point, I would be put back on the pain-in-the-neck Swan catheter (for the fifth time!), and
then on the heart donor waiting list. I would be bypassing the VAD procedure altogether,
and would have to remain here in the hospital until a transplant actually occurred. From
what I know, this would also automatically classify me as a “1A” recipient, meaning, I’m
in the highest priority category. If I were to be listed now, I would be a “1B” candidate,
meaning, I’d have to wait longer. In other words, instead of waiting a few months for a
new heart, it’ll probably only be a few weeks. (More than likely, I’ll be eating
Thanksgiving dinner here in this very room.)
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2:30pm
I told my nurse I wanted to walk around. I was able to walk 7 times around the CCU
today. That beats my record from yesterday which was only 4 laps.
3:30pm
After sitting and reading To Kill A Mockingbird, for a while, my nurse (I had 3 day nurses
today), had to bring me down for a special X-Ray that X-Rayed my jaw. They want to
make sure I don’t have any infections in my teeth.
November 2, 2008
Summary
I suppose one of the biggest lessons I’ve learned through this experience is that the
medical field is hardly an exact science. Also, the practice of heart transplantation is
extremely sensitive. These physicians don’t want to take any chances. I guess, for that, I
should be grateful.
Today was very uneventful. I just sat in my room and was mostly left alone.
Today’s Events
8:30am
I woke up about as soon as breakfast arrived. I forgot that the clocks had to be changed.
I went to bed shortly after midnight, which means I got about 9 hours sleep (interspersed
with interruptions with the staff).
8:40am
The cardiology team came by early this morning already. They told me that overnight I
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had had some abnormal extra heartbeats for a few seconds. It probably happened
overnight while I was asleep. I was totally oblivious. Just because of that, they prescribed
another medication to calm my heart down, since the other meds are making it work a
bit harder.
9:30am
A couple of M.D.’s from Pulmonology came to the room to investigate even further how
dangerous of a threat the supposed exposure to TB I have had. The hospital I came from
tested me positive for it, whereas, here at Northwestern, they’ve been struggling to find
any trace of it. They thought there might have been some indication of it from my CT
scan which they did on Friday. (They found “wisps” of something in my lungs.) They
thought they might have to do a bronchial scopy (something or other) where they’d
actually stick a tube down my throat and into my lungs, but, they don’t think it’s
necessary (whew! got out of THAT one!)
2:20pm
I had been sitting up by the window for a while. I had eaten lunch in the chair. I had been
planning to go around for my daily walk, but, my heart rate while sitting there was in the
120’s and, I felt a little light-headed. So, I decided to try again later.
5:00pm
My friend, Dave Westergaard stopped by to pay me another visit. I decided that that
would be a good time to take my walk. So, Dave and I walked, (actually, sauntered)
around the unit 10 times today. My heart rate remained pretty low (in the 120’s).
7:00
I’m having some trouble trying to determine what I should do with the apartment I have
in Minneapolis. Virtually, all of my possessions are in there. I have a couple renters
already living there, plus, it needs some extensive cleaning and repair. However, I’m
obviously not going to be able to live in MN for quite some time. (How long, that’s one of
the debatable points.) I can only get Illinois Medicaid if I can prove that I’m an ILLINOIS
resident.
I’m not sure that those who disagree with me don’t exactly understand where I’m coming
from. It’m already having an extremely hard time with the fact that I can’t see my son.
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Plus, my whole life is up in Minnesota. I really like living there and have lots of good
friends. I know I’m going through a “life-changing event,” but moving back to Illinois is an
extremely depressing proposition. I’m alone enough as it is.
November 3, 2008
Summary
Here’s today’s update from the men’s geriatric ward (no, wait, the Cardiac Care Unit). I
say that because as I walk around the unit, I mostly only see patients that are really,
really old and lying nearly catatonic in their beds staring mindlessly at the TV.
The biggest highlight of the day was speaking to the head cardiologist here, Dr. William
Cotts. He pretty much just confirmed what I’ve been told so far, which is that the doctors
are all leaning more and more strongly towards getting me on the heart donor waiting
list as soon as possible. They may even be making a decision about that tomorrow.
Today’s Events
8:30am
I woke up this morning to my standard French toast drowned in syrup breakfast. It
shouln’t be too difficult to remember my nurse’s name today, it’s Sara!
10:15am
Gina, one of the heart transplant coordinators who is active on my case and involved in
the daily meetingswith the cardiologists, stopped in my room. I had a few questions for
her. Primarily, I wanted to know how long should I be expected to be in recovery after
the transplant. While she didn’t give any promises, she said that based on her
experience here and statistically speaking, I had a lot of things in my favor for not only
receiving a heart sooner than most, but also recovering more quickly as well.
She said that because of my age, the great condition of the rest of my body and organs,
the fact that my heart is in “end stage heart failure” (based on the fact that I’m on 2 IV’s
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which means, if they place me on the donor list, I would be put on the highest priority
category (1A)), the fact that I have a smaller body type (I’m only 5’5.5″), that I have a
rarer blood type (A+), means that, I could expect a transplant as soon as 5 day’s but that
she would be surprised if I had to wait longer than a month or two.
Also, once the transplant occurs, I could be released very soon afterward. One patient
they recently had, who is only a little bit older than me, was released only 8 days after
transplant. Obviously, that doesn’t mean that’s going to be the case with me, but, it
gives me a good idea of what to expect. (Normal recovery time spent in the hospital is
14 days).
Once I go home, I will need to follow through with all the medications, doctor’s
appointments, and trying as much as possible to get exercise. She said that the recovery
time could be as short as a few weeks or even a few months. I asked her specifically
about being able to live on my own again, and she said that for about six weeks or so, I
will need to have someone living with me and helping take care of me. But that, after
that, I should be able to go back to more of a normal life and even back to work. She
said, “Oh yeah! We encourage people to resume their old lives as soon as possible.”
I’m not sure what this figures out to in terms of a realistic time line for me, but I’m
thinking 3 – 5 months from now.
10:40am
Again, the cardiology team (about 10 people, most of whom I don’t know), including Dr.
William Cotts, whom I hadn’t met yet, came in. He talked to Gina for a few minutes
outside the door before coming in. According to him, it looks like everything is pretty
much set to go. They are leaning towards putting me on the heart donor waiting list
within a couple days. They will be discussing that today in their daily meeting, and then
again tomorrow with the entire transplant team during that meeting. (Gina is part of that
daily meeting, and she promised to stop back again later today to give me an update.)
12:30pm
Gail, the psychologist stopped by while I was eating lunch. We talked a bit about how I’m
dealing with everything and I told her that every morning I wake up feeling sad because
I’m missing Austin so much.
1:30pm
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Clark, the dentist stopped in to take 22 X-rays of each of my teeth. In addition to the
panoramic x-ray they took on Saturday, these X-rays are much more detailed. Who
woulda thunk that you’d need a dentist’s approval before being able to get a heart
transplant?
4:30pm
I went for my daily walk and beat my record from yesterday at 12 laps around the unit.
6:00pm
My double portions of dinner finally arrived, along with TWO packets of BEDSIDE BINGO
cards!
7:30pm
OK, NOW I’m really ticked! Bedside Bingo was supposed to start at 6:30 on channel 34
and was hosted by the hospital volunteers. So, at 6:30 I got out my bingo cards and
changed the channel to 34. Well, 6:30 came and went. 6:45 came and went, and still,
only a blank blue screen on the TV. (<sigh>) I ended up watching a re-run of Seinfeld
and throwing my unused bingo cards back on my dinner tray to be bussed away. I also
complained to the nurses and told them that the volunteers needed to be fired!
November 4, 2008
Summary
It was election day today. I didn’t bother to vote, not that I’m not patriotic, but, both
Minnesota and Illinois are dyed in the wool blue states. Also, I’ve got some greater issues
at hand. I’m actually only a few blocks away from Grant Park where the Obama
celebration party is going to happen. It should be interesting to watch the riots outside
my window.
Anyway, according to the doctors doing their rounds this morning, they would like to
wean me off one of the “drips” I’m on and are considering moving me out of ICU onto a
regular floor. That is both good and bad news. On one hand, I’ll get to be in a nicer room,
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but on the other hand, I’ll be placed lower on the donor waiting list.
Daily Events
11:15am
Dr. Cotts and several of his cardiology interns/residents crammed into my room. His
primary concern involved follow-up. He specifically asked me if I could stay in the area
for about a year (meaning, NOT move back to Minnesota). I asked if Rockford was too far
away, and they all said absolutely not, it was not too far.
11:45pm
Again, Gail the psychologist stopped by to see how I was doing. It was reassuring talking
to her as she helped clear it up in my mind that this was a life-changing event and that
I’d better plan accordingly. It’s tough just taking all of this in. My entire future is up in the
air again. But, I need to remember, this is not about me, right?
She TRIED to reassure me by telling me, “Basically, you’re just trading one disease for
another; Congestive Heart Failure vs. Suppressed Immunodeficiency.” When I asked her
what that meant, she said, “Read your book.” (I wanna know where this woman got her
license to practice!)
12:15am
I called my parents to tell them that the decision whether I should move back to MN or
stay here in IL had been made. I also found out that my ex-wife and her lawyer are
continuing to bug my dad about getting my life insurance. Apparently, there was
mention in it the divorce decree, but, I’m clueless as to what she could possibly be
referring to. I absolutely DO NOT have a life insurance policy anywhere. (She’s actually
claiming that I’m “hiding” money there!) I still can’t conceive the heartless cruelty and
contempt on her part. She’s left me totally distitute, denied me access to my son, and
wants to maintain her dream life-style of only working part-time. (I’m sorry to be
sounding off here on this site about this, but I feel so, so, duped and truly believed I had
married someone who meant her marriage vows and wouldn’t allow ME to use the “D”
word. “God, I pray that whatever bitterness in my heart will die and be thrown out along
with it.”)
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6:00pm
I wrote an email to the Executive Pastor at Wooddale Church in Minnesota. This was the
church I was married in and attended for a few years. Since several people have
expressed interest in contributing to my cause, I am hoping that Wooddale would set up
a fund that people could contribute to financially on my behalf. Let’s hope and pray they
agree to it.
8:00pm
During the nurses’ “Changing of the guard,” I overheard them talking about me.
Evidently, and, according to what Dr. Cotts said earlier today, they are planning on trying
to wean me off of one of the IV medicines I’m on. This would make me suitable to be
relocated on one of the regular floors. While this is good news because I would much
rather be in a nicer room, it means I would be placed in a lower priority category for a
heart donor.
10:00pm
< sigh >
November 5, 2008
Summary
I was officially placed on the national heart donor waiting list today! I’ve been
categorized as a 1B, which is a step lower in the priority categtory (1A) being highest.
HOWEVER, I’ve been moved to well, the luxury suite of hospital rooms, (sort of); with two
pleather chairs, a mini-couch that folds out to a bed for guests, a nice full and private
bathroom, actual doors, and a cherry-wood storage unit! — I still can’t find the
refrigerator and microwave, though. (Maybe they’re hidden behind the red infectious
waste box . . . )
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Daily Events
10:15am
Dr. Cotts came in while I was reading my handy-dandy heart transplant notebook. BIG
MISTAKE!! I learned that AFTER the surgery, not only will I be restrained in my bed when
I wake up, but I’ll have tube inserted through my mouth to help me breathe, a tube
inserted in through my nose, stainless steel wires holding my ribcage together, drainage
catheters coming out of my chest and bladder, and more tubes in my arms and neck. I
think I’d rather be put in a 3-day coma!
Anyway, Dr. Cotts told me the next step was going to be putting me on the donor waiting
list and moving me to a regular room (not ICU). While I like the idea of moving to a nicer
room (with its own bathroom), it also means my placement on the list will be lower.
However, Dr. Cotts thinks that given my blood type and smaller size, and the fact that
I’m still in the hospital, the difference between a 1A and 1B priority candidate is minimal.
2:30pm
I decided to for my daily walk around the CCU unit. I was able to walk 7 times around
today.
3:30pm
Liz, the transplant coordinator, called me and told me that everyone would like to place
me on the national heart donor waiting list and she asked my permission to do so. I gave
her a very affirmative answer! She said, “OK, that means that from this point on, I could
start getting calls.” This means, in regards to my case, as soon as potential hearts
become available that are possible matches, she will be contacted.
I’m not sure what category I’d be placed in, but, it seems that I’ll be near the top of the
list because of my age, smaller body, and the fact that I’m on two drips.
Now, it’s just a waiting game!
10:20pm
I was moved from the ICU floor up to a regular room. Even though I have two drips going
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into me, they thought I could handle it in one of the less monitored rooms — which, are
definitely a whole lot nicer.
November 6, 2008
Summary
Daily Events
8:15am
I woke up in my new room today. Ho-Hum. Breakfast had been sitting on my tray since
7:30. It felt so good just to sleep.
10:30am
Liz, the transplant coordinator came in and brought me the letter stating that I had been
placed on the United Network for Organ Sharing (UNOS) national transplant waiting list.
My status is “1B” (meaning, I’m just one step lower than those who have a status of “1A”
11:30am
Dr. Cotts and crew came by just to check up on me. No change in plans. No one give me
an answer as to how long I can expect to wait. (ARGHHHH!)
12:30pm
Dr. McGhee and the two transplant coordinators walked in. This doctor is the actual
transplant surgeon. He just came in to tell me how important it is that I take my
medications after I get out of the hospital. He then let it slip that the average life
expectancy after a heart transplant is 13 years! 20 years longer is in the 75 percentile.
Eventually, the new heart will go into failure, too. I may do a “re-transplant”, but the
other issue, is that immune system is going to be suppressed, making me more
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susceptible to other diseases. Needless to say, I didn’t exactly take this as good news.
On the other hand, it’s the best option open to me.
November 7, 2008
Summary
All right, totally against my better judgment, but, not really having any other choice . . . I
resorted to parting my hair after washing it today. It’s just growing too long and I didn’t
have $25.00 to spend on a barber from the Volunteer group.
I had some visitors today including my parents and old friend from the past, Julie
Sandercock, who totally surprised me!
No real news on the medical front. Dr. Cotts (head honcho here), said they MIGHT
consider having the Swan catheter re-inserted in me sometime next week and then
move me back in ICU. This would automatically move me up in priority to “1A” from “1B.”
Daily Events
8:15am
I woke up, ate my usual French toast breakfast.
9:30am
Dr. Cotts came in real quick. He sat down in the mauve pleather chair and it looked as
though he was self-conscious and flustered about how to make “small talk.” (I’ve noticed
that it’s pretty tough for brainiacs to know what to say in social settings.) We exchanged
a couple-half-completed jokes followed by mutual nervous laughter. He encouraged me
to walk the halls a few times a day. He also indicated that they might want to more
directly monitor my heart by inserting another Swan catheter in my neck, and move me
back down to CCU. While this would place me higher on the waiting list, I’d be stuck
wearing that stupid catheter. — I’m just going to ride it out.
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10:30am
After thinking that the banquet of pills I take every morning at 10:00 in the morning
must be responsible for raising my heart rate, I decided I’d better go get one of my daily
walks in before I would get too short of breath. I walked five times around the floor.
12:30pm
I’m not sure what’s wrong with these people! I’m still getting double-meal portions. My
appetite has returned to normal and I just can’t finish all the food they’re giving me.
1:15pm
My parents stopped to visit. They drove in to pick up my cousins from Germany, Gitta
and Jane at 5:00. I actually really enjoyed our time together. I walked them over to the
family area which has a nice view of the John Hancock building, Water Tower Place, and
the Hilton Hotel where our next President and Vice-President were speaking. When we
walked back to the room, I didn’t realize how much I was in-demand. A couple nurses
had no idea where I was.
My dad and I talked a lot about how my ex-wife and her lawyer are just refusing to let up
on me. They actually believe that I’m hiding money somewhere! (I guess this really isn’t
the venue to discuss this topic — hence, my upcoming book!)
4:30pm
Soon after my parents left, this guy from Northwestern University who’s doing this
research project wanted to know if I wanted to participate in this “Cardiac Surgery
Outcomes Registry” — which is basically going to be used to track my post-surgery
progress in order to provide the collected data for further research that can be used to
improve cardiac treatment in the future. While I certainly want to contribute as much as I
can to medical science, allowing my medical records to be released to these researchers
that I don’t know, can be a little unnerving.
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November 8, 2008
Daily Events
2:00pm
The only real excitement I had today was having my German cousins, Gitta and Jane,
come and visit with my mom and dad.
I’ve been feeling fantastic lately, and walked around the unit 15 times.
Fortunately, my mom brought me some t-shirts to take the place of the ugly hospital
gowns I’ve been wearing for so many months now. So, instead of looking like frompzilla,
I at least look semi-normal.
7:20pm
I decided to interrupt the movie I was watching, As Good as it Gets, in order to walk the
halls again. I’m supposed to walk around 3 times a day. This would be my
second. Feeling pretty good, I was able to make the trip in 10 laps! At about the eighth
lap, my night nurse (who’s been here 3 nights in a row now), yelled out at me, “Oh now
you’re just showing off!” I simply responded by sticking my tongue out at her.
As I was walking around, I was observing all the artwork on the walls. It all looks like
splotchy mixes of Norman Rockwell and scenes from Little House on the Prairie. It’s
certainly nothing enticing or even memorable, but, I suppose I wouldn’t want to see
Dante’s Inferno or The Scream hanging on the wall.
9:00pm
All right, so I may have just permanently damaged my reputation on this floor. My nurse
walked in and she had a pair of brown socks with her. I asked if I could have them
because the sky blue ones I’ve been wearing don’t match the rest of what I’m wearing
now. I couldn’t understand her sudden outburst of laughter and saying, “You just made
my day. If you look at my socks, they probably never match.” — I have to blame this
self-consciousness on my friend, Clinton Ohlers. He was/is constantly concerned about
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making sure his clothes match. Whatever, I feel a lot better.
November 9, 2008
Summary
I’M GETTING A NEW HEART TONIGHT!!!
Daily Events
10:00am
Dr. Cotts came in while I was still sleeping. (I’ve been going to be bed pretty late every
night, thanks, Sue!). He had no news for me so I just didn’t ask any questions.
12:30
Gitta and Jane, my German cousins, stopped by again, but by themselves. We played
this game of trying to understand each other. I brought them over to the family waiting
area, which has a much nicer view than what I can see.
10:50pm
Liz, one of the heart transplant coordinators, just called. She just told me that they found
a donor! She said that I must have higher up on the list than she thought and that this
heart does not look to be high risk at all. So, now I’m just waiting to be moved to another
room on the 7th floor, 711. It probably won’t be until 4:30 before they actually move me
to the operating room.
For the next couple days, I will be virtually unconscious and unable to communicate.
Please send any questions/comments to my sister Sue at her email address:
suebautz@aol.com
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November 9, 2008
I Just received a call from Steve!
They have a heart!! He will be in
Surgery overnight/morning.
prayers welcomed!
Sue
November 10, 2008
Steve has been in surgery since 5 am. Dr. reports that his new heart is in and is pumping
well! He also said after getting the opportunity to see the old heart was indeed in very
poor condition. It was misshapen and not pumping well at all. Please keep checking back
for updates .
November 10, 2008
Steve came out of surgery at about 11 AM.
The heart continues to pump well with only a couple mis steps.. He is still on the
breathing ventilators and is still under the anthesthsia. Hopefuly he will get much
needed rest before he wakes up to his new life.
Sue
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November 10, 2008
We left Steve a couple hours ago- Unfortunately he has no interest in waking. ( Who
would with all the contraptions he is hooked up to) He does not control much of any part
of his body right now. The Dr’s expected him to stir after 3-4 hours and it’s been about
9.5. Otherwise his vitals seem stable. We tried desperately to wake him and
let him know him pulled through but other than a half eyelid
blink and a .25 second blank stare.. we got nothing much.
He is being closely monitored and we came home to get some much needed sleep
before we head back. He was so scared before the surgery, my biggest fear was that he
would wake up without his family around him.
November 11, 2008
Good Morning everyone-
Steve has made it through the night! woo-hoo (why are the nights always so scary?) He
is still not responding to their attempts to wake him. He just wants to sleep. He is still on
the ventilator and looks like he did post op. We are praying for some great strides to be
made today.
I would also like to thank my aunt for posting our message of eternal gratitude to this
donor family. I can’t imagine what pain they are currently experiencing. I do hope that
they will allow our family to personally thank them someday. I know Steve would like to
as well. I can’t imagine how the words Thank you will ever be enough.
November 11, 2008
Going in for a cat scan. He should be more responsive by now.
November 11, 2008
Thank God the Cat Scan came back ok. He did not have a stroke or lose brain function.
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The doctors became very concerned of this due to his inability to arouse for 27 plus
hours. At this point they believe his body’s way of dealing with his extreme pain is to
shut itself down and go to sleep. They just removed the ventilator which should help
immensely. He is able to nod and shake his head to yes or no questions.
November 12, 2008
Before I begin reporting on today’s events: I want to request help of Steve’s Minnesota
friends. Our dad, Aunt and I are coming to Minneapolis to move Steve’s
belongings to Rockford. We need help loading a truck!
He has to live with my parents for the next year or so while he recovers and also
because he has to come to downtown Chicago twice per week to be monitored for
donor heart rejection. He has an apartment on Cedar View Dr in Minneapolis.(55405) We
need volunteers to help pack and load the truck. Please email me at suebautz@aol.com
if you can help this Saturday afternoon. Thanks! Sue
Steve is doing much better today! They had him sit in a chair for an hour or so today. He
was very hungry and was able to eat some chicken and rice. He is in quite a bit of pain
and sitting in the chair really wore him out.
The Surgeon stopped in to let us know that the heart is still doing well. They will have
physical therapist come in tomorrow to teach Steve some bed excercises to help build up
his strength. Steve seems really confused about most things. He couldn’t understand
why he had such a big scar on his chest. He also couldn’t understand why they gave him
lunch after breakfast. Huh? He spent quite a bit of time trying to figure that one out. 🙂
He also thought we said one of his nurses was drunk (he wasn’t) so he kept asking his
new nurse if she was drunk and if that’s why the other guy had to leave. It must be the
morphine.. At least he provides entertainment albeit unintentional.
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November 13, 2008
Not much new today with Steve.
He was moved to a new room again. See info to the right. 🙂
He is going to start his physical therapy today which doesn’t consist of much more than
sitting in the chair, standing up and shoulder rolls. With Heart surgery the biggest hurdle
is the feeling like your chest is going to blow open when you cough or move. Steve is
struggling with that but his new heart is working great. He will have a pacemaker for a
while until the nerves to the new heart can figure out what signals to send. It’s really
amazing, it’s like they have to get to know each other before the can work together well.
🙂
The doctor was also telling us of other phenomenons he has seen or heard of including
liking or disliking foods that used to be favorites of Steve’s or the donor. That would be
so odd.
November 14, 2008
I didn’t get in to visit Steve today but my aunt Jan and Cousin Connie did. They said he
was doing well and wasn’t too loopy. He’s been sitting in his chair. (which is considered
exercise) for him. Tomorrow we are all going to bring his belongings to IL. He will
officially be an IL resident once again. Welcome back to IL Steve!
Maybe he can run for Governor! We need a good one! 🙂
November 16, 2008
I REALLY REALLY want to THANK Steve’s friends Terry, Scooter, Denise , Kristin and Barb
in MN for helping us load Steve’s things onto the truck. We would not have been able to
handle all that ourselves in just one afternoon!
We made it back to IL at about 1 AM. Now, we just have to figure out where to put all
Steve’s stuff..:)
Steve has spent much of his life in school always pursuing something and MAN has he
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accumulated a lot of books!
Once again , our deepest gratitude goes out to Steve’s friends !
THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
November 17, 2008
Steve sounds pretty weak and tired today. They did a biopsy on his heart to determine if
there is any sign of rejection at this point. Apparently this means he has to “starve” as he
puts it. 🙂 .
Steve has been putting on weight which is good. He was down to 112 pounds a few
weeks ago. He put on
about 15 pounds which is great as long as it’s not water retention. He mentioned once
again how thankful he is for those who helped him move and also for everyone’s
thoughts and prayers as his recovery begins. He also wanted me to mention that he is
happy to have visitors anytime.
If you want to visit Steve but would like info on visiting hours and where to park , etc..
please feel free to email me at suebautz@aol.com and I can give you the info.
Thanks everyone!
November 17, 2008
Steve’s biopsy didn’t come back all that fabulous. 🙁
On the scale of none, mild, moderate and severe levels of rejection
Steve is in the moderate level of heart rejection. They are moving him back to CCU. I will
post a new room number as soon as I know what it is.
Please pray for Steven once again. Hopefully the doctors can
reverse this rejection quickly.
31 / 236
November 19, 2008
Steve has been moved yet again. They are going to do an echocardiogram. The right
side of his heart is now not pumping like it should. They aren’t sure why but it may be
due to acute rejection. Dr’s have dramatically increased the anti rejection drugs and
these drugs cause Steve to shake uncontrollably. He appears very tired as he keeps
falling asleep on his company. 🙂
November 19, 2008
Two times now here at Northwestern, I have woken up to a big-haired woman two inches
from my face calling my name.
The first time was after I my code blue call when I passed out on my hospital bed and
totally stopped breathing.
The second time occured just last week when I when I finally woke up after being asleep
for 27 hours and saw my
cousin from Germany standing directly over me mentioning my name over and over
again, “Alles Klahr, Steve. Du hast
enien neues herz!”
At 10:30pm, on Monday the 10th, I got a call from Liz the cardiac transplant coordinator.
All she could do is tell
me that the donor’s condition was good and showed no signs of high risk factors and was
generally a good match. I
was totally flummoxed because I was more or less expecting a much longer waiting
period of, 3 weeks being the
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average.
I was a nervous-wreck going into the surgery, but I do have days better than others. As I
was finally being
strapped up to a gurnee, my family having drivin in from from Rockford had been there
since 1:00am. Unfortunately,
they didn’t rovide the kind of entertainment I was counting on them for during the last
possible 5 hours of my
life!! Yeah, real loving and kind of you people! (OF COURSE I’M TOTALLY, TOTALLY
KIDDING!)
When it comes time for all the white-masked people to stop yelling my name into my
face in order to “take me away,
ha-ha, ho-ho, he-he!” To the great, big sterile, stainless-steel operating room, lights
comparable to mini-suns
hung randomly in the room. More and more people entered the room as it gradually
faded into the distance. “Why
are these people so happy and consoling — treating me like a little kid — I guess, they did
ease my pain and
suffering a bit.
What I was so paranoid of was exeriencing the pain and suffering AFTER the surgery.
When someone asked me what the
date was and the first thing I muttered was “July . . . ah, 8th . . . and then he rudely had
the gall to insinuate
that I might be wrong!! I let my eyes follow me back to the one of the great white lights
and just let it take me
away.
It was 27 hours later before I saw the day of light again. I STILL had no idea how much
time had passed. I didn’t
even realize that a whole day had even passed. When I woke up, there were two large
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breathing tubes inserted don’t
my throat, a-bile-filled tube coming out of my nose, an oxygen tube placed OVER my
nose, a catheter in my neck, a
urinary catheter, an IV wrongly placed in my wrist, stomach tubes coming out of my
chest and stomach to “lap-up”
excess fluids, and then, of course 80 leads attached to wires glued onto my chest
reading my blood rate and such.
Were someone to ask what day I thought it was, I would have guessed Wednesday, not
Thursday like it really was! My
“loving” family took it upon themselves to take several pictures of me in my wretched
state. Sue said I looked
like a bug splatted against the windshield. I guess I couldn’t provide a better description.
The day 1 and day 2 pictures are quite telling. I should have them uploaded shortly!
November 19, 2008
Please see Steve’s story below as only he can provide that prospective.. however in
defense of “the family” we spent our time laughing at pictures while waiting for the heart
transplant and Steve ASKED that those photos be posted on his facebook page. 🙂
November 20, 2008
We didn’t get in to see Steve today but he seems pretty sad today. Thinking about
spending the Holiday in the hospital. He was hoping he would he home by then.
The Dr’s are still trying to figure out which cocktail of medicine will be right for Steve.
They need tofigure out the meds needed to balance donor rejection with sufficient
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immune system to live outside a bubble. 🙂
At this point the heart is still not functioning perfectly in Steve. The have some additional
“getting acquainted” to do..
November 20, 2008
– I apologize for the delays in getting my updates out. One of the temporary medicines
they’re giving me, a steroid of some sort, causes severe shaking in my hands and legs,
making it a challenge to write or type.
– I’m still down in the Surgical Cardial Care Unit, where I was brought right after they
discovered the rejection. Now that they believe they have reversed the rejection by
balancing my body chemistry, (It’s ALL about the chemistry, man!), I should be moved
back upstairs to one of the nicer rooms next week.
– I’m due for another biopsy tomorrow sometime (blech). That means I can’t eat or drink
starting at midnight tonight. It also means lying still in the catheter lab for an hour while
being probed and poked.
– I’ve still got a lot of fluid built-up that they want mt e to get rid of. So, they’re shoving
down a ton of this drug called Lasix, which is a strong dirutetic, which is forcing my body
to do just that. That also means, I can only drink up to 1500mL a day — which is probably
half of what I’m used to taking.
– I’m still bummed, though. The doctors can’t give me a timeline or prognosis, so, I may
be spending Thanksgiving here in the hospital!
– I have slept 60 days straight in a hospital bed as of lastnight.
– Things that were my salvation today: walking the unit with Paul, the PT guy, Getting
Gail’s, the psychologist, bi-weekly chewing out for my persistent complaining, having
Amanda, the Occupational Therapist, give me a new grabber toy, Sudoko.
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November 21, 2008
– My day was mostly spent in a hungry, dry mouth, tired stupor. I had to fast until they
got me finished up with my biopsy. They came to get me at around 9:30am. They did the
biopsy; I fell asleep and the pain and discomfort wasn’t that bad.
– The purpose of the biopsy (which is where they stick a catheter through a large vein
which goes up to the heart, where they scrape off a very small piece of the new heart) to
analyze it directly in the lab.
– After I got back to my room, while I was still in my daze, a couple guys thought they’d
be sneaky by moving the catheter that has been in the right side of my neck, to the left
side.
November 22, 2008
– It’s Saturday morning, but, that hasn’t prevented me from scanning the tv channels for
programs shown only during weekdays.
– Dr. McConnell stopped in and confirmed that the biopsy from yesterday looked good.
He also told me that the next biopsy would be next Wednesday.
– This means I won’t be home for Thanksgiving. But I guess my parents will be driving in
to spend the day with me.
– My sleep habits have been thrown off whack again. Since I’m still not sleeping through
the night, I end up catching naps throughout the day. I just sleep whenever.
– I’ve been feeling more pain and lethargy since that last biopsy. These electrodes keep
pulling on my chest as does the new catheter placed underneath my clavicle.
– I’ve spent 65 total days in a hospital bed now since August 14.
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November 23, 2008
– First of all, I wanted to say THANK YOU, THANK YOU, THANK YOU for all your notes of
encouragement that you have posted here and on Face Book! It really helps my day go
by.
– Secondly, I set up pledge drive (see following link) so that we can pay the necessary
costs involved in setting up a 501(k) charity on by behalf. Please feel free to check it out
at your earliest convenience.
http://apps.facebook.com/causes/fundraising_pledges/24027?m=814b0121
– The doctors are encouraging me to get up and walk some more. So, I had the nurses
take me on three separate walks today.
– I’m still on my fluid restriction because I’ve been retaining water quite a bit. That
means having to go thirsty and being put on all kinds of medicines that dry me out. It’s
pretty frustrating.
– Being that it was Sunday, there wasn’t much going on. The pain has become much
more constant and intense.
November 24, 2008
Well it was just a matter of time before I accidently erased some of Steve’s journal. In my
good hearted effort to post a link into the journal I managed to screw it up and erase
today’s entry from Steve. I will leave it up to my technologically inclined brother to figure
out how to post a clickable link and then reconstruct his daily entry. In the meantime. I
ask those that are willing and possibly able to help Steve with his medical costs by
cutting and pasting this link to bring you to an account that has been set up for him.
Every dollar counts and is VERY MUCH APPRECIATED!! The initial $500 is needed and has
to be used to set up up a 501c corporation to make the money tax deductible for donors
and tax free for Steven. THANK YOU!!!!!!!!!! Here is the link: https://www.paypal.com/cgibin/
webscr?cmd=_s-xclick&hosted_button_id=1401867
Not sure if Steve will actually make it home by Thursday but that is the “talk” now.
I have updated his address at the right to reflect that of our parents where Steve will
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stay for the next year during his recovery. Please also see the link in the my story to help
out Steve financially if you can. As many may know this was a surprise to everyone and
Steve was stricken with this condition while unemployed and uninsured. If you can
please help. We are just as grateful for messages and prayers..Thank you!!!!
Sue (Steve’s sis)
November 24, 2008
This ever-moving target that is my “release date” is on the move again. Now it
looks like I may not be released until Thursday (Thanksgiving day) morning.
This morning (as with every morning), I am rudely awakened to have
blood drawn — I find it a bit suspicious why this is always done just
shortly before sunrise. A smiley nurse bounds into my room, flips on
the light, and announces, “Good Morning! I’m here to draw some of
your blood!” She then proceeds to extract a satisfactory amount from a
conveniently placed catheter in my neck. That reminds me, I’ll have to
double-check the cast of characters for the movie Twilight that just
came out.
In any event, that lab test showed that my blood is thickening too fast
and needs to be thinned out. So, I was placed on another Heparin drip
this morning.
This also triggered another test called a venous duplex, which is a
doppler (i.e. ultra-sound) view of my neck and left arm where they
suspect there may be another clot. This has been scheduled for
tomorrow, along with the biopsy.
Because of these complications, the cardiology team wants to examine
the biopsy results before letting me go.
The soonest this would be is Thursday morning — which is totally fine
with me since I’d rather play things safe rather than take any
unnecessary risks like letting me go home just for the sake of
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Thanksgiving.
I’ve been passing a lot of my time away by trying to figure out how to hack into
Facebook and use it as a development platform to design and create my own
Facebook pages and applications.
I also found out that I tested positive on another test. This test shows whether I
have or am carrying a bacteria called, “Vancomycin Resistant Enterococci.” It is
an extremely mild thing, but simply means that if an infection develops, the antibiotic
drug called Vancomycin won’t have any affect on me. So, while the nurses
and anyone who would enter my room and haves to make contact with me has
to wear a yellow, protective gown so that they don’t spread it to other patients.
This does not apply to any visitors, however. But, since this is the first time I
tested positive for this weird bacteria, it looks as though it must have been
transmitted to me here in the hospital (i.e. via direct contact with another
person, bedside tables, thermometers, blood pressure cuffs, etc.)
November 26, 2008
I’ll let Steve share the details of the latest issues with you but I guess he won’t make it
home for Thanksgiving. 🙁
November 26, 2008
I had three major events today, as well as news that I would NOT be going back to
Rockford (i.e. home) tomorrow.
First, I had to fast lastnight and this morning because I had a biopsy scheduled
for tloday. I was to be second in line. Well, true to form to hospital living, the
transport guy didn’t show up until noon. It was a mixed blessing that he came.
While it was the inevitable portal I needed to go through in order to ever eat or
drink anything anymore, I HATE going through these procedures! Luckily, it was
all over-with before I knew it since they knocked me out pretty good.
.
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After that, I was brought back up to my room and tried to get as much sleep as I
could. But, that always ends up being a useless endeavor. While I was
attempting to eat lunch, the transplant coordinators gave me instructions on all
the meds I’m going to be taking home with me. (I think I counted 16.)
.
At 3:30, the transport guy showed up to take me downstairs again for a “venaus
duplex” This was a doppler test on my right and left arms/shoulders to check for
clots (i.e. thrombis). Well, I asked the technician if he happened to see anything
and he acknowledged the existence of the two thrombises in the left arm that
we knew about, but then he also found another new clot on the upper right arm
as well.
.
While I was getting my next procedure done, (an echocardiogram), one of the
doctors came in and told me that based on a preliminary look at the biopsy,
they found that the pressures on the right side of my heart (i.e. the blood being
pushed from my right artery up through the pulmonary artery). This is going to
entail a couple more days in the hospital.
.
I don’t mean to make it sound like I’m complaining or anything, “Hey! at least
you’ve got a new heart!” It’s just that this ordeal is a lot like trying to make my
way through a maze blindfolded, with hecklers in the bushes telling me one
thing and then the next one telling me something totally different. That’s
actually one of the success factors that Northwestern attributes to their cardiac
program. While they are committed to sending patients home as soon as they
can, they won’t do so (holiday or not), unless they feel totally confident that
you’re ready to do so. In fact, I felt a bit relieved when they told me I needed to
stay here longer. Truly, I am grateful for God’s generosity and the way my
family and friends have all come together to support me.
November 27, 2008
It’s Thanksgiving today. I wish I could say it was a fantastic day, but it was pretty
depressing. After trying to recuperate from my parents’ (particularly my dad’s) brief visit,
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I went to take a walk but was only able to make it around the unit once. Some of the
things he said were extremely upsetting and personal. I ended up causing a scare here
on the floor. For no other apparent reason, I experienced a brief moment of arrhythmia
and my heart rate jumped up to over 150bpm. A few nurses rushed in, but I had pretty
much calmed down by then. Nevertheless, my nurse had to page my doctor who told
them to put me on an IV drip of Magnesium and to take an unscheduled EKG. Hopefully
this incident won’t set back my release date (now planned for Monday).
.
As is to be expected, there wasn’t much going on here since it was a holiday. I doubt
tomorrow will be any different.
Happy Thanksigiving everyone!
November 28, 2008
Today I have been in the hospital for exactly 70 days.
I have been gaining a couple pounds each day for the past 10 days or so. Since
last Wednesday, I have put on about 13 pounds. Evidently, it’s water weight
that I’ve noticed has started to fill my legs, much like a sponge. I think it may be
caused by all the steroids I’m being given.
.
My Cardiac Failure doctors stopped in this morning as they do every morning.
There aren’t really any updates, except that he (Dr. O’Connell), wants to take
me off one of the drips (Dobutamin). They put me BACK on this med earlier this
week, which resulted in some negative effects, so it was immediately added
again. At some point, I’ve got to get off the stuff because I can’t go home on it.
.
I found out that my Ejection Fraction Rate (as measured by the echocardiogram
I had on Wednesday), is all the way up to 65%. My old heart was only at 5% –
15% before the surgery.
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November 29, 2008
This entire weekend is turning out to be pretty uneventful. So, I’ll start out with a funny
story a nurse told me while we were walking the halls!
.
She once had a young patient who had never really experienced hospitalization
before. The nurse had told him to let her know whenever he needs something or
whenever something happens. Evidently, he took her words too literally. He
used his nurse call line which goes directly to the nurse’s station. The speaker
phone was on as everyone who happened to be around heard the kid’s voice
say, “I farted.”
.
I’ve been gaining a lot of weight — I weigh 15 more pounds today than I did last
week! It’s primarily water weight. The steroids I’m taking are causing it, and, the
doctor does not seem that concerned. But, I weigh more now than I have in over
10 years!
.
I’m supposed to be taken off the last IV drip going into me today. It’s almost
10pm and it hasn’t happened yet.
November 30, 2008
This has been a pretty good day. My usual routine is to go to bed around 12 or 1 and
then I get woken up at habout 5:00am to get my vital signs taken. I usually don’t bother
falling back to sleep because at 5:30am, a big scale gets rolled into my room attached to
my Primary Care Technician that I had had all night long. Without having much time to
come out of the shock after seeing how much weight I’ve gained since the previous day,
the XRay lady barges her way into the room pushing a 7-foot mobile X-Ray machine at
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the end of the bed. Soon after that, my nurse comes in to drown me in a myriad of pills,
shots, and blood draws. At 7:30ish, breakfast arrives.
Dr. O’Connell is eager to get me out of the hospital. He told me today that I’m
scheduled for an echocardiogram tomorrow and then a biopsy on Tuesday with
a target release date on Wednesday.
My weight has been increasing by a pound or two every day. I think it’s because
I’ve picked up this self-destructive habit of eating all the food put in front of me.
December 1, 2008
My weight keeps going up and up. Every morning at 6:00am, I get weighed. Today I
topped off at 150lbs! That’s 30lbs more than I weighed prior to going into surgery 3
weeks ago.
I’ve got a new cardiologist who’s taking over. She’s pretty young and her name
is Dr. Monpetit. She came in this morning and I told her how weak I’ve become.
How my legs don’t have the muscle mass to support my body when I’m walking.
This is due to the drug called “Prednisone” that they’re giving me. This is an antirejection
drug that I wouldn’t be able to live without. However, it causes me to
retain water. It’s been congregating in my legs and gut.
So, here’s the logic:
.
I have to be on the Prednisone (a steroid), in order to suppress my
immune system so that my body doesn’t reject the new heart.
.
The Prednisone also causes weight gain in the form of water retention.
This is a bad thing because the new heart was selected to support the
size and weight of a person that was more or less the same as me. It
also makes me more prone to blood clots. So, I’m being given a diuretic
called Lasix; 80mg 3 times a day.
.
The Lasix, while it forces the water out, it also forces several
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electrolytes to come out as well. So, in order to offset the effects of the
Lasix, I’m being given these huge horse pills to restore all of the
potassium I’m losing as well as magnesium.
.
I have finally been taken off all the IV drips. This makes it easier to walk the
halls, since I’m currently very weak.
December 2, 2008
Unfortunately Steve will not be coming home as soon as a tomorrow. In fact, they are
moving him back to ICU right away. I don’t have all the information yet but his heart is
just not behaving. I heard through our mother that the “pressures” are too high in his
heart.
December 3, 2008
· Instead of packing up to go home yesterday, I was being packed up to be transferred
again to ICU. Based on the biopsy I had yesterday, they found out a couple things that
concerned them:
o First, my heart rate is actually too slow. So, they added a new drug to raise that.
o Second, although it’s apparently nothing to worry about, there is some mild rejection
of the new heart.
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o Thirdly, I have gained a significant amount of weight (30lbs) since my surgery. Even
though it’s all water, my new heart is not used to having to support that much weight.
o Fourthly, the weight gain is causing some abnormal pressures to build up in the right
side of my heart.
· Because of all this, they put me on heavier dosages of diuretics (i.e. pills that make
you go potty.) And, because it’s in an IV form, they wanted me to move down to the ICU
again where they can watch me much closer.
· You probably wouldn’t think there would be much drama inside the walls of a hospital. But,
in accord with what the nurses say, there are patients who are just beastly. Right now, there’s
an older woman yelling her head off, asking for help and for someone to call the police. She’s
carrying on like she’s being held hostage. I heard her poor nurse cry out, “She’s driving me
nuts!” My nurse was just in here and she told me that the lady was having a hallucination.
· So, instead of setting dates for my release, the guessing game has turned into a
shrug, in fact, almost a joke.
December 4, 2008
This was anything but a boring day. Hardly a day I’d want to live over again, but
certainly interesting. Basically, I lost the ability to not only walk, but also to stand.
· Mysteriously, overnight, my legs (especially the left one), have become extremely
sensitive to pain. Whenever someone even just touches them, I cringe in sharp pain.
When Paul, the physical therapist came by to walk with me, I was shocked to find out
that my leg muscles couldn’t support my body weight. My shaking has also become
much worse. So, when I tried to stand up, I couldn’t do it. I needed help getting up and
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holding onto Paul who only guided me over to the chair.
· I was able to sit in the chair for a few hours just fine. But, I apparently attracted the
attention of several specialists who were concerned about my legs and shaking. I had
just been assuming that the shaking was normal and to be expected and would diminish
over time. The people that had an interest here were endocrininologists, heart failure
team, rheumatology, neurology, etc.
· So, spread out across yesterday and today, numerous doctors came through to
check it out. Cardiology ran an echcocardiogramX, rheumatology ran an MRI this
morning. And neurology hasn’t figured out what they want to do.
· Just after dinner time, my nurse recruited some additional help who were able to get
me back into bed (A simple matter of stand, pivot, step back 1 foot, and sit down). I
certainly wasn’t expecting the intense pain, followed by the screaming and crying, and
outpour of sympathy.
I ended up spending the rest of the night in bed working on my updates on CaringBridge and
Facebook.
December 5, 2008
I had another somewhat interesting day. Again, lots of testing, flushing, visitors, and pill
interruptions. After all these specialists dropped by my room, to check out the
impending earthquake, I thought I finally had a chance to get some sleep, so I rolled over
with a short-lived smile on my face in the bed to catch up on the sleep I’d lost over the
night.
· Immediately, my delightful nurse popped her head into my room with the very last
words I wanted to hear at that moment, “Ummmm . . . . they’re coming up now to take
you to the MRI” “Oh no! I was just settling in for a much needed nap,” I thought. This
order came from the Rheumatology doctor to check out the joints in my legs. I point
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blank told the technicians that I couldn’t guarantee that I could keep my body still given
that it’s prone to predicting volcanoes (sure, they might be 1 million years away . . . but
don’t say I never warned you!). “Oh, that IS going to be a problem,” I heard muffled
through the ear plugs that were popped into my ears. I lay there smugly thinking,
“Yeah, that may be so. But it’s not MY problem!” In any event, I was most pleased with
this MRI experience than with the last. The last time, they were monitoring my upper
body, head going in first. Today, since they were checking out possible problems in my
legs, only my lower body went through what looked like a scary tanning booth and
sounded like a circus that was thrown across the street. I was given a sedative, and it
still didn’t work that well. I was shaking even while asleep.
· When I got back to the room, I was still asleep. Once I opened my eyes, I was startled
to see my mom next to me sitting in a chair. She looked as though she’d always been
there. Now what? Was I having hallucinations now? She said she was planning on
staying here through the weekend.
· My legs were still very bloated and in great pain. But, the weight has been
decreasing and my leg muscles don’t hurt like they have for the past couple of
days. The diuretic medicine I’ve been taking is working like a gash that was punctured
in the Hoover Dam. As such, with the water loss, I’ve been able to get up and hold my
balance better. I know that fairly soon I’ll be able to walk on my own again.
· There was a neurologist who came in. He had me doing a lot of hand-eye
coordination exercises. One of these was him drawing an almost perfectly drawn spiral
on a piece of paper and then handing it to me. He wanted me to trace the same line
right next to his line. It was a pathetic attempt. It looked like a blind man or newborn
had drawn it. He then video taped me shaking and all. One would think I would be feeling
like a freak in the circus. Not me. I was enamored with the idea and asked the guy to
give a me copy of that!
December 7, 2008
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My aunt and father showed up at around 11:00am. I was surprised to see them walk in,
realizing that they were here to pick up my mom. They stayed until 4:00pm. Some
recent developments:
· I had forgotten to mention earlier that one of the reasons I was brought back down
to ICU again this last time is because my kidney function wasn’t good. I have since been
told that it is looking much better. (Sorry I can’t provide more information. So many
people come in and out of my room. – MOST of them ignoring my sign on the door that
says, “Please knock before entering.” I can’t keep track of anyone’s name anymore.)
· However, my thyroid hormone is low. One of the doctors told me that it’s normal for
patients who have been through the type of surgery I’ve been through. I forgot how they
were planning on treating it.
· After weighing in at a plump 150 pounds on Thursday, I was weighed again this
morning weighing only 126 pounds! So, I lost 24 pounds over the weekend. This weight
loss (all water), allowed my legs to return to their “normal” state of atrophy, but still
strong enough to support my weight. The pain I was complaining about before is now
gone, and I’m able to stand and walk a little bit again.
· The tremors have calmed down a little. Others have noticed it, but I don’t really
think it has.
· I was also told that I was supposed to be moved back up to a regular room on the
11th floor tomorrow. I’m not crossing my fingers though.
December 8, 2008
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Greetings from Crook County!
I’ve been allowing myself to sleep as long as I want. Nevertheless, I was woken up at
3:00am (can’t even remember why). Followed soon later with X-Ray Renegades who
just swoop into your room hidden by a huge machine twice their size, yell as loudly as
they can, “GOOD MORNING!!!” as they switch on the brightest light in the room. That’s
it. I’m done. Where’s the remote?
· After weighing in at a plump 150 pounds on Thursday, I was weighed again this
morning weighing only 126 pounds! So, I lost 24 pounds over the weekend. This weight
loss (all water), allowed my legs to return to their “normal” state of atrophy, but still
strong y enough to support my weight. The pain I was complaining about before is now
gone, and I’m able to stand and walk a little bit again.
· Everyone who came into the room was impressed with the weight loss and reduction
in pain. I still feel the shakiness is there just as bad as it has been. Others say that it
doesn’t look as bad.
· The first one to show up was Paul, the physical therapist. I showed him that I was
now able to get uda, p on my own and was strong enough to do a little walking; which
we did. We ran into Dr. Cotts and crew, who just gave me a brief update there in the
hallway.
· Dr. Cotts just briefly told me that I was scheduled for both an echocardiogram and
another biopsy (of course, neither of which happened today!)
· I WAS told that I was going to be transferred to a regular room on the 11th
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floor. Later around 1:00ish, I was told that they didn’t have any free rooms up on that
floor, so, I’d just have to wait (a fact of life I’d have to get used to, BUT “At least I got a
new heart!” — how’s that for perspective.) At 4:30ish, I was told by my nurse that a
room DID open up. So, I packed everything up (again) to move to a new room. I wanted
to make sure everything I had went up with me so that I don’t get into any trouble with
my aunt who has lent me several movies to watch.
· During my wait, the neurology people came back into my room, checking out my
joints and ability to stay steady. (yada, yada, yada)
· Well, an hour and a half after my nurse told me I’m being moved to room 1133, I
was being moved to room 1133.
· The rest of the night was spent just watching TV, writing for the blog, chatting with
friends on Facebook. Tomorrow, I’m scheduled for a biopsy as well the echocardiogram.
December 9, 2008
Surprise, surprise! The first thing that happened today was my being transported to the
Cath Lab (catheter lab) for the biopsy. Asking for changes in my routine is something
that requires my patience. Another plus for this hospital is that, although they’re slow,
they always come through eventually. (Except once when my order for Sherbet never
came to fruition!)
· At 9:30ish I was taken to the cath lab. They (the nurses and cath lab technicians) did
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as I asked, which was to heavily sedate me enough so I wouldn’t feel a thing. They
prepped me. And somewhere, somehow, I fell asleep. The next thing I knew was that I
was still being prepped for the surgery. But, when I looked up at the clock, it was 10:30,
my robe was being put back on, and I was being shifted over to the cot I came in
on. Those were some pretty good clues. (You might be asking yourself, “Why didn’t you
just ask?” — Well, I’m often at a loss for words and it’s tough to formulate a sentence in
my head, especially right after being woken up.)
· Since they got me in and out of there so early, I never had a chance to really get that
hungry.
· I spent much of the day watching another Illinois Governor go down in flames.
· I was taken off all the IV’s, so I’m able to walk freely, now.
· One of the nurses really made my day. She told me that often when they get a call
from ICU, all the nurses are very curious about how I’m doing specifically. I’ll have to be
sure to come visit them once I’m finally checked out. (I have to come in here every other
week anyway)
· That reminds me, I worked it out between the hospital and my parents to let me be
released on Thursday.
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· I want a puppy. (A little black pug!)
December 12, 2008
We are waiting to hear if Steve will actually be released tonight. He doesn’t feel well but
they think the hospital is actually making him more ill. I think Steve feels apprehensive
about losing his safety net.
Please say a little prayer for Steve tonight.
Thanks!!!
Sue
December 13, 2008
Thanks, Sue for stepping in.
I apologize for missing a couple days here. As it turns out, the night before I was
supposed to released, I got really nauseous and developed flu-like symptoms. I felt
extremely sick, so the doctors felt it made more sense to keep me there one more day.
Without getting into the gory details, I just spent the whole day couped up like the
bubble-boy or, more fitting, Howard Hughes.
In any event, when I woke up this morning, I felt a lot better; not really 100%, but I’ve
just been SOOO ready to get out of the hospital, I couldn’t stand it anymore. So, the
doctors were ok with letting me do whatever I wanted. As the day wore on, I got more
and more apprehensive. My parents had been at the hospital for a long time, and, I just
didn’t want any more false alarms.
I’d become used to being in the hospital, it was the hospital that was making me sick,
and I knew it. Fortunately, they told me it was just a very mild infection. The best way for
me to get healthy again, was to be at home. Heck, I’d already missed one major holiday,
there’s no way I was gonna spend Christmas day listening to beeps, dragging around IV
poles, and watching re-runs of Reno 911.
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So, at 8:15pm today, I was being wheeled out on a wheelchair and escorted out!
FINALLY! I’m home!!
December 13, 2008
Today was my first day out of the hospital. I’m actually staying at my aunt and uncle’s
house, which is down the road from my parent’s place. I stayed up really late lastnight
and allowed myself to sleep in. I got up around 9:30. It was a fun day, filled with several
new “firsts” while wearing my new heart.
· While I still didn’t get a chance to walk through a mall to absorb the “Christmas
spirit” and get a walk in at the same time, I did finally get a chance to take a shower for
the first time in over 2 months. Getting rid of the extra layer of hospital film that
accumulated all over me was a rewarding experience!
· Sleeping in without being interrupted was nice, too!
· Feeling the biting cold and wearing a winter coat was surprising. I forgot what
“cold” meant. The last time I had been outside, we hadn’t seen temperatures below 65
yet!
· I have to take about 20 pills scattered throughout the day every day. This is in
addition to keeping track of my weight, blood pressure, temperature, and blood glucose
levels.
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· My aunt and mom have been angels in terms of taking care of me, here. I’m afraid
of taking advantage of anyone, though. When you’re in the hospital, it’s so easy to just
order the nurses around like they’re indentured servants. I’m also concerned about
making sure I don’t wear out my welcome. It’s definitely hard to let go and allow
yourself to resign yourself into the care of others. For instance, imagine that you feel
sharp chest pains whenever you try to bend down or reach up or stand up without using
your arms, things I’m not “allowed” to do while the wounds from the surgery
heal. Because of the side effects of one of the anti-rejection drugs (a steroid called
“prednisone”), I’m shaky and wobbly. I can’t keep soup on a spoon, for instance, without
most of spilling all over me. So, my mom fed it to me like I was a baby. (Oh don’t you
just wish you had a picture of that, don’t you?!)
· In any event, “at least I got a new heart!” which means, “I’m not
complaining”. Really, I’m not! I’m actually feeling really good for a change, happy, in
fact! Despite my cynical, sarcastic style (“Ya THINK??”), I know deep in my new heart,
that God has taken care of me and that I’m extremely fortunate. I have to start all over
again, but, there’s something exciting and adventurous about the notion. Yes, that will
mean filing for bankruptcy, living much more modestly than I did before, and, being
content. But, it’s refreshing to know that I’m not going to allow myself to get into retail
debt at all anymore and that I won’t have to worry about spending too much on things I
can’t afford. Man, how I hated that feeling that I was stretching myself so thin, having
my credit cards declined, receiving calls from collectors, etc.
· Obviously, I still have things to whine and groan about, things that nag at me, (most
significantly the feelings of injustice I was treated with during the divorce). But, I figure,
it’s all just a part of the “refining” I’m going through. (Too bad they don’t make a pain
killer for that.)
Anyway, my feelings of nausea have mostly dissipated. I’m feeling better than I
did yesterday which was better than the day before that. I spent most of the
day sitting in a chair (instead of in a hospital bed) writing up a fancy
spreadsheet to keep track of all my medical metrics.
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December 14, 2008
For anyone requesting Steve’s address:
Steve Berg
1433 Albany Ln
Rockford, IL 61107
Sue
December 14, 2008
My aunt and uncle have graciously allowed me to take up roost at their cozy, ranch
home just south of CherryVale Mall. Since their house is easier for me to ambulate
through on a single-story, we decided it was a better option for my recuperation than my
parents’ place. They have a guest bedroom which has a bathroom directly across the
hall, making the need for precise navigation less urgent at night.
My aunt’s name is Jan, but due to circumstances that evade even the greatest forensic
minds in the universe, the Berg’s still refer to and call her “Moch” (pronounced
“Moach”). All that is known about the source of this nickname, is that it was bestowed
on her by her brother (my father), Marvin at some point during childhood. The man has
actually nicknamed several of us, each of which has never worn off. My mother’s name
is “Hilde,” but, she has been doomed to be branded by the oh, so, flattering term of
endearment, “Hilch.” My sister, Sue, has the honor of holding several designations
throughout her lifetime: “Sush” (pronounced “Soosh”), “Poke” (because she always used
to be the last one to finish her meal at Ponderosa Steakhouse), and “Puz” (pronounced
“Pooze” – this one was short-lived). Obviously, I have a nickname, too. Only a few of my
non-relatives know it, and are free to take a guess. Subsequently, my dad has
shamelessly dubbed himself “Bill” – which has totally failed acceptance by the rest of the
55 / 236
family. Actually, I have a theory as to the reason my dad adopted this practice. It’s a
coping mechanism in an attempt to shadow the embarrassing reality of his given name.
Today, my mom, who spent the night on the couch keeping the Christmas tree company,
pounded on my door announcing that it was well past pill time. At 9:45, I got up.
There were a stream of people that flowed through the house today, including Ethan’s
brother and sister-in-law who generously cut my hair; my dad who showed up for
“breakfast” (raspberry pie . . . ahem); my sister Sue who came over to educate us on
mortgages, banks, and foreclosures, hoo-ha! A neighbor who helped get us started on
the Caring Bridge site.
I ate a very healthy of mac & cheese for lunch – destroying my appetite and gut for the
rest of the day.
If anyone would like my home address (cards, potted plants, board games and money
are all welcome! J ) is now:
Steven Berg
1433 Albany Lane
Rockford, IL 61107
56 / 236
December 15, 2008
Hey everyone,
I don’t have a whole lot to report on today, and, actually I have to get up very early
tomorrow because I have to be in downtown Chicago by 8:00 tomorrow morning for a
biopsy and echocardiogram and everything else. Your prayers and well-wishes that
everything tests out ok is definitely more than welcome!
December 16, 2008
Well, it looks like I jumped the gun too quickly. It appears there’s some bizarre magnetic
force drawing me back to the hospital. I say that because . . . that’s where I am again
for the next couple days. This will probably give me enough time to convince myself
that my premature gloating about the fact that I was “home home,” wasn’t the cause of
this re-admittance.
· I was scheduled to get a biopsy again early this morning at 8:00. (Again, a biopsy is
a minor surgery where they insert a catheter that goes directly into the heart. Once
there, the catheter scrapes off a piece of the new heart which they bring to the lab for
analysis.) My sister agreed to drive my mom and I into the hospital for this regularly
scheduled procedure.
· We left at 5:30 this morning and arrived exactly at 7:30. We went to the cath lab
right before 8:00. Blood samples were drawn (albeit, not easily, since my veins are fed
up with being stuck all the time and are rebelling by hardening up when they try to stick
needles in them.) At 8:30, I was taken to the echo lab for an echocardiogram. After that,
I was wheeled back to my parking spot in the cath lab to wait for the biopsy.
57 / 236
· I was there waiting for about an hour (actually, I think I fell asleep). I had already
gotten undressed and was waiting there in my sexy hospital gown. Out of the blue, one
of the nurses peeked in behind the curtain and announced, “Steven! We can’t do the
biopsy. It looks like your INR levels are too high” (Meaning, my blood was too thin to do
the procedure, since bleeding out uncontrollably would be a bad thing.) All the stuff was
pulled back out of me, and I was taken back out to the waiting room expecting to see my
mom and sister.
· Alas, they weren’t there as they were expecting me to be out for a couple more
hours. I just sat there in what felt like a well-air conditioned waiting room. After about
half-an-hour, they came casually walking in, surprised to see me. I explained what
happened and we went down to the cafeteria, which, ironically, I had never seen
before. I had been fasting since midnight and was ready to keel over from hunger and
dry mouth. I ate a few bites of a taco salad and a large Mountain Dew. By then, the
expected blizzard had begun.
· The next thing we needed to do was to go up to the 19th floor to visit with Dr. Cotts
and my new nurse practitioner, Dharti Patel. She and my sister went through all of my
meds to make sure the chart matched the pill box. I literally have about 50 pill
bottles. Every morning, when I wake up, I have to take over 20 pills. Then there’s a few
more that I have to take 3 more times during the day.
· As usual, after having eaten about an hour later, I started feeling nauseous. I told
the NP. A couple minutes later, all the color was draining from my face and I started
feeling faint. I announced that I could tell my blood pressure was dropping quickly (It
was 128 over something when we entered the room.) She lowered the bed quickly and
took my blood pressure again. It had gone down to 98 over something (which, normally
isn’t bad, but that it had dropped so fast so quickly was not good. All of a sudden, my
hopes of returning back home had faded away. My mom and sister wheeled me back
downstairs where I was admitted back into the hospital. Soon, I was whisked away back
up to the 11th floor, room #1138. (Well, at least it wasn’t the ICU.)
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· No one knows how long I’ll be here again, but it’s because of these gastro-intestinal
issues, that they want to run more tests and keep me here.
December 16, 2008
Well, it looks like I jumped the gun too quickly. It appears there’s some bizarre magnetic
force drawing me back to the hospital. I say that because . . . that’s where I am again
for the next couple days. This will probably give me enough time to convince myself
that my premature gloating about the fact that I was “home home,” wasn’t the cause of
this re-admittance.
· I was scheduled to get a biopsy again early this morning at 8:00. (Again, a biopsy is
a minor surgery where they insert a catheter that goes directly into the heart. Once
there, the catheter scrapes off a piece of the new heart which they bring to the lab for
analysis.) My sister agreed to drive my mom and I into the hospital for this regularly
scheduled procedure.
· We left at 5:30 this morning and arrived exactly at 7:30. We went to the cath lab
right before 8:00. Blood samples were drawn (albeit, not easily, since my veins are fed
up with being stuck all the time and are rebelling by hardening up when they try to stick
needles in them.) At 8:30, I was taken to the echo lab for an echocardiogram. After that,
I was wheeled back to my parking spot in the cath lab to wait for the biopsy.
· I was there waiting for about an hour (actually, I think I fell asleep). I had already
gotten undressed and was waiting there in my sexy hospital gown. Out of the blue, one
of the nurses peeked in behind the curtain and announced, “Steven! We can’t do the
biopsy. It looks like your INR levels are too high” (Meaning, my blood was too thin to do
59 / 236
the procedure, since bleeding out uncontrollably would be a bad thing.) All the stuff was
pulled back out of me, and I was taken back out to the waiting room expecting to see my
mom and sister.
· Alas, they weren’t there as they were expecting me to be out for a couple more
hours. I just sat there in what felt like a well-air conditioned waiting room. After about
half-an-hour, they came casually walking in, surprised to see me. I explained what
happened and we went down to the cafeteria, which, ironically, I had never seen
before. I had been fasting since midnight and was ready to keel over from hunger and
dry mouth. I ate a few bites of a taco salad and a large Mountain Dew. By then, the
expected blizzard had begun.
· The next thing we needed to do was to go up to the 19th floor to visit with Dr. Cotts
and my new nurse practitioner, Dharti Patel. She and my sister went through all of my
meds to make sure the chart matched the pill box. I literally have about 50 pill
bottles. Every morning, when I wake up, I have to take over 20 pills. Then there’s a few
more that I have to take 3 more times during the day.
· As usual, after having eaten about an hour later, I started feeling nauseous. I told
the NP. A couple minutes later, all the color was draining from my face and I started
feeling faint. I announced that I could tell my blood pressure was dropping quickly (It
was 128 over something when we entered the room.) She lowered the bed quickly and
took my blood pressure again. It had gone down to 98 over something (which, normally
isn’t bad, but that it had dropped so fast so quickly was not good. All of a sudden, my
hopes of returning back home had faded away. My mom and sister wheeled me back
downstairs where I was admitted back into the hospital. Soon, I was whisked away back
up to the 11th floor, room #1138. (Well, at least it wasn’t the ICU.)
· No one knows how long I’ll be here again, but it’s because of these gastro-intestinal
issues, that they want to run more tests and keep me here.
60 / 236
December 17, 2008
I woke up this morning around 8:30. As much as I’m trying to keep my head up and
maintain a good attitude, it’s really, really tough. Especially since I’m totally missing the
Christmas season – one of my favorite times of the year. I just want to walk around the
mall, hear the corny, overplayed Christmas music, look at the festive window displays,
and sit in a Starbucks for a few hours reading a good book or browsing the internet. –
Instead, I’m back here in this place, dealing with the loneliness, and missing the life I
used to have. I know I’m lucky to be alive and this is one of the most humbling yet
educational experiences I’ve ever had.
It’s difficult not to compare my situation to Job’s from the Bible. No one around me has
died (all of Job’s sons were killed), but he lost his wealth, his dignity and respect, and his
health. Nonetheless, even though he would get ticked off at God, he never lost
faith. For me, it’s been the opposite. I don’t get mad at God, but I do have a hard time
with faith.
Anyway, my INR levels were low enough today to allow me to go forward with the
biopsy. I was, at least, glad to get that over with. I had to fast 2 days in a row, though. I
stopped eating and drinking at around 10:00pm lastnight and then didn’t get a chance to
eat anything until after 3:00pm today.
My nurse today, Mohammed, was new (3 weeks) and didn’t know how things worked
around here, not even as much as I did. For example, he didn’t know that the
responsibility was his to cancel the order that put me on the fasting schedule. He would
also forget several things that I had asked for. It was very frustrating. It didn’t help that
he was a little arrogant, too. (That’s a combination that always drives me crazy;
arrogance mingled with an equal amount ignorance.) He wasn’t totally without humility,
though and was actually a nice guy. When we disagreed on something and I was proven
right (although, I would never say, “I told you so” – another vice that insecure people
can’t resist using), he would admit it.
61 / 236
I don’t know the results of either the echocardiogram or the biopsy yet; nor do I know if
I’m going to be released again within the next day or so. There’s still some serious
question about what’s wrong with me. With all the samples I’ve provided, the doctor’s
aren’t convinced that my problem is a bacteria called “c diff” (shortened form of a much
more complicated name). So, they’re doing all these tests on me to make sure. The
good thing about today is that I never had nausea. I seriously think that’s a function of
my diet habits, which I seriously altered today – eat harder foods, nothing with milk in it,
and eating slower and in smaller amounts.
December 17, 2008
I woke up this morning around 8:30. As much as I’m trying to keep my head up and
maintain a good attitude, it’s really, really tough. Especially since I’m totally missing the
Christmas season – one of my favorite times of the year. I just want to walk around the
mall, hear the corny, overplayed Christmas music, look at the festive window displays,
and sit in a Starbucks for a few hours reading a good book or browsing the internet. –
Instead, I’m back here in this place, dealing with the loneliness, and missing the life I
used to have. I know I’m lucky to be alive and this is one of the most humbling yet
educational experiences I’ve ever had.
It’s difficult not to compare my situation to Job’s from the Bible. No one around me has
died (all of Job’s sons were killed), but he lost his wealth, his dignity and respect, and his
health. Nonetheless, even though he would get ticked off at God, he never lost
faith. For me, it’s been the opposite. I don’t get mad at God, but I do have a hard time
with faith.
Anyway, my INR levels were low enough today to allow me to go forward with the
biopsy. I was, at least, glad to get that over with. I had to fast 2 days in a row, though. I
stopped eating and drinking at around 10:00pm lastnight and then didn’t get a chance to
eat anything until after 3:00pm today.
My nurse today, Mohammed, was new (3 weeks) and didn’t know how things worked
around here, not even as much as I did. For example, he didn’t know that the
responsibility was his to cancel the order that put me on the fasting schedule. He would
62 / 236
also forget several things that I had asked for. It was very frustrating. It didn’t help that
he was a little arrogant, too. (That’s a combination that always drives me crazy;
arrogance mingled with an equal amount ignorance.) He wasn’t totally without humility,
though and was actually a nice guy. When we disagreed on something and I was proven
right (although, I would never say, “I told you so” – another vice that insecure people
can’t resist using), he would admit it.
I don’t know the results of either the echocardiogram or the biopsy yet; nor do I know if
I’m going to be released again within the next day or so. There’s still some serious
question about what’s wrong with me. With all the samples I’ve provided, the doctor’s
aren’t convinced that my problem is a bacteria called “c diff” (shortened form of a much
more complicated name). So, they’re doing all these tests on me to make sure. The
good thing about today is that I never had nausea. I seriously think that’s a function of
my diet habits, which I seriously altered today – eat harder foods, nothing with milk in it,
and eating slower and in smaller amounts.
December 17, 2008
I woke up this morning around 8:30. As much as I’m trying to keep my head up and
maintain a good attitude, it’s really, really tough. Especially since I’m totally missing the
Christmas season – one of my favorite times of the year. I just want to walk around the
mall, hear the corny, overplayed Christmas music, look at the festive window displays,
and sit in a Starbucks for a few hours reading a good book or browsing the internet. –
Instead, I’m back here in this place, dealing with the loneliness, and missing the life I
used to have. I know I’m lucky to be alive and this is one of the most humbling yet
educational experiences I’ve ever had.
It’s difficult not to compare my situation to Job’s from the Bible. No one around me has
died (all of Job’s sons were killed), but he lost his wealth, his dignity and respect, and his
health. Nonetheless, even though he would get ticked off at God, he never lost
faith. For me, it’s been the opposite. I don’t get mad at God, but I do have a hard time
with faith.
63 / 236
Anyway, my INR levels were low enough today to allow me to go forward with the
biopsy. I was, at least, glad to get that over with. I had to fast 2 days in a row, though. I
stopped eating and drinking at around 10:00pm lastnight and then didn’t get a chance to
eat anything until after 3:00pm today.
My nurse today, Mohammed, was new (3 weeks) and didn’t know how things worked
around here, not even as much as I did. For example, he didn’t know that the
responsibility was his to cancel the order that put me on the fasting schedule. He would
also forget several things that I had asked for. It was very frustrating. It didn’t help that
he was a little arrogant, too. (That’s a combination that always drives me crazy;
arrogance mingled with an equal amount ignorance.) He wasn’t totally without humility,
though and was actually a nice guy. When we disagreed on something and I was proven
right (although, I would never say, “I told you so” – another vice that insecure people
can’t resist using), he would admit it.
I don’t know the results of either the echocardiogram or the biopsy yet; nor do I know if
I’m going to be released again within the next day or so. There’s still some serious
question about what’s wrong with me. With all the samples I’ve provided, the doctor’s
aren’t convinced that my problem is a bacteria called “c diff” (shortened form of a much
more complicated name). So, they’re doing all these tests on me to make sure. The
good thing about today is that I never had nausea. I seriously think that’s a function of
my diet habits, which I seriously altered today – eat harder foods, nothing with milk in it,
and eating slower and in smaller amounts.
December 18, 2008
A quick update from Steve’s not so creative writer sister.
Today Steve called and said he could come home. So, I drove downtown to pick him up.
Steve is home again!
His next biopsy isn’t scheduled until after Christmas so barring any medical emergencies
, Steve will have his Christmas
at home with his family as opposed to the not so sterile, and very lonely, hospital room.
64 / 236
I’m POSITIVE Steve will be providing a more colorful version of this update but for those
playing along at home; Mark one down in the “at home” column. 🙂
Merry Christmas.
Sue
December 18, 2008
A quick update from Steve’s not so creative writer sister.
Today Steve called and said he could come home. So, I drove downtown to pick him up.
Steve is home again!
His next biopsy isn’t scheduled until after Christmas so barring any medical emergencies
, Steve will have his Christmas
at home with his family as opposed to the not so sterile, and very lonely, hospital room.
I’m POSITIVE Steve will be providing a more creative version of this update but for those
keeping track. Mark one down in the “at home” column. 🙂
Merry Christmas.
Sue
December 20, 2008
To sum up the past couple days of Steve’s life in the fast lane: chills and thrills! (The
chills come from [ALWAYS being cold!] and the thrills come from that victorious feeling
that comes with, “Ahhhhhhh . . . Thank God THAT’S overwith!”)
· I woke up in the hospital on Wednesday morning. Rumors abounded that the most
vicious snow storm in history (what my dad likes to call “global warming”) was about to
stick its talons into the northern Illinois. It was supposed to hit until mid-afternoon. As
the morning worn on, I was told by everyone who came into my room that they wanted
to let me go TODAY! I called home to let my parents know, but the coming snowstorm
was a definite impediment. I called my sister who was already on her way to a meeting
in Schaumberg. (For those who have no idea what “Schaumberg” means, it’s a suburb
next to O’Hare airport, just west of the city). Since it was fairly close, I called her to see
if she wouldn’t mind coming to pick me up. She certainly didn’t, but it took a while for
her to get through the meeting and then drive over to the hospital. Meanwhile, the
65 / 236
snowstorm was rescheduled until later in the evening. It looked like it wasn’t going to be
that bad of a drive after all. This gave me plenty of time to get ready to go. The nurses
pulled out all of the evil pins and needles that were invading my veins. I sat anxiously
waiting to get out of the place, as I was worried that the longer I stayed, the doctors
would come running in with whacky test results ending with the statement, “we need to
admit you for some further testing.”
· Well, luckily it didn’t happen. Sue showed up around 3:00. I told her to grab a
wheelchair on her way up since it would another half-hour for a staff escort to arrive with
one. We threw everything I had on the chair, even me.
· After a quick stop at a tollway oasis for some Chinese, we made it back to Rockford
in good time.
· It wasn’t until midnight that the storm of the century started. What was supposed to
be a 12”, 13”, 14” blanket of “global warming” falling on top of us, turned out to be 6” or
7”.
· My parents came over for a brief visit. I spent (no kidding), 6 hours spread across 2
days just filling my pill box! If that sounds anal retentive (well . . . it is), I would have to
say, you couldn’t possibly understand! I walked out of that hospital with a bag of pills
worth more than $2000. There are nearly 30 separate bottles, of different dosages,
different names, that need to be taken at different times of the day. I spread the bottles
all out on the table and figured out a system to make sure that I was filling the pill boxes
properly. If there’s anything I don’t want to screw up is the pills (The PILLS! The
PILLS! The PILLS!!!!!). The first time I received a regimen of pills to take home, I allowed
myself to slack off and it only resulted in my finding my butt back in the hospital. Now
that I have this brand new “Cadillac” of a ticker, the last thing I need is for my naughty
immune system to declare war on the foreign object that happens to be keeping me
alive. Basically, it’s the drug called “Prednisone” that’s allowing me to wake up every
morning. But Prednisone has some nasty side effects – most of the other drugs of which
66 / 236
are used to treat the side effects for. I created a nifty color-coding scheme that allows
me to easily fill the box without having to take a whole afternoon to do. I can’t imagine
someone whose memory isn’t all that reliable being left to figure this out.
· Friday night, my uncle broke out the card table, and I started putting together a
jigsaw puzzle. (I counted the pieces of this 1000 piece puzzle to make sure they were all
there and lo and behold, I counted 1026. (Go figure)
· My mom and dad came over this afternoon and then my sister and her kids came
later as well. My mom and I made a quick tour of the mall that I’ve been dying to visit,
just to see the Christmas sights and sounds. I wound up wandering around Barnes and
Noble carrying an egg nog latte. My mom was nice enough to buy me a paperback of a
book I’ve been wanting to read for months now, called Atlas Shrugged by Ayn Rand. It’s
hardly a Christian book, but it’s a novel wrapped around an interesting, (albeit primitive)
philosophy that makes you think. I don’t chalk Rand up to be a serious thinker, but her
pop-philosophy has a core of complexity that draws you in, much like a science fiction
movie might have.
· While there at the store, nature was calling me to find the nearest rest room. As I
was there, the thought occurred to me, “Wow! This is my first time using a public rest
room in 4 months. It wasn’t any kind of epiphany or memory worth savoring for
nostalgia’s sake, just more of a “hmmmm . . . seat protectors . . . this feels
weird. Why?”) Funny, after almost 80 days in the hospital, it was THAT moment that I
realized, “Wow! I’m actually back in the real world!”
And life goes on . . .
67 / 236
December 21, 2008
This picture was taken today . . . not exactly my Sunday’s best, but, when it’s 4 degrees out, it’s the best
I’m gonna do! Aside from the bedhead, I sure hope I look a lot better than I did 6 weeks ago!
Not a whole lot to report on today. I’ve got the shakes and my glucose levels are pretty low, but, I’m not
too worried.
December 23, 2008
I spent the entire day today working on my bills. (Scary!) They are ALL either late or
already in collections. ANY further financial support (even ongoing, monthly) would be
greatly appreciated!
The charity set up for me to help handle these expenses is ready to be established. All
donations will be tax deductible. I will not have any direct access to the funds myself.
THANK YOU! THANK YOU! THANK YOU! to those of you have helped us raise the $500
start up fee to get this going! These include: Tom Illg, Clinton Ohlers, Erik Carney,
Jonathan Almquist, Randi Dunn,Tony and Michele Raymond, Robert Heisler, and Denise
Bowe!!
It was a pretty uneventful day, but I’m feeling so much back to normal now, I almost
forgot what it was like!
My dad came over this afternoon and we watched a great “pick-me-up” movie, “The
Green Mile”
I also made my most famous mulled apple cider (or Wassail if you prefer!). It was
delicious! It gave the place that special smell of cozy home goodness that could only
have been topped with longer cinnamon sticks and a fire in the fireplace!
68 / 236
I did get a lot done. Bills organized, emails answered, and phone calls made.
December 23, 2008
I have been feeling a whole better lately. I’ve been sooooo cold, abnormally too, since everyone else
seems to be comfortable. I’ve also been shaking a lot more today. Other than that, I feel like a million
bucks (well, at least $1.75).
· My sister informed me today that I lied in a previous post where I stated that my first visit to a public
restroom was at the mall the other day. Actually, my first visit was the day we left the hospital. We
stopped at one of the tollway oases on our way home. (Thanks Sue, for kyboshing my pseudo-epiphany
moment at Barnes and Noble!)
· I had to run over to a local hospital today in Rockford in order to get some blood work done that
needed to be sent over to Northwestern today. They were checking my Coumadin/INR levels (meaning,
the thickness of my blood). As usual, the nurse had to fight with my poor veins which are like hard copper
tubes now.)
· We then went over to Old Country Buffet to meet my sister and her kids for lunch. We took a couple
pictures which, I’ll let Sue upload.
· It was nice to get out. I used a cane to walk around because I still get tired and a bit winded.
· The puzzle I started putting together has a piece missing. I’m really bummed about it! It’s a cool
photomasic puzzle with snoopy being Joe Cool. I wanted to get it glued, framed, and sent to
Austin. Luckily, I think I can contact the company and get a replacement.
· Currently, most of my other concerns are not really centered about myself since there are other in my
life right now that I’m much more worried about.
69 / 236
(Doncha ya love the new pic! It was taken today at Old Country Buffet where they took me out for lunch!)
— From left to right is my nephew Zander, me, my niece Sydney, my sister Sue (standing), my aunt Jan
(whom I’m staying with), and my mom. — Sydney and Zander wanted to sit by ME!)
December 24, 2008
There’s no doubt that this has been one of the toughest years of my
life. NEVER in my wildest dreams (even those from a year ago!), would I
have imagined the downward spiral I was blindly about to fall into. The only
reason I can think of, is that God had a SERIOUS lesson for me to learn; in
fact, it was a lesson that had actually started in the fall of 2006. I thought
the worst had been over, when, in fact, there was so much more.
That year, due to some driving offenses, I lost one of my prime possessions,
my brand new 2006 BMW 325i. A few months later, my wife suddenly
moved out on me, taking so many household possessions, furniture, our
dog, and worst of all, our son! It was the cruelest thing anyone had ever
done to me. I spent the next several months of 2007 all alone and
depressed. I didn’t have a car and was entirely dependent on the bus
system. “But, at least I had a job,” I naively boasted.
The custody evaluation was a total disaster. The evaluators, as is typical,
never gave me a chance. They were entirely biased towards the mother
and ended up recommending she get sole physical, and sole legal custody.
– I lost the kind of access to my son that I believe he needs. The reason she
won legal custody is because of a common practice that lawyers always use
against the non-custodial parent. If there is enough animosity between the
parents (even if it’s only one-sided), the custodial parent can demonstrate
a total inability to get along with the other parent, which, the courts think, is
more stressful on the child. I think it’s totally disgraceful.
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Not only that, but I was ordered to pay over $1500/month for child
support! (Austin wasn’t even 2 years old and these wacky judges thought
this was fair.)
During the trial, some very dishonest things were said, and some extremely
embarrassing and totally irrelevant evidence was used against me.
2008 rolled around and my attorneys’ fees were already in excess of
$50,000. I couldn’t continue to afford them, so they had to withdraw. The
trial was originally scheduled for a day in March. But I was without an
attorney and she had forced me out of the house I was living in so that she
could go ahead and sell it. The house ended up going into foreclosure even
though it could have been prevented with some alterrnative ideas I had
suggested.
It was soon after the finalization of the divorce that 1) I became unemployed
unexpectedly and 2) my health began deteriorating fast. I was getting
weaker and weaker, unable to breathe, finding it hard to walk or stand up,
and even to lie flat in bed! In mid-August, I was rushed to the hospital and
found out that my heart was dying and that I would need a heart
transplant. I couldn’t believe the tragic coincidence in all of this. It was
unbelievable to me. Not only had I lost it all, I was even about to lose my
heart, if not even my own life.
I had no idea my health had declined THAT much. I would be in and out of
the hospital for the next 80 days, and would not be able to work for a very
long time. I lost the apartment I was living in, several of my friends in
Minneapolis, and virtually everything I’ve been placing such a high value on.
I don’t have a single penny to my name anywhere.
I had lost so much in the course of one year. My finances and credit are in
total ruin, and, I needed to have a $750,000 – $1,000,000 surgery while not
even being insured. As my family was told by one of the cardiologists, my
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chance of survival didn’t look good at all and that they might as well
prepare themselves to say goodbye because he thought there was no hope
for me.
Luckily, he was wrong. We found some facilities that agreed to take my
case. It was while I was being strapped in the helicopter that I broke down,
realizing the seriousness of my condition. I finally ended up at
Northwestern Memorial in downtown Chicago. The constant pain,
discomfort, being poked, prodded, tested, pulled on, pushed, moved,
yanked, yelled at, unable to go to the toilet without help and having several
tubes coming in and out of me most of the time, and not to mention the
incredible loneliness would continue to be my life until mid-December.
Once I was placed on the donor waiting list, they were able to find me a
donor heart pretty fast (only had to wait 3 days). On November 10th, I was
transplanted with a new, “Cadillac” of a heart. The old one was badly
misshapen and enlarged – worthless, and finally . . . dead.
Someone looking at my situation might think I have every reason to be
bitter and angry and wonder, “Why me? This is only supposed to happen to
old people! I had so much going for me!” Thoughts that I struggled so hard
with initially myself.
I was told I’d have about 15 years to live on this heart. (I intend to prove
the doctors wrong about that!). This has been a totally life-changing
event. Everything about it would have to change. Granted, it did take me a
while to get it in my head, but, the reality was, “I’m extremely sick and,
could even have been on my death bed. So I have no choice but to ride it
out.” I decided it didn’t do any good to stress myself out, to feel sorry for
myself, to worry about anything except getting healthy again. Gradually, I
gave up the hardness and anger that had developed against my ex, and
focused purely on Austin, my son. I was not about to let him grow up
without a father! So, my priority now was to get better myself so I could be
there for him. Feeling guilty, beating myself up, wishing things had been
different would serve no purpose and would only waste more precious time
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and energy that could be directed toward my healing; physically,
emotionally, and spiritually.
With practically everything stripped away from me, I became more and
more active on Facebook and this CaringBridge site! That’s when the real
miracles started happening! Suddenly, out of all the shadows of years gone
by, old friends that I thought had fallen into sinkholes somewhere, began
offering encouragement, coming together themselves and reuniting in what
has become a fantastic web of care and support. I had just come out of a
dismal place where I believed I was such a miserable person, a total
loser. My REAL friends and family has stayed with me, and have proven
their faithfulness to me.
I would NEVER have realized the wonderful gifts I had been given
throughout my life had I not rid myelf of the distractions and encumbrances
that the material, selfish side of me placed so much value on. It has only
been through my becoming so poor and thrown into a life-threatening place,
that I realized how rich I truly was! Through it all, God has saw fit to give
me the greatest gift this Christmas I could ever ask for!
Thank you all of you who have rallied around me during this hard time in my
life when I needed you the most! God bless you, and Merry Christmas!
When I survey the wondrous cross
On which the Prince of glory died,
My richest gain I count but loss,
And pour contempt on all my pride.
Forbid it, Lord, that I should boast,
Save in the death of Christ my God!
All the vain things that charm me most,
I sacrifice them to His blood.
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See from His head, His hands, His feet,
Sorrow and love flow mingled down!
Did e’er such love and sorrow meet,
Or thorns compose so rich a crown?
Were the whole realm of nature mine,
That were a present far too small;
Love so amazing, so divine,
Demands my soul, my life, my all.
December 26, 2008
I want to be sure to thank everyone who has commented on my Christmas Day entry. It caused me to put
further thought into my situation. First of all, I am no hero. Only God truly knows what sins I committed
during the marriage as well. It has taken a very long time for me to accept His forgiveness and then even
longer to forgive myself. My ego is still extremely fragile, and, even the slightest criticism is
piercing. Nothing seems more futile than worrying about what others think of you. Trying to impress the
unimpressionable, those who are intimidated and insecure is a waste of time.
“Move on” has been the most common advice I’ve been getting. That’s certainly not easy, especially
when there’s a child between us, a child who is also deeply loved by his father who is no less significant of
a parent than the mother. I received in the mail today, accidentally, a Christmas card addressed to my
former wife and to “Austin” It was seeing a piece of mail addressed to them without my name on it that
made me feel a little sick to my stomach and, introspective. I find myself wondering what Austin’s life is
like. Yet, I know I cannot dwell on our loss, as I indicated. This trial that God is allowing me to go through
can only be done by gritting my teeth, closing my eyes, and exercising extreme discipline. If there be any
fear in me, it’s only that I don’t know if I can trust myself. I KNOW the pre-programmed follow-up answer to
that which is waiting on every Christian’s tongue is, “Well, that’s why you need to trust God!” — “Trust
God, huh?” Honestly, I’ve never really known what that means, in actuality. I certainly don’t mean to
challenge anyone’s faith, but, what does one actually DO when they decide to “Trust God”? Does it simply
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mean, to do your best and not worry about what happens next? Even if you make a mistake, you just
shrug, dust yourself off, and keep going? Is that it? (Any of your thoughts on this or from your personal
experience would be helpful!)
In any event, I’ve been feeling healthier and healthier with each passing day. I need to get back into the
habit of going to bed earlier, though. But, it’s at 2:00AM that my mind just starts racing and all sorts of
different ideas are formed. It’s when I am most creative. (Well, that is if I’m not caught up in some cheesy
sit-com at the time.)
I did have another first yesterday, though. I finally finished the book, To Kill a Mockingbird , written by
Harper Lee. It’s been several years, I think, since I’ve read an entire book. (Audiobooks don’t
count!) Since keeping this blog, it has re-rekindled my interest in writing fiction and/or non-fiction and
looking into getting something published. Maybe it’s too fantastic to be realistic, but I know I’ve always
been amazed at how talented writers do what they do. “How did he think of saying that?”
My aunt and I took care of a couple of important errands this morning – 1) to pick up an application for a
handicapped parking placard and 2) to get a POA form signed and notarized for Sue.
My parents later came over for some lunch and to hang out a bit. We watched a pretty interesting movie
with Denzel Washington called, The Manchurian Candidate.
December 27, 2008
It’s winter. It’s “winter”?
Rainy, slushy, foggy day! Gorgeous!
I went to bed at 9:30 last night, and then, didn’t wake up until 10:00 this morning! The night before that (I
guess Christmas night), I was too hyped up on caffeine and couldn’t actually turn my mind off until 4:00 in
the morning. Such is my plague. I’m a night owl whose right brain only comes alive when the rest of me
wants to go to sleep.
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My mom and dad came over today for Swedish pancakes – somewhat of a tradition in our family. I’ve
never been quite sure what it is that makes Swedish pancakes, “Swedish.” Basically, all it is, is flour,
sugar, milk, and butter fried in a skillet until it’s paper thin – in other words, a crepe. When smothered in
syrup, though, they’re delicious!
As soon as the senseless half-hour argument about how my video camera ended up over at my sister’s
house was over, (Steve, Moch, and Sue – 1, Dad – 0), I then went with my parents shopping at Aldi’s. For
those who have no clue what that is, Aldi is a phenomenon imported from Germany – not a car, but a lowbudget
grocery store that doesn’t include any perks: no overhead music, the shelves are stocked with the
food still encased in their original boxes, no produce, nothing really “healthy” to choose from, and no one
is really in a good mood except for the occasional 3-year-old boy who likes to hit on my mom. But, the
good thing is, you can actually get a box of Twinkies for nearly half the price of a box of Twinkies at
another store.
We then sloshed our way over to one of the satellite libraries here in town. My dad is constantly on this
quest for DVD’s to watch. My mother hung out in the car and I went hobbling around the book cases with
my trusty cane. The selection was less than impressive. I was hoping to find some computer reference
books – nothing. I then was wondering if I could find any old classics which I’ve started regaining an
interest in. (“With 13 some aisles of ‘Fiction’ they’d have to have one for classics. Maybe this one has
some. Great! MORE John Grisham!” After touring through all the shelves of romance novels, mysteries,
and books destined to become chick flicks, I ended up in the kiddie section, where I turned around.
We then drove back to their house, which, I haven’t been inside of since I’ve been back to Rockford. The
house was full of boxes from my apartment that they moved me out of several weeks ago. I also found all
of my living room furniture in THEIR living room. Evidently, the claim is that I will be getting all of that
back once I get moved back into my own place.
We then went back over to the Preston’s house, but not before taking a late lunch break at Arby’s. (I
thought I had only ordered a large Jamocha shake. But, when it appeared on the table, it turned out to be
this gargantuan vessel of a cup that I could barely hold for very long, much less stomach in one setting!)
I’ve been getting several suggestions that I should turn this story of mine into a book. I’ve considered it,
since the plot is pretty much all there, but, becoming a successful author is probably as likely to happen as
someone being kicked out of their house, losing their job, getting divorced, going broke, and succumbing
to a rare case of congestive heart failure all in one year! Who knows, though, right?
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December 28, 2008
Besides constant, but minor chest pains, I’m feeling a whole lot more
“normal” again. My weight has even been increasing. I’m now finally over
120lbs! Being told that I need to eat more butter for the calories is not
something I’m used to, but then, not something I’m really fighting against,
either. I only hope that I won’t get too used to eating my toast with jelly
and butter once I reach a more “normal” weight!
My cousin Connie has been here with her twin boys, Ross and
Reed. They’re only a little bit younger than Austin, whom, I haven’t seen in
what seems like forever. I’ve been wondering if he is able to talk by
now. Connie’s boys are on the verge. I was thinking of calling my son on
Christmas Day, even though I’m sure his mother would not let me. I DID
ask her to at least send me a recent picture. (I’m sure when she read that, it
was met with howls of laughter!)
I just hung out at the house today, watching a lot of that TV show called,
“House”. I fell in love with it in the hospital, mainly because I started
understanding a lot of what they’re talking about. (But, when they start
showing the innards of people, I have to turn away.) Nevertheless, the
addiction to it is beginning to concern me. — For some reason, there’s
something interesting about the guy who seems to have no respect for
anyone. You obviously can’t admire that . . . but that he seems to get away
with it is intriguing. (Oh wait . . . We’re talking about a TV show, right?)
One of the things I’ve been worried about is getting used to taking the pills
when I should. Luckily, I’ve been able to fall into a routine. Upon waking up
every morning, I take all of my vitals, pop the pills and then eat
breakfast. Throughout the rest of the day, I’ve been keeping mental track
of when I need to take the next batch of pills. I always seem to wind up in
the family room watching TV with whoever is out here. Once I’m too tired to
stay up, I go to my bedroom and either watch a little TV there, do some
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writing, or read. Unfortunately, the “falling sleep” part doesn’t seem to
happen until 2:30 or even 3:00.
I’ve really been enjoying the real solitude, peace and quiet I’ve been
getting. There’s really no such thing as “privacy” when you’re locked up in
there. You could be changing and then turn around and find the cleaning
woman there emptying the trash, not even noticing that you’re there. So,
needless to say, you’re always on you’re guard. The only thing I have
seriously to worry about is for one of the cats to pounce on me in the middle
of the night. — But, for some reason, I was feeling a little depressed,
lethargic, actually. I wasn’t even sure why, (“Hmmm, are they REALLY giving
me enough Zoloft?”) It bugged me that it just seemed to be coming out of
nowhere. I sat in the living room for a couple hours working on the puzzle
that my uncle and I have been doing. Mostly, though, it’s great to just “be”
for a change.
By the way, tomorrow (meaning, the 29th!) is my sister, Sue’s
birthday! She’s the one responsible for getting all of this set up for me, so
be sure to send her a happy birthday wish. (suebautz@aol.com)
December 29, 2008
I was supposed to see a couple friends today, and I was eager to do so. But,
my stomach was pretty upset. (MAN! the LAST thing I need is for the
nausea to come back!) Plus, there’s been some family drama going on
(which, unfortunately, I’m not at liberty to broadcast!), so, I had to cancel
seeing them.
Today was my sister’s birthday. She’s 21 months younger than me. I know I
owe HER (and SEVERAL others) SOOOO much. But, I know I’ll never be able
to pay everyone back. It’s hard not to feel guilty on the one hand, since you
hate being dependent on charity. I am still stone cold broke so, I wasn’t able
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to give anything to anyone for Christmas and I’m not able to get anything
for Sue.
Anyway, Happy Birthday, Sue, and thanks for everything!
Living here at my aunt and uncle’s has been great! It’s warm, I feel very
comfortable, and there’s actual peace and quiet here. I try to keep all my
stuff out of the way and to help out as much as I can, but my chest is
constantly in pain, and I run out of energy fairly quickly.
Tomorrow, I have another appointment at Northwestern Hospital to get
another biopsy. I’m supposed to be there at (ugh), 7:00 in the morning. My
dad is going to be here at 4:15 to pick me up. It’s a good thing it’s early in
the morning, since that means I’ll be getting out sooner.
I’ve discovered one of the best stress relievers in the world. It entails letting
others who insist on making mistakes, even those whom you love, to go
ahead and make them. One of the most frustrating and futile endeavors I
think someone can do is to try to change someone else. It’s been tried on
me before, and, the only thing they want to do is rebel. One of the most
valuable possessions people have is their autonomy, especially grown
adults. Whatever character flaw someone has, it cannot be changed by
others around them preaching, nagging, and yelling at them. The only way
someone is going to be “rehabilitated” is through an internal desire to do
so. Letting them go, seems to be the only remedy. If they crash and burn,
it’s not anyone else’s fault. But, unless they hit “rock bottom” (whatever
that means for them), they won’t change. The one choice those around
them have, is to refuse to put up with it. That could mean a variety of
things depending on the situation. Getting mad at them only feeds the
problem, driving them into defiance, producing the totally opposite result.
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December 30, 2008
Steve’s journal entry is below. Please read today’s update.
I just want Steve to be clear on something.
Steve- You don’t owe me! I never said you did and frankly it makes me very
uncomfortable to hear that. First of all.. This may come as a shock but I didn’t do it
entirely “for you”. I was not satisfed saying good bye to my older but still very young
brother. It just seemed wrong, although your grim reaper cardiologist was ok with it. I
may have worked hard at getting you moved into a transplant center more for my own
selfish needs than yours. Secondly, and MOST importantly, Only God can provide a gift
so generous as a human heart for you. I like to believe and frankly will only accept that
IF I played any part in your being with us here today is because I was the instrument or
vehicle that HE used to accomplish it. Your pain , suffering and now recovery has
PROVEN to be insiprational to SO many of your friends and family. Including me. It was in
HIS plan to use you to bring many people to re realize their faith,, to re prioritze their
liives to focus on HIM and HIS love and HIS power. You need only read your guestbook to
see this.
Please DO NOT credit me with this. It wasn’t me. You owe me nothing.
I am very glad you are here. Your niece , nephew and I thank God everyday for it.
I continue to pray for your donor’s family and pray that your donor is with their Creator if
for no other reason than giving you the ultimate gift.
Your little sis.. Sue
December 30, 2008
At four in the morning, my dad woke up the entire house by ringing the doorbell multiple times. He wasn’t
supposed to be here until 4:15. The mission: driving into downtown Chicago by 7:00am. We arrived there
at Northwestern Hospital at 5:30am. It was still dark when my dad was parking the car in the hospital’s
garage. This was a normally scheduled appointment for my bi-monthly biopsy. I had been fasting since
10:00pm the night before and, didn’t to bed until 12:00 or so.
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I wasn’t too worried about getting up so early, only because I knew that I would have plenty of chances to
sleep while in the hospital. We had to wait until 6:30 or so before the staff was even ready to check me
in. I went in to the waiting area of the lab at around 6:45. They drew some blood and sent it down to the
lab right away to test my Coumadin/INR levels). My blood can’t be too thin while they’re burrowing into
my thigh and pushing a wire up through my artery.
This has been the sixth or seventh time I’ve had one of these procedures. I don’t mind going through it, so
long as they sedate me as much as possible! Prior to being taken in, the nurses told me they would go get
my parents, but I said, “Oh no. They’re fine. I’d rather just sleep.” So, sleep I did. (As much as I love my
parents, there are times that if I were either faced with the option of spending an hour-and-a-half debating
with my dad whether there really IS such a thing as a peanut allergy (he doesn’t believe it) or putting a
shotgun to my head, becomes a real tough choice!)
At 8:30, I was wheeled into the catheter lab. I’m now familiar, I think, with everyone who works
there. They sufficiently knocked me out and the whole thing was over before I knew it.
I was taken back to my little spot where they gave me an echocardiogram. I slept through that, too. The
nurse practitioner, Kara, and Dr. O’Connell stopped in to see me down there. It sounded like everything
was looking great! He asked about the tremors, so, I held out my hand, and he saw that the tremors were
still there. He told me to stop taking one of the medications (one called Terbutaline – which, I don’t even
know what it’s for.)
It wasn’t until 12:15 (or so), that I finally walked out into the waiting room. My next order of business was
to shoot up to the 19th floor to visit the Coumadin clinic to speak to someone there. But, I ended up being
shuffled into the wrong room, where, I must have just sat and waited for about an hour. I finally asked
someone for some help, and, was told I was at the wrong place. “Oh man! My dad’s going to have a fit!” –
I was eventually led to the place I was supposed to go. – This office’s primary focus is centered around
monitoring people’s blood thickness. – Interesting. (It makes you wonder if they’ve also got a clinic for
monitoring bile.)
In any event, what was only supposed to be a couple minutes, ended up turning into 2 more hours. – I
thought, “So much for my getting lunch”, knowing that my dad wouldn’t be willing to stop, even despite
the fact that I hadn’t eaten all day.
My “thought for the day” is more of a continuation from yesterday. I had a lot of reasons, today, to
suspect that it wasn’t going to be a “fun” or “good” day filled with raucous joy and laughter. I think I’m
having slight nausea again, I was starving all day, feeling weak, getting a biopsy, and other stressful
factors. But, I realized that “happiness” is a decision that I can make independent of the circumstances
and people that surround me. Instead of letting potentially stressful situations grow and grow and then go
all Hindenburg on me, I would just remind myself that *I* am choosing whether to be mired in misery or,
let it roll over my shoulders, close my eyes, and think, “I don’t HAVE to feel this way. OTHER PEOPLE’S
PROBLEMS, are just that: OTHER people’s problems!” – They don’t have to be mine. In fact, I’ve become
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very sensitive lately to my own vital signs, such as when my blood pressure is too high or low, whether my
heart rate is too fast, etc. I feel the effect that stress has on me, and how it can cause my heart to
race. Bottom line, I am going to choose to be content, to be happy, and, I refuse to let anyone change
that.
December 31, 2008
I had to get up early this morning to get ready to see my local, primary care physician,
Dr. Tomacruz. He’s a brand new practitioner, (probably even younger than me . . . I
guess that’s nothing spectacular anymore). I can’t tell exactly where he’s from, but
he’s got an accent from somewhere. Anyway, he’s a super, super, super nice guy
who worked extra hard with my sister, Sue to help get into a decent transplant facility
that would accept me even without insurance. I wanted to see him in order to let him
know how I was doing, let him know the list of meds I’m on, and basically, just what’s
going on. He told me he learned a lot through that experience and asked me what I
learned. I told him that I learned a whole lot about the heart and heart failure,
transplants, and medicines. But, among other things, I learned that no matter HOW
young and healthy you THINK you are, you could be on the verge of death and not
even know it. I also needed his signature to get a handicapped placard for the car. He
had no problem signing it all.
My aunt’s neighbor, Sara, was extremely gracious driving me around
this morning. She even took me to the crowded DMV to pick up the thing. Who
woulda thought that the DMV would be busy on the last day of the year?? (Anyway,
thanks again Shiela!)
We went back home, and I ran a few more errands with my aunt, including a trip to the
mall, where we were able to actually use the placard in a handicapped spot – nothing
short of exhilarating, let me tell ya! I’m just hoping people don’t get the idea that they
can just come over here and “borrow” the thing because they have to go shopping –
(And NO I’m not tempted to rent it out, either . . . hmmmmmmm)
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Since it’s the last day of 2008, I thought I’d write out a list of “Lessons Learned”
2008– Lessons Learned
1 Be careful who you trust
Don’t reveal extremely personal information to someone that you haven’t established
enough trust, respect, and love for . . . you’ll never know if they’ll use it against you.
2 Make sure the person you marry is REALLY your best friend, first
3 Make decisions based on logic, not feelings (or out of spite)
Had the woman I shouldn’t have married listened to me, the house we once owned
would never have gone into foreclosure on her and she would be able to prevent the
one she’s living in from doing the same. (I normally hate to say, “I told you so!”, but, in
this case . . . )
4 Don’t let those who refuse to forgive you, drive you crazy, or . . . prevent you
from forgiving them.
5 Don’t automatically assume that all people are selfish, greedy, money-grubbing
skunks
They MAY be, but let them prove it to you first.
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6 Assume the best about people, but make them earn your trust.
7 Keep your finances separate from everyone else.
8 Invest. Invest. Invest.
9 Be careful who you designate as your beneficiaries.
10 Keep receipts
11 Don’t take what you can’t pay back
12 Don’t spend money that you don’t have
13 No matter how bad things get, never lose hope.
14 You’re never too young to be really, really sick
It doesn’t matter how healthy you might FEEL, you could be days, weeks, months
from death.
15 Don’t get married without a pre-nup
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I know this is controversial, but times have changed and it just can’t hurt!
16 Don’t even THINK about getting involved with someone with a controlling
personality.
You will be abused, used, lied to, unloved, humiliated, and blamed for everything.
17 Don’t drink too much
18 Avoid people who drink too much
19 Don’t eat too much
You don’t HAVE to eat everything on your plate. The starving people in Africa are
going to starve anyway.
20 Don’t underestimate the damaging effects of stress
21 Wash your hands . . . every chance you get.
22 Don’t get fat
23 Do cardiac exercises
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24 Don’t smoke
25 Never, never, never . . . be bored; there’s no excuse for it!
26 If you can’t count on the courts for justice, there’s always the court of public
opinion.
The narcissist fears exposure more than anything.
27 Do what you do best . . . no matter how far-fetched
28 No one can steal your dreams unless you let them
29 Hope and work towards the best, but plan for the worst
30 The first second that you THINK you MIGHT need help, you need
help.
31 You DON’T need:
· $150 hair appointments
· A $4000 wedding dress
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· A $15,000 ring
· A yacht
· All that crap in your garage.
· Burberry purses or Kate Spade diaper bags
· Giorgio Armani . . . anything
· 350 channels
· Spam
· A subscription to the Cheese of the Month Club
· Guilt, shame, or an inferiority complex
· NASCAR
· A video game addiction
· Hospital food
· A negative, pissy, winey, judgemental attitude
· Cryogenics
· More money
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32 You DO need:
· To read more
· ABBA
· WiFi
· Dignity, honor, self-respect, and self-control
· Frazier
· To watch the news
· To laugh
· Pain (at least some)
· To have friends to hang out with
· Ice cream
· A cell phone
· Email
· Faith
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· Manners
· To work hard
· To travel
· To laugh at yourself
· Long underwear
· Target
· Facebook
· To Dance

January 1, 2009
It’s 2009. Whoopi-do. For me, it didn’t come in with a bang; just sitting by myself
watching TV. But, I don’t think I would have had it any other way. Last year, (2008) I
was out with friends clubbing in Minneapolis. The year before that (2007), I was alone
in a jail room. 2006, I was in Paris at the Eiffel Tower with my German relatives. 2005,
I was playing Scrabble with my wife and two of her friends.
I woke up with that, “I’ve got that nauseous feeling . . . oh, oh, oh, that nauseous
feeling . . . “ again this morning (and, of course, the ill-effects that go along with it —
Hello 2009!) I was supposed to go with my aunt and uncle to visit with
Ethan’s family. Needless to say, it didn’t happen. My parents came over to “babysit”
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me. After a sufficient degree amount of boredom set in during the Rose Bowl Parade,
my dad made his exit, leaving me here with my mom. She sat on the couch and
watched the Hallmark channel all afternoon. (I swear, that channel must have a run on
Christmas movies since they’re still playing them!)
I did a lot of sleeping today. That seemed to alleviate a lot of the nausea.
As far as “New Year’s Resolutions” are concerned . . . I didn’t really have one, until I
just thought of something . . . I’m going to focus on finishing things that I start. For
instance, I just started reading Ayn Rand’s lifetime tome called Atlas Shrugged. By
reading some of it every day, I’ll be able to get through it.
I guess there may be another resolution, which is, more of a general goal than
anything. For 30 or more years of my life, my prevailing motivating factor was
guilt. After I met soon-to-be wife, I got sick of the guilt, and allowed myself to just “be,”
to do whatever I wanted to do without feeling guilty about it. I eradicated the word
“should” from my vocabulary. It wasn’t as hard as I thought it would be, in fact, I was
having a lot of fun, gained a lot of confidence, and wasn’t afraid of anything. (I think
the Adderall might have assisted there as well.) The life most people have during their
college years and early 20’s, I was experiencing during my mid-30’s. The reality is, I
probably went too far. Now, I need to let the pendulum swing more the other
way. But, how “far” is really a mystery to me. Again, a Christian would say that
“there’s freedom in Christ” — I never really felt that way, honestly. I don’t deny it’s
more of a responsible lifestyle, and, the consequences of living it are
minimal. However, when we say that “living in sin” or “apart from Christ” we are
actually “slaves to sin” is not something I can say I understand. The consequences of
doing so suck, but, if “happiness” is the measure of a “better life” then I guess I would
disagree. There’s a lot of judgmental attitudes that seem to prevail in Evangelical
circles – you’re looked down if you swear, smoke, drink, don’t go to church, wear the
wrong clothes, have a lot of “secular” friends, etc. It seems to me that there’s some
kind of slavery in that, too.
I guess what this tells me, is that, “happiness” is not an endeavor worth
pursuing. Despite the founding fathers’ words, I think it’s really a very
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secular attitude. “Pleasing Christ” would be the true motivator, which, in the
end, would yield happiness. I guess that’s still where the elusiveness lies. —
There’s a lot more to “unpack” there, but I’m pretty tired now.
January 2, 2009
Ethan (my uncle) and I are getting further and further on this puzzle we bought last week. I’m surprised at
how long it’s taking. These doggoned pieces are incredibly deceptive. (I’ve never met a jigsaw puzzle that
lies to you!)
I’m not exactly sure what it is, but I’ve been tired a lot lately and needing a lot of sleep. I’ve been eating a
lot more carbs than I’m used to; that might be it. Fortunately, though, the nausea I was having a couple
days ago is gone. (Knock on wood!)
I realized, way too late, that I was supposed to go into St. Anthony’s Hospital in order to get some blood
drawn to test my INR levels again. (Again, that test tells the doctors how thick my blood is. Evidently, I
still have some clots that we’re waiting to dissolve or be absorbed back into my tissue. The Coumadin I’ve
been taking every night is supposed to keep my blood thin enough so that more clots don’t form.)
My friends from Minneapolis are going to be hosting a benefit for me at the end of the month (January
31). Kristin Benda seems to be the one putting it together and she has asked me to send out some notices
on Facebook. Another thing I need to add to my “to do” list. (Along with sending out the rest of my
Christmas cards!)
No matter what seems to happen, the bill collectors seem to keep coming! Even when you tell them
you’ve been hospitalized for the past few months and that you LITERALLY don’t have a dime to your name,
like a mad mob of zombies with their arms stretched out, THEY . . . JUST . . . KEEP . . . MARCHING . . . IN . . .
EERIE SYNC . . . RIGHT . . . TOWARDS . . . YOU, mumbling the ghastly mantra, “WHERE IS OUR
MONEY?” — Trying to squeeze blood out of a turnip seems to be a waste of time to me. So, I’ve been
working rather diligently to locate an affordable bankruptcy attorney. Also, since I haven’t been receiving
ANY income, the state of Minnesota has been totally unable to garnish my wages in order to pay my child
support obligation. So, I’ve also got to submit a new motion in order to have that lowered from an
outrageous $1500/month (something the ex had the gall enough to say was a ‘minimal’ amount!) to
something much, much less. I’d sure love to be getting that amount myself!
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This evening, my friends Tony and Michele Raymond, who live about 1.5 hours away from Rockford, made
a special trip out here just to take me out to dinner. I’ve REALLY been in the mood for something more
“ethnic” (I’ve been eating nothing but American food since going into the hospital!), so, we went to this
nice, new Thai restaurant that’s pretty close by here. I had some cashew chicken that was really not too
bad! Tony and Michele also brought over their 6-year-old daughter, Evelyn. She was very sweet, but she
wasn’t much of a fan of the Far Eastern cuisine and settled on bacon-wrapped shrimp (something I can’t
say I’d ever seen in Thailand when I was there!) – Thanks a TON Tony, Michele, and Evelyn! I had a great
time with you!!
January 3, 2009
**************** NOTE *******************
I just wanted to send out a quick note for my friends in the Minneapolis area. Members
from Evergreen Community Church are hosting a benefit on my behalf on January 31. I
am going to do my best to make it up there myself.
There will be more details to follow but we just wanted to make sure to send out a “Save
the Date” announcement!
Thanks and God bless!
******************************************
As I indicated on my Facebook status this morning, I got served breakfast in bed this morning . . . by my
uncle! Other than when I was being held captive by catheters and IV tubes, I can’t remember the last time
ANYONE brought me breakfast in bed . . . eggs, bacon, toast, coffee.
My dad later came over, the man who’s never stirred a pot, baked a potato, or even tossed a salad. I told
him, “Hey guess what, Dad? Ethan made me breakfast in bed. Have YOU ever done that for
someone?” His emphatic and immediate, “No!” was followed by a wince as if I’d just asked him if he’d
ever drilled for oil in Alaska. My response was, “Gee, at whose place would I rather live???”
I accidentally took one of the Terbutaline pills today. It made me shaky this afternoon.
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I spent most of the rest of the morning working on the puzzle with Ethan. I had some slight physical
discomfort today with minor abdominal pain. I took a bit of a nap this afternoon, which seemed to resolve
the issue.
I’ve been pretty lonely lately. Now that I’m getting healthier and healthier, I’ve been craving more
interaction with my friends. I think it would be great to get married again someday. I wouldn’t say I
haven’t been TEMPTED to look for a compatible Christian woman online again, but, since my previous
experience with eHarmony ended up in a train wreck, I’ve been somewhat reluctant. (Evidently, the “29
dimensions of compatibility” aren’t good enough. I would suggest an additional test to weed out those
with disturbing personality disorders. “In one of your fits of rage, have you ever thrown a gallon of milk at
someone? If yes, please explain. – Well, it wasn’t a FULL gallon of milk.”
As I’m sitting here, it’s thundering out!. It’s the beginning of January and I’m dodging lightning
bolts! What’s up with that?
My aunt and uncle had to go out tonight, so, that left me without a babysitter. Luckily, Sue was free. She
wanted to take me to another Thai restaurant somewhere out in Bumble-F Egypt – I think it was
Machesney Park, but it looked nothing like the Machesney Park *I* used to know. It was actually a very
quaint yet elegant place. They really did a great job with such a small space. Most noticeable were these
circular booths right in the middle of the dining room for larger groups. I was very impressed! I had green
curry with chicken and ordered it extra spicy. It came to the table, and I could barely taste the spice.
We then drove across the street to Target and bought an SD card for my aunt. She received a camera
from her daughter, (my cousin), Connie for Christmas. But, there was no card in it. She was sadly
disappointed a couple days ago when she attempted to use it during a family function and it told her it was
out of memory.
By the time Sue and I drove back home, they had already returned.
January 5, 2009
Dang, I can’t believe it’s 2009 already! For the past few days, I’ve been
dealing with abdominal pain. I wouldn’t say it’s the worst thing in the world
that could ever happen, but the constancy of it is what is most
irritating. The same is true with the chest pain. According to my dad, who
has also had open heart surgery, that pain never really goes away.
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When I woke up this morning to take my vitals like I do every morning, my
blood sugar was fairly low at 77, but, that’s normally what it is. And, my
blood pressure was more or less normal. After taking my morning pills, I
went and ate a large bowl of Frosted Flakes (well, if I would have only taken
a normal-sized amount, there would not have been enough in the box for
another normal-sized bowl, so, I just turned it into a big bowl!) Well, while I
was getting ready to go to the hospital for my regular blood test (again,
checking my blood thickness), I started feeling a little faint again, which
meant my blood pressure was low and that my insulin levels shot way up as
a result of eating too much sugar all at once.
My aunt and I drove over to St. Anthony’s. The temperature was . . .
frigid. She dropped me off at the front and I walked in to pick up the beeper
thingy. I guess these things have replaced the “take a number, please”
technology I grew up with (oh, the only exception would be the DMV).
It was difficult for the nurse to draw my blood. As I’ve mentioned in
previous posts, my veins are all hardened and resistant to needles. I was
thinking that with the couple weeks that have passed without my veins
being stuck, they would have softened up by now. But, they really
didn’t. They had to resort to using a very small needle, called a “butterfly.”
We then went over to my parents’ to see if we could find my Medicaid ID
card. It wasn’t there, and there was a big discussion about that. That was
followed by a brief trip to Walgreen’s to get some of my pills refilled.
I got into an interesting chat discussion with someone lastnight about the
difference between someone making up “excuses” vs. providing
“reasons.” I was arguing that there certainly IS a difference. Someone who
makes a bad choice, for example, he leaves his cell phone in a
restaurant. He comes home and his wife finds out.
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“Where’s your cell phone?”
“I don’t know. I must have left it at the restaurant.”
“This is the third time this month!! What’s your excuse this time?”
“Well, I took it out when my boss called, chatted with him for a few minutes,
and then just set it back on the table. I must have walked out without it.”
My question is, is that an “excuse” or an “explanation”? Is this guy claiming
that he’s NOT responsible for leaving the cell phone there, or, is he simply
explaining what and how it happened? I’ve often provided explanations for
my bad decisions, but never considered them to be excuses! I’ve been
mystified by the responses of others who interpret my explanations as my
feeble attempts to seek justification for my behavior. This leads to another
interesting question. Can one person’s explanation for a bad decision, be
the result of another person’s bad choice?
January 6, 2009
UN-BELIEVABLE!
Here I sit, on another transformer bed at Northwestern Hospital. How did
this happen? Who would do this to me again? Five hours ago, I was sitting
peacefully at home, innocently munching on a taco, the next thing I know,
I’m being driven to Chicago!
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Earlier this afternoon, the nurse practitioner, Kara, called me. She told me
that the Prograf levels from the lab results that were sent in yesterday is
pretty low. (Prograf is one of the anti-rejection medicines I’m supposed to
take.) It turns out I missed a couple days without taking it. This didn’t
please Kara at all. After checking with Dr. Cotts, she called back with the
dismal news, but, not before taunting me with questions like, “How’s your
blood pressure, been?” And, since I’ve been keeping METICULOUS track of
all my vitals religiously, I went into my bedroom and read my records off to
her. She then asked me about how my pulse has been. She then had the
audacity to act as though she was pleased with the numbers I was giving
her, all the more building up my hopes that I wouldn’t have to be hauled
back into the hospital. I’m thinking, “Whew! This is looking good!” as I’m
reassuring her that I had readjusted the pill box. Then . . . she drops the
bomb,
“Well, Mr. Berg, I’m afraid we’re gonna need you to come into the
hospital. We need to make sure there hasn’t been any rejection, so we’ll do
an echo, put you on an extra dosage of prednisone . . . yada, yada, yada, “
“Uh huh, uh huh, uh huh”, was my only mindless affirmative responses.
“So, pack some stuff and come in through the emergency room.”
“Uh huh, ok. bye.”
With phone still in hand, I wandered back into the kitchen where my aunt
and my parents were, without taking a blink and laid the bad news on them,
“Well, I gotta go back to the hospital . . . . NOW!”
It was 2:30ish, and, I still hadn’t eaten lunch. My mom and dad had brought
over a picnic basket-full of tacos, so, I asked if I could have one. My mom
stuck ‘em in the microwave, which, when I opened it up again, found a
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couple soggy hard-shells filled with glops of lettuce, a teaspoon of beef, and
a couple sprinkles of cheese. I took a bite and said, “Nevermind.” My dad
was quick to consume the scraps, “We don’t wanna waste any food!” — One
of his many mantras, one that, fortunately has not poisoned my mind, yet.
I got my stuff together, and we left. My dad must have been told to be nice
to me because I wasn’t too happy about leaving and, he wasn’t trying to
agitate me with some meaningless argument.
After 3 tolls, a few laughs from the Roe Conn show who was satirizing the
sorry state of Illinois politics, and a short nap, we arrived in downtown
Chicago. I sat there looking into all the shops, restaurants, and bars with
nostalgic fondness – “Wow! Business people out and about, laughing,
hanging out with friends, spending money, after a hard days’ work . . .
sigh.” Up until last April, that was me!
It took my dad several left turns, complaining about how the “Emergency
Entrance” signs weren’t visible enough, before finally pulling into the
driveway which was tucked away in an obscure side of the Northwestern
complex. As I was stepping out of the Mitsubishi, I looked to the right and
noticed the driveway where the ambulances were lined up, remembering
the day I first arrived here – October 25th.
My dad pulled out my bags, set them on the curb, and just as if I he were
dropping me off at the airport, I walked into the Emergency room with my
bags and my trusty cane. I checked in and had to wait there for about an
hour. While I HAD been depressed when I was first told that I was going to
be admitted again, the idea ceased to be such a horrible alternative, so long
as it won’t be for more than a day or two.
As I was sitting rather mindlessly in the waiting room for my name to be
called, I watched as people were coming and going. I wondered how many
of them were really here out of necessity, or just feeding their
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Munchausen’s Syndrome. (“ER abusers . . . what a waste of time and
money! I’ll bet that guy doesn’t really need to be here. They’ll pretend to
treat him and then send him home.”
On TV, a well-timed Lipitor commercial came on, “What a wake-up call! I
had a heart attack at 59” said the actor. “What was I thinking?” As the
voice-over guy was warning the listeners of the many reasons why you
SHOULDN’T take Lipitor, scenes were splashed in front of us of the same
actor living in a very comfortable home, riding his bike with loving family
members through the woods.
“Hmmm”, I thought to myself. “This guy is 20 years OLDER than me. He
considers a heart-attack a ‘wake-up call.’ But, it doesn’t look like his life
really changed all that much. He didn’t have to move, still living a nice life,
not facing bankruptcy or getting over a divorce.” (Whine, whine, whine,
sigh, sigh, sigh, poor me, poor me . . . why doesn’t someone just shoot me
now? –)
The other sentence the guy made was, “What was I thinking?” Now, who
wouldn’t find that slightly offensive? This guy was obviously poisoning his
arteries and not getting enough exercise and naturally ends up having a
cardiac arrest. Then there’s me, 20 years younger, working out, in great
shape, eating like a New Age whacko, and end up with advanced congestive
heart failure!
After they were finally able to figure out why I was there, (apparently,
another communication gap between the doctor’s orders and my actual
location had occurred . . . luckily, I brought a book with me into the ER
room.) After 2.5 hours, I was finally moved up to the 15th floor! That was
kind of a shock, because I had never been up there before. I can tell it’s a
regular, REGULAR floor, because 1) it’s carpeted, and 2) my nurse, Lacey,
has no clue how to pronounce some of the meds I’m taking. She had to ask
me.
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I’ll probably only be kept here overnight and then let go again tomorrow
afternoon. (“Yaaay!”)
It’s after 2:00 am, and I think the Ambien is starting to work.
I like how my rubber-studded footies match my pajama pants so well.
January 7, 2009
Had a couple tests done today, including an echocardiogram. Don’t know the results yet.
I’ll hold off sending an update until the docs come in here tomorrow morning.
(Obviously, I’m still in the hospital.)
January 8, 2009
Not sure if Steve is going to be able to update the journal tonight so just incase he isn’t..
Here is the bland
version. Hopefully he can provide the high colored version complete with photo’s soon.
Steve was admitted because somehow with all the chaos, Steve managed to miss quite
of few of his anti rejection meds. He had assured us that he had a handle on it but
apparently there is still some disconnects and we promise to keep a much better eye on
it.
The bottom line is Steve nearly killed himself (accidently). An extraordinarily STRICT
regimen of the pills are required for his survival. The problem is they adjust these pills
constantly and he has to start from scratch! He spends hours refilling all the little pill
boxes for the week. There are about 30 pills per day taken at 4 intervals throughout the
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day and 1 minor change and there you go.. we start over.. This is how the important anti
rejection pills were missed! (Couldn’t have been the vitamin right?)
Steve’s blood thinner medicine was extremely high too! His blood must have been like
water! I knew something was wrong because last Saturday when we went out he kept
mentioning that he would tire even more easily than before and he became light headed
after a short browse around Target. It seems to me if your blood is like water and can’t
carry oxygen around than your blood is too thin..
Steve may be able to come home tomorrow which I’m not happy about because I’d like
to see them do the biopsy procedure to check for rejection before releasing him. They
won’t know how the heart was affected until this is done. Who cares what I think. If he is
released I will pick him up Friday evening.
January 8, 2009
Not sure if Steve is going to be able to update the journal tonight so just incase he isn’t..
Here is the bland
version. Hopefully he can provide the high colored version complete with photo’s soon.
Steve was admitted because somehow with all the chaos, Steve managed to miss quite
of few of his anti rejection meds. He had assured us that he had a handle on it but
apparently there is still some disconnects and we promise to keep a much better eye on
it.
The bottom line is Steve nearly killed himself (accidently). An extraordinarily STRICT
regimen of the pills are required for his survival. The problem is they adjust these pills
constantly and he has to start from scratch! He spends hours refilling all the little pill
boxes for the week. There are about 30 pills per day taken at 4 intervals throughout the
day and 1 minor change and there you go.. we start over.. This is how the important anti
rejection pills were missed! (Couldn’t have been the vitamin right?)
Steve’s blood thinner medicine was extremely high too! His blood must have been like
water! I knew something was wrong because last Saturday when we went out he kept
mentioning that he would tire even more easily than before and he became light headed
after a short browse around Target. It seems to me if your blood is like water and can’t
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carry oxygen around than your blood is too thin..
Steve may be able to come home tomorrow which I’m not happy about because I’d like
to see them do the biopsy procedure to check for rejection before releasing him. They
won’t know how the heart was affected until this is done. Who cares what I think. If he is
released I will pick him up Friday evening.
January 9, 2009
(Since Sue snuck in here yesterday behind my back, I have gone ahead and
filled in some extra interesting material . . . at least *I* think so, anyway 🙂
Here’s Thursday and Friday’s entries from me:
Thursday, January 08, 2009
OK, even though I SHOULDN’T be, I’m actually in pretty good spirits! I’m
trying to make sure I keep it that way, too. I’m STILL stuck in the hospital
for another night, EVEN THOUGH I was promised earlier today that I was
going to be let go.
After their rounds earlier today, Dr. Cotts and others, said they didn’t really
see any reason to keep me here, and, I was told that I could go home
today. So, I waited a couple more hours into the afternoon, (my aunt had
agreed to come and pick me up), and then asked the nurse to find out from
the doctor what’s going on. She paged him; he called back and basically
said that it was ok. So, I informed her that I was going to go ahead and call
my family. She gave me the nod. Not less than an hour later, after I had
called my aunt to come and get me, I had to call her back to tell her to
forget it. She was already in Schaumburg, and then turning around at
Woodfield Mall. I felt really bad.
They wouldn’t budge even after I INSISTED that they let me go, but,
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apparently my INR levels were still too high. (i.e. my blood was still too thin,
5.8 something. It’s supposed to be between 2 and 4). Anyway, such is my
life. The doctor making this call, said it was way too risky to let me go with
my blood being that thin. (God forbid I get a paper cut and bleed to death –
not funny, I know.) For whatever reason, at the last minute, this one other
doctor whom I’d never met before, (he was from India and his name was
actually “Dr. Gaddam,” I swear to God!) who did, at least, have the courtesy
to come into my room, put the kybosh on my hopes of getting out of here
again. What ticks me off is, I wasn’t even called back in here because of the
blood thinner thing.
Sometime in the early evening, I was feeling a bit rambunctious, and was
trying to think of some creative ways to cause havoc on the floor. That’s
when I saw my aunt’s new camera. A mischievous grin came across my
face as I walked into the hallway, pretending to take a walk. I was able to
get a bunch of candid and not-so-candid shots of a lot of the people who
have helped save my life (as well as cause me a whole lot of grief!) over the
past several weeks!
So, after my photo-shooting rampage, I caught three “pseudo-psychiatrists”
suspiciously peering into my empty room. I snapped a picture of the
culprits (see Facebook photos) and ran down the hall (first time I had done
THAT in several months!) I found out, these kids have yet to choose a
medical specialty and have to spend several weeks “playing the field” of
several different specialties before being able to land on one they
particularly like. These three were presently toying with psychiatry. I
invited them into my room, sat on my robo-bed (these beds here are
possessed, I KNOW IT!), and allowed them to entertain me for a few
minutes. (Well *I* sat on my bed. They stood around it as they talked at
me.)
After confirming that I had been on anti-depressants (a direct result of my
recent divorce – hmm, do you smell tort baking?), one of the whippersnapping
interns, in an attempt to show off his brilliance, asked me, “Have
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you ever,” (I CAN’T STAND questions that start out that way), “had a week
where you felt like you had a LOT of energy . . . “ This was only to be met
by my asking him, “Do you mean am I manic-depressive? No, I’m not bipolar.”
That shut him up pretty quick. (C’mon! Who hasn’t had Psych
101?)
Anyway, the whole deal with these guys was how to deal with my ADD that I
had been diagnosed with back in early ’06. They informed me they would
take this up with some other “more official” psychiatrists, on the consult
team, and would get back to me. But, all I really cared to know was, when
was the Gaddam doctor gonna let me outta here! (Ooops . . . pardon my
Indian!)
Friday, January 9, 2009
It looks like the scare of my not having enough Prograf/Tacrolimus was not
as serious as they thought. Dr. Cotts came in with his usual crew . . . as
usual. My breakfast was stone cold . . . as usual. I was sound asleep . . . as
usual. He’s the one that told me the cheery news.
The only thing that kept me there were the elevated Coumadin levels . . .
and, I can only guess, the staff’s ravenous craving to see my smiling face
incarcerated on 11 West again. (Speaking of which, I’ve posted a bunch of
pics of my captors and the wing I was being held in on my Facebook
page: just look up Steven Berg until you find a profile with my picture.)
The nurse practitioner, Kara, knocked on my on my door and walked in
without waiting for a response,
“Good morning, Mr. Berg!”
“Oh God, now what,” I thought.
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“Do you wanna go home.”
“Yeah”
“OK, you can go home.”
“Lovely,“ I thought again, “It’s snowing like cats and dogs and the only one
who can pick me up today is Sue, which won’t happen maybe until 8 or
9pm.”
“Great!”, I said. After she left, I didn’t know what else to do. The French
toast was cold and soggy; my stomach snarled at me as I dared to entertain
the thought of eating it, even only for half-a-second. “Oh shut up! I won’t
do it!” I thought as I slammed the lid back down on the entrée. I then
turned the TV down, but still loud enough to hear the soothing sounds of our
governor getting impeached, and rolled over, let a smile careen on my face
as I snuggled into the sheets and fell back to sleep.
At about 11, that same slew of pseudo-psychiatrists from yesterday walked
into my room, but, this time, they brought a friend! . . . a REAL psychiatrist
whose name I never caught nor did I ever care to – a nice, little chubby, guy
from China. (Don’t worry, I was courteous enough to smile back . . . even
though they had woken me up from my dogmatic slumbers.) He was
actually FROM the consult team, an actual psychiatrist (or, psychiatrist
wannabe, something the other three weren’t!) He basically confirmed what
the pseudo-psychos told me yesterday, which was, they didn’t see any
problem with putting me back on some ADD meds, but, they were going to
have to take it up with more people. (NICE! They had to wake me up just to
tell me that?) – I swear, these people sometimes act as though you should
be thrilled and honored that they’re gracing your presence with their
own. And, maybe I should! But, I don’t know that. “Just give me your
autograph now, leave it quietly on my table, and when you become rich and
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famous someday, I’ll just sell it on eBay! That way, I can continue counting
sheep, and you can carry your proud grimace to other patients who might
actually give you the reverence you think you deserve. How’s THAT for a
‘win-win’? ” . . . or, maybe I’ve been watching too much House . . .
One of the kids, who seemed to like chatting with me and was giving me all
of this unsolicited advice on what Metra trains I might be interested in
hopping on that could take me as far northwest toward Rockford as possible
since I was looking for a ride home said it should only cost me 6 or 7
bucks. But, wait, I’d also have to walk several blocks “as the crow flies” –
(he actually said that), through the blizzard in order to get to the nearest
train station.
“BUT,” his eyes lit up, “You COULD take a cab there, which would only cost
you another 6 or 7 bucks . . . “
“Ummmm . . . I think I’ll just wait for my sister to come pick me up, later on
today, thanks!”
He proceeded to tell me that he wanted to go into Rheumatology.
“Fascinating,” I lied.
I thought to myself, “Whatever, dude! Go hop on your merry little
rheumatological career path. Right now, I’ve got baggy pajama bottoms
creeping into places I’d rather they not.”
I hung out for most of the rest of the day. I had a few more visits with more
people. Took some more pictures. Decided I was sick of the gown and
hospital-get up and put on my street clothes. I forgot, though, that I had
another echo-cardiogram scheduled to see if the former blod-clots that were
in my arms were still there. They weren’t, so, hopefully, I won’t even have
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to deal with this Coumadin stuff anymore!
Sue showed up at about 5:45, and we were off! Now, I’m at home, ready for
some uninterrupted sleep and another, uneventful, relaxing weekend!
January 11, 2009
Since I’ve been back out of the hospital, I’ve been faced with a fairly
uneventful weekend. I’ve been very nauseous, especially after eating. My
stomach just doesn’t seem to want anything in it, since it’s constantly
complaining every time a foreign substance comes down into it. So, I’ve
just been very uncomfortable. About the only thing I’ve been able to do is
sleep, take pills, and put puzzles together. Now and then I’ll try to eat.
I’ll have some more to post later!
January 12, 2009
According to the following article, I was one of roughly only 2100 people worldwide to
receive a heart transplant last year. (Actual statistics for 2008 are not available yet).
It also indicates that only people suffering from severe heart failure are added to the
donor waiting list and that most people wait several months or YEARS on the list before
receiving a new heart. I only had to wait 3 days.
.
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When Is a Heart Transplant Needed?
A heart transplant is a major operation during which a recipient’s heart is removed and
replaced with a donor heart.
Heart transplants are performed when severe heart failure isn’t improving with other
treatments. Heart failure occurs when the heart muscle becomes progressively weaker,
reducing its ability to effectively pump blood throughout the body. Since blood carries
oxygen, and all of the body’s organs and tissues require oxygen to function properly, the
condition can become life-threatening.
Any medical condition that causes the heart muscle to grow weak can result in heart
failure, including repeated heart attacks, high blood pressure, diseases that affect the
heart’s valves, infections, damage to the heart muscle (from alcohol or drug use) and
congenital heart defects (structural abnormalities that babies are born with).
How Are Donor Hearts Allocated?
Unfortunately, there are many more patients who could benefit from a heart transplant
than there are available hearts. About 2,660 people are on the heart transplant list; just
more than 2,100 heart transplants are performed yearly.
Since there are more people who need heart transplants than the number of available
donor hearts, a careful process is used to determine whether someone should be put on
the waiting list for a heart. This process is carried out by a transplant team, which
generally includes a heart doctor (cardiologist), heart surgeon, transplant coordinator,
social worker, dietitian and psychiatrist. These professionals evaluate potential heart
transplant candidates through as series of interviews and medical testing to see that
that they meet a number of strict criteria:
Their heart disease needs to be advanced enough to be truly life-threatening
(most transplant candidates are considered to be at risk of dying within the next
one to two years).
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Other treatment possibilities have been exhausted.
They must be physically healthy enough (with the exception of their weak
heart) to endure the operation.
They must be psychologically strong enough to handle the stress associated
with a heart transplant and the kinds of lifestyle demands that are required
after heart transplantation.
Certain conditions prevent an individual from being placed on the waiting list for a heart,
including:
Age older than 70
Problems with blood circulation
Severe kidney, lung or liver disease
Untreatable high blood pressure in the lungs (pulmonary arterial hypertension)
Cancer
Psychological or emotional problems that would interfere with the individual
adhering to the lifestyle changes required after a heart transplant, including
lifelong use of medication
Certain infections
Once the transplant team has approved placing an individual on the transplant
list, their information is entered in to a national registry called “United Network
for Organ Sharing (UNOS).” This organization maintains a waiting list of
transplant candidates for all types of organs. When an organ becomes available,
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anywhere in the nation, strict guidelines determine which candidate on the list
will receive that organ — UNOS has a mandate to avoid any bias because of a
potential candidate’s financial situation, social standing, gender, race, religion
or other personal, nonmedically relevant status.
How Long Is the Wait for a Heart Transplant?
Awaiting an appropriate heart can take several months to several years. Unfortunately,
some people don’t survive the wait. Others are removed from the list when they develop
a condition that excludes them from receiving a heart transplant (such as a severe
infection, cancer or a stroke). Once they have made a sufficient recovery, they may be
able to be put back on the list.
Hearts become available when another individual has been declared brain dead, perhaps
because of a head injury after a car accident, gunshot wound or brain bleed. In these
kinds of situations, the donor’s brain injury may be severe enough to cause death, but
the heart may be perfectly healthy. A donor is identified when he or she has previously
signed a wallet card or driver’s license sticker expressing a desire to donate organs in
the event of death, or when family members request that their loved one’s organs be
used for transplantation.
What Happens When a Heart Becomes Available?
Patients who are on the transplant list carry a pager with them at all times, so they are
available at a moment’s notice to report to the transplant center. When a donor heart
becomes available, time is of the essence; UNOS is notified of the availability of a donor
heart, and the waiting list is evaluated. The ultimate recipient is identified by
A tissue match – To make sure that the recipient’s body doesn’t identify the
organ as foreign and attack and destroy it, certain chemical markers in the
donor’s and recipient’s blood and tissues must be compatible.
How critically ill the potential recipient is – UNOS tries to get the organ to
the sickest patient first.
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Size – The donor and the potential recipient must be of reasonably similar
height and weight.
The heart transplant operation takes about four hours. A bypass machine is used to keep
the recipient’s blood oxygenated while his or her original heart is removed and the donor
heart is sewn in to place. Recovery from the operation can take some time. Most heart
recipients have been quite ill for some time before the surgery, so they need to
recuperate and rehabilitate from their lengthy illnesses, as well as from the surgery
itself. They also need to learn about the medications that they’ll be taking to prevent
their body from rejecting the new heart.
According to the National Institutes of Health, about 88% of heart transplant patients are
still living one year after surgery, 72% are alive 5 years after surgery, about 50% are
alive after 10 years and 16% are alive 20 years after a heart transplant.
http://heartdisease.about.com/lw/Health-Medicine/Surgery-therapy-and-procedur/All-
About-Heart-Transplantation.htm
January 13, 2009
OK, so my greatest accomplishment today: I climbed up a regular flight of stairs FIVE
times today! It was the first time my legs had done that (successfully!) in about 4
months!! My legs are just toothpicks right now, and I got winded and fatigued fairly
easily, but, I took my blood pressure and pulse immediately afterwards. My heart rate
was only at 106 after the ordeal! (I remember a time when my RESTING heart rate was
at 120!) — So, although it was a small one, I definitely had a strange sense of victory,
almost as strong as when I finally completed my Master’s thesis.
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Since I’ve had a couple days being nausea-free, I’ve been taking advantage my clear
sense of mind by taking care of some nasty business: my mountain of unpaid bills! It’s
looking pretty sad. On the one hand, I’m a little daunted by the prospect of filing for
bankruptcy, but on the other, I know there will be a definite sense of freedom attached
to it. My sister re-assures me that future creditors will definitely be more forgiving of the
bankruptcy on my credit report considering my extremely rare extenuating
circumstances.
On that note, though, I do have several expenses that will not be covered by the
bankruptcy, Medicaid, and disability. Which means, i will need to appeal to those who are
able to help me out through the charity that Sue and I are setting up. We’re finally able
to set up the fund and to begin collecting regular donations.
– Although totals have not yet been calculated, I will definitely have medical copay
expenses that I will be responsible for, which are already in the thousands.
– I also need a cell phone. I found out today that I owe T-Mobile over $1000 and that they
have totally cancelled my account. I’m hoping to get on my sister’s family plan, but the
increased monthly expense that will be incurred is an added expense on her part.
However, I need to be able to have Northwestern Hospital able to contact me at any
time. As I become more independent, there’s not always a phone nearby that I cacn be
reached at.
– I also have some ongoing basic, living expenses that need to be covered.
If anyone would like to consider contributing to this fund to help me (and my family) get
me back on my feet, regular monthly donations to the charity would be extremely
appreciated! (The link posted on the Welcome page will allow you to make
contributions.)
On a final note here, for those in the Minneapolis area, members of my former church,
Evergreen Community Church in Bloomington, Minnesota will be hosting a benefit on my
behalf on January 31! It promises to be a good time and I hope you will be able to attend.
An eVite from Kristin Benda and Mike Fix has already been created and I will be sure to
add everyone on this distribution list to it tomorrow to make sure no one has been
missed!
Thanks everyone! (I’m sorry for the shameless requests for money, btw).
God bless,
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– Steve
January 14, 2009
Everyone hurts someone
We are all abusers, to some degree
But consequences aside,
A truly penitent heart, deserves to be set free.
‘
I wrote that a few days as the result of a realization while contemplating my own guilt
resulting from the pain and suffering I’ve caused others in my life. I then found a strange
solace in the fact that others have hurt me. The difference being, however, I never hold
grudges. I wear my trust on my sleeve. I give it away too quickly sometimes. However,
did not Christ command us to forgive those who have wronged us? He NEVER gave an
exception. But, the toughest one I can’t seem to forgive too easily are those who have
narrowed the scope of sin too much and wind up alienating those whom we could have
found great value in, in the future. Those who refuse to forgive are only doing
themselves in. I KNOW that *I* am forgiven by the only One by whom forgiveness
matters. At that, I should be content enough. And with that, I should find the much
needed strength to forgive those who do not even believe they need it.
I have to drive in early to Chicago tomorrow for my scheduled biopsy. So, I’m fasting now
for the next 14 hours or so. These things always make me nervous because I could so
easily be re-admitted.
Please pray, too, that no dangerous levels of rejection can be found!
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January 16, 2009
I’m really, reallly excited!
I’ve been trying to organize my room at my aunt and uncle’s place since, up until now,
I’ve really only been utilizing half of it. (I’ve been either too weak, cold, busy, tired, or
lazy to do it beforehand). So, I happened to come across some old CD’s. After clearing
away the dust, and thumbing threw useless fossils with the ominous word “Disco” written
on them (strangely, still in their original bubble-wrap!), I did find some real, timeless
gems: Christmas Music!
Since I felt so jipped (sp?) this past “Christmas season, I thought, “Hey, I don’t care if it’s
4-billion days until Christmas, I wanna hear this now.” Since I don’t have CD player in my
room, I glanced over at my Toshiba TV/DVD player and thought, “Hmmm . . . . I wonder” I
pulled out the Golden Girls Season 1 dvd that was left in there, and popped in the
Christmas CD. After 10 seconds of hopeful doubt, I suddenly hear Jingle Bells emanating
from the TV speakers. (OK, OK, so it doesn’t take much to amuse me! I know you’re
thinking, “This guy either needs a job or a date!”)
Well, so I had my biopsy yesterday. My aunt and mom drove me at 5:00am to downtown
Chicago. It was still totally dark outside. We made pretty good time considering we were
driving into the big city. Luckily, Northwestern is really easy to get to once you get
downtown off of 90. It was just after 6:30.
The check-in lady on the 8th floor, still wrapped in her winter coat, looking like she was
about ready to ski down the staircases, knew who I was right away. “Mr. Berg?” This
instantly put a smile on my face — hopefully not emphasizing any latent insecurity I
might be unsuccessfully hiding at the thought of a total stranger actually remembering
me. “I always remember my patients!” she gloated. She handed me my number, and we
walked back to the waiting area.
I plopped down on one of the chairs. NO ONE else was there. In less than 5 minutes, I
heard my name called, and went to my assigned parking spot in the cath lab. There,
they don’t have actual “rooms” for you to wait in. You’re just given a bed among several
others placed in a big room separated only by curtains.
I knew instantly what to do. Take all my clothes off and put on the flimsy gown. They
took my blood, and I waited. I was expecting to wait a whole lot longer, but the
echocardiogram people (they’re called “Sonographers” . . . who grows up and tells
people they want to be a “Sonographer” some day?”) Anyway, it was now 7:30 and I was
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scheduled to go in for the biopsy at 8:30. Normally, that’s how long an echo is supposed
to take, this one was different, it took an hour and a half — longer than the biopsy ever
takes!
So this guy, Michael (who is constantly chewing his tongue, like my grandma used to do
— something she stopped doing when she died in 1981), and his trainee, Leighton (LOVE
that name!), came to fetch me. In my disappointed ignorance, I thought they would
wheel me down the hall. NOOOOOO, they expected me to WALK! Fine! Anyway, I felt
sorry for poor little Leighton, who couldn’t have been more than 22 as he had to listen to
the mindless ramblings as Michael, (nice guy, but one who loves to show off his
knowledge and experience) went on and on and on. It was like the whole purpose of the
two of them being there was for their tutoring session and I was just mindless doll with a
beating heart. In the meantime, I’m lying on this cold, narrow cot, uncomfortably on my
side, with my left arm stretched over my head so they had easy access to my heart. —
At 7:45, as I listened to Michael rattle off the agenda of the number pictures they needed
to take, I thought to myself (“Oh God, this is going to take forever!”) At 8:25, my left arm
had fallen asleep, and my bony hip and legs were scraping against each other. I wanted
so bad to turn over. Every time I slid closer to a flat position, Leighton would motion with
his hand to move closer. In protest, I started sighing — I didn’t want to sound like I was
complaining, but, I happen to be fond of my left arm and having it fall off due to
constriction is not something I was willing to tolerate.
8:40 rolled around, and Michael actually had the nerve to start chastizing Leighton and
trying to rush him because they were running late, “He’s due for the next procedure at
8:30. If we don’t hurry, they WILL come knocking on the door!” Anyway, it was finally
over at 8:50.
I quickly got ready, and walked with them back to the cath lab, climbed into my bed, and
waited some more. I think there was only one other patient in the room with me. I’m not
sure what time they walked me into the operating room, but it was definitely over before
I even knew it.
After the procedure, I was taken back to my bed, where I dutifully slept, and slept, and
slept, and slept. My two hours of mandatory bed rest turned into four! My poor mom was
waiting for me. We had both been looking forward to having a nice lunch and then later
one, I was hoping to be able to stop for dinner when my sister came to pick us up after
work. Well, that plan was shot. At 2:00ish, I finally woke up to my mom’s voice in my ear,
“Steve! What are you doing?” (“I’m putting the final touches on my plan for world
domination, Mom, what does it look like?”) I guess I was expecting the staff would wake
me up and kick me out as they usually do on busier days. Instead, they just let me sleep,
something I’ve gotten very adept at during the daytime hours, now.
It wasn’t until after 2:30, that I was finally released.
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Kara, the nurse practitioner/pill Nazi came into my “room” and told me that everything
looked really good. I was a little low on potassium, so she told me to eat more bananas.
So, when my mom and I went to Au bon Pain — a way over-priced restaurant
conveniently placed on the second floor of the hospital, I was sure to get some banana
bread for lunch.
Anyway, long-story longer . . . My mom and I had to wait for several hours before Sue
could get to the hospital. Traffic was horrific. It was literally as cold as a refrigerator in
the hospital lobbies.
I toured around the place a bit and wandered into the little bookstore. I was wanting to
find Ann Coulter’s new book that’s out called “Guilty” but only was able to find liberal
books such as piles and piles of unsold copies of Barack Obama’s “Audacity of Hope”
(both in English AND SPANISH, by the way), lying around. (Just so I don’t get accused of
being biased, I DO own this book as well.)
Eventually, Sue showed up. I hobbled out of the lobby with my cane and into the SUV . . .
and . . . fell asleep again. We finally made it home at around 9:00pm.
What was the point of any of this? Well, I guess it shows that my health is definitely
improving. The complications are becoming less and less. And, I’m starting to see more
of a “normal” life coming my way.
I’m still really, really worried, I guess, about being able to get a job again. It’s been so
long that I’ve been out of work. It’s going to be tough to demonstrate how I’m still
relevant during an interview.
January 17, 2009
So, I just got off the scale, and, for the first time in months, I topped 120lbs. And, I’m
sure it’s not just water or fat!
I’ve been trying to get some more exercise lately, which has been building up my
muscles. I think my legs are actually starting to resemble “legs” again!
I branched out and had my aunt take me over to the mall today so I could walk on my
own. I thought I could walk more than just once around (including one flight of stairs),
but, alas, it just wasn’t in the stars!
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As a big believer in libertarian free-will, my last statement goes against those beliefs.
However, I do feel like I’ve been fighting against fate, as if it is seeking revenge on me,
and I’ve declared war against it. I’ve been “thrown” so many curves and hit by several
locomotives one right after another:
My wife’s sudden abandonment should have left me shocked and depressed,
but with God’s help, I prevailed.
The custody battle should have left me without hope, and no reason to live, but
with God’s help, I prevailed.
The divorce should have left me humiliated and demoralized, but with God’s
help, I prevailed.
My job loss should have left me destitute and desperate, but with God’s help, I
prevailed.
My sudden onset of cardiomyopathy and need for a transplant should have left
me dead . . .
But, here I still am. My spirit, my faith, and my sense of humor are all still intact. Yes,
there is damage, but I am now more confident than ever, that with God’s help, I WILL
prevail!!
God bless all of you!
Love, Steve
January 20, 2009
Physically, I have been feeling much, much better! I would say that the one thing that
has helped me maintain my sanity has been chatting with so many of my old, new, and
new again friends! Since anything resembling a social life has been so transient, these
chat sessions have reminded me that even though my story sounds like a bad novella
being used as a sorry excuse for some hidden crime I’ve committed, I’m still among the
human race and that there are people out there who genuinely value me and my
friendship and are actually honored to know me. — (This stands in sharp contrast to my
former wife who not only requested to have her last name changed, but also that of our
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son because the name “Berg” was too much of an embarrassment! — It took me a
LOOOONG time to make sense of that brutality!)
My health issues have left me indefinitely dependent on disability insurance and
Medicaid. For the final divorce decree, the judge relied upon the income I was earning
from my former job. Hence, my child support contribution was calculated to be $1500
(for a 2 year old baby!) per month. Soon after the decree, my contract was suddenly cut
short and I found myself unemployed. It’s therefore no secret that my next step is going
to be the submission of a new motion to Judge Quam to have my child support obligation
reduced. I know that may sound cruel, but I simply cannot afford it and, as they say, you
can’t squeeze blood out of a turnip. I was working quite extensively this weekend on
preparing my affidavit and am hoping to get it filed either today or tomorrow! Please
pray that I’m able to do so and to find all the supporting documents I need!
When I woke up this morning, I was a little scared. My aunt, Jan, seems to be coming
down with a cold. Since I’ve been suppressing a perfectly good immune system, I’m
much more vulnerable to illnesses. This basically could mean that if she’s just got a
sniffle and an occassional cough, could mean that I’ll have full-blown double pneumonia
by the end of next week! — I’m actually exaggerating both the danger and my paranoia,
but it was disconcerting enough for me to give Kara (my nurse practitioner at
Northwestern) a call to ask about it. Luckily, she indicated that I shoudn’t be too
concerned, that I shouldn’t worry too much, but to be sensible.
After running some errands this afternoon, i took a bit of a nap and then went out to the
mall with a friend to grab some cheap dinner and to walk the halls for some exercise.
That was one of the highlights of my day.
January 21, 2009
For the first time in quite a few days, I think I’ve actually been able to get a decent
night’s sleep! My natural tendency, if left to my own devices, is to turn into a night owl.
For some reason, my mind really likes to kick into high gear say at around 2:00 in the
morning. That’s usually when I tell myself, “Crap, I think I can make it another hour!” But
then, when 3:00 happens, I’m usually right in the middle of doing whatever it was I was
doing (whether it’s writing my blog, reading a book, setting up my network of computers,
etc.) that I just keep going. At around 4:00, when I’m really starting to feel the wooziness
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settling in, I find myself toying with the idea, “Well, it’s not going to be worth it now. I
might as well just stay up and watch the sun come up.” — I guess my thinking is, I might
as well use my insomnia to my advantage instead of it becoming a source for wasting
time. In other words, if I just keep lying here in bed agonizinig over how to get my mind
to shut off and then how to get to sleep . . . and do THAT until 6:30am when I finally DO
fall asleep and not wake up until 2:00pm, I will have wasted all that time anyway. On the
other hand, if I give in to the insomnia, resign myself to it, and yet still refuse to waste
any time, I could take advantage of it by getting the things done now, that I normally
would have done in the morning. Even though that is my preference, when it gets to be
that late at night, it becomes more of a luxury that I can’t hope to afford.
But, lastnight was different, thank God! I think, in large part, the fact that I’d only had a
few hours sleep within the previous 48 hour span, as well as the fact that I normally
indulge myself in some kind of bowl-ful or plate-ful of carbs at around midnight has been
another culprit. (The steroids I’m on for anti-rejection), cause a hungerness for
carbohydrates, which, if eaten just before bed, are not being given an opportunity to be
metabolized so they are just turned into fat and become absorbed by the body as fat
tissue.)
As far as my physicl health is concerned, I’ve definitely been doing a whole lot better.
Yesterday, my dad came over here to pick me up and take me over to St. Anthony’s in
order to get some lab work done. The results are faxed over to Northwestern for Kara
and her crew to review (that’s how I got in trouble the last time!) I haven’t been feeling
nauseous hardly at all and I’m going to be starting my cardia rehab very shortly as well.
My strength is slowly coming back! Like I said the other day, when I first hopped on the
scale this morning it’s been at or above 120lbs!.
January 22, 2009
The past couple days have been really positive. I’m gradually becoming more and more
independent. Since my vital signs have, for the most part, leveled off, I have stopped
taking them every day. The one thing I have been watching pretty regularly, though, is
my weight.
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Yesterday, I called the local hospital here in Rockford to find out about getting into a
cardiac rehab program. I’m feeling so much pent up energy and just want to run and
work my musceles again.
Soon, I am going to start looking for some kind of employment. I know I’ll need to dust
off my resume and make sure it seems like I’m still relevant and employable. It would
definintely be nice to have a job lined up in Minneapolis so that when I move back, it will
be as seamless as possible. I’m hoping to be able to move back by May or June. But,
there are still several things that need to be taken care of, first, such as getting a driver’s
license, some sort of intermediate income, and fuller restoration of my health.
With the help of my sister, I have been able to get a new cell phone. Even though I had
been with T-Mobile for over 9 years! they sure weren’t shy about cancelling my account!
Sue is having to pay for the phone on her own, out of her own pocket, until we can find
some other sources of income.
That’s about it for today, I guess. I suppose no news is good news!
January 23, 2009
Today, the inevitable happened. . . .I just hope I’ll survive.
I caught the cold that’s been going around the house, here. I didn’t sleep too well
lastnight, and then woke up fairly early. Even though I’ve got all three of my computers
up and running now, I think I’ve been doing a pretty good job at dispelling the notion that
I’ve become a permanent resident of geeks-ville since, I can’t seem to figure out how to
make a network out of them — although I’ve been tryng!
So, I was still really tired this morning, and, when I got up to down my drugs, I felt that
ominous, dry, scratchy feeling in my throat. “Oh no!” I thought! “I don’t need this!” — I
thought I was going to be able to avoid it all together. Fat chance.
So, I got nervous because while a “cold” means one thing to most people, it could mean,
“double-pneumonia” to me! On top of that, my stomach has been nauseous all day as
well, which is REALLY frustrating because it prevents me from getting anything done. —
So, I slept. And, I watched TV. And, I slept. And I took a long shower. And I . . .
My parents stopped by . . . while I was sleeping. Also, the outpatient nurse practitioner
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had called. I attempted several times to call her back to find out what she wanted.
Evidently, my TAC (i.e. Prograf) levels were too HIGH this time! (A couple weeks ago,
they were too low!) So, she told me to take less of those meds. When I told her that I
thought I was coming down with a cold, she didn’t react with the urgent alarm that I
expected her too. Instead, her response was more predictable, except the part where
she told couldn’t take any over-the-counter medicines! She said that if a cough or runny
noise develops, that I should give the hospital a call.
I’m sure everything is going to be just fine, though. Despite it all, I know things could
have been much, much worse. And, I’m definitely going to try and keep a more positive
attitude.
I’ve been meeting a whole lot of new and old people online since I’ve been sick. This
online social networking thing has been really quite amazing! What I have found even
more interesting is the fact that most people have problems, BIG problems in their lives,
enough to make them miserable. Sure, their circumstances may not be nearly as
difficult as your own or someone else’s, but enough such that you would never expect
anything to be different. You’d think they had the happiest life imaginable. In reality,
when you can get people to open up, you find out that they’ve either HAD or are having
some really trying times in their own lives. On the one hand, it diminishes the degree of
arrogance I might be tempted to feel because my particular situation seems more
extreme than what most people go through, (which may or may not be the case), but on
the other, I feel like I am able to provide a perspective that most others are not able to
relate to. It might sound totally weird, but if these life experiences of mine can be used
as real-life object lessons for others than I am content (not bitter), that God though me
worthy enough to become such a valuable resource: to the person who has a bad
drinking problem, to someone getting divorced, to someone facing bankruptcy, to a
father facing the loss of custody of his child, to a person struggling with long-term illness,
surgery, or the need for transplant. Although my faith has really, really waivered lately, I
still feel honored that God chose me for this purpose!
January 25, 2009
I’ve still been waking up with a sore throat. The reason I’ve been so concerned about
getting sick, even just a little, is because of the immune-suppressants I’ve been taking
every day. In fact, just a couple days ago, my outpatient nurse practitioner contacted
me and told me that my Prograf levels were too high! Prograf or Tacrolimus is one of the
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anti-rejection drugs that reduces the chances of my new heart being attacked by my
body’s immune system. Whenever a foreign body is introduced into the human body,
the white blood cells don’t show up as the welcome wagon committee with a plate of
cookies, but are more like the sentinels from the movie “The Matrix.” That foreign body,
is recognized as an invader, even though without it, the entire body would fail.
Another thing that’s kind of a nuisance is that I’m not allowed to take any over the
counter meds, not even aspirin since it might interfere with the prescription drugs. I told
the hospital that I felt I was coming down with something and she said that I needed to
call them if I started feeling worse or developed a cough or runny nose. Luckily, I have
been running a fever. There’s still so much that I don’t know about, so I’ve been
considering getting involved in some type of support group where I can ask questions
like this, if anything, there must be some online forums.
So, I’ve been laying low, doing a lot of writing and thinking about my future, putting
jigsaw puzzles together, organizing all my paperwork, etc. I’ve actually come up with a
good idea. I’ve got a scanner that I’m able to scan all this stuff into, instead of having it
scattered all over the place. Given my recent gypsy nature, having all of these legal and
medical papers and files in hard-copy files has really prevented me from being as
efficient as I could. So, I’m going to scan all these files and save them on disks. Anytime
I need anything, I’ll just be able to send them electronically, or print them out. The main
problem is, though, there are just SOOO many. So, I’ve definitely got my work cut out
for me!
By the way, everyone keeps asking me about who “Ross and Reed” are because on my
Facebook profile, I’ve got a couple photo albums with their pictures. They are my cousin
Connie’s little twins (not identical), which I posted for her.
Finally, for those of you in the Minneapolis area, next Saturday the 31st, from 10am – 12pm,
Evergreen Community Church is holding a charity benefit for me to help offset my medical and
other expenses. For more information on it, please feel free to visit my Facebook site (just
search for Steven William Berg and feel free to request me as a friend!)
Thanks and God bless,
– Steve
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January 27, 2009
I’m definitely not sick or getting sick anymore, like I thought I was! Thank God for that!
It’s been pretty exciting seeing my health and strength coming back again! I’ve definitely
got a lot more energy than I used to have. I’m not sure if I mentioned it here or not, but
yesterday I got my “cooking” bug back again. Instead of feeling too sick to my stomach
to even think about going to the extreme hassle of buttering my own toast, I was eager
to make something out of the bananas we had on the counter that were beginning to
enter their twilight days. So, to put them out of their misery, I liquefied them in the new
blender (about 2 bananas = 1 cup, by the way). It took quite a bit of time. My aunt, Jan,
had said she didn’t care for chocolate chips in the bread, so I had to leave that part of
the recipe out. Also, I made some terryaki chicken, and improvised a little by making two
separate batches, one spicy and one not so spicy!
Today, I had to run some errands and asked a friend that I have here in Rockford if he
could take me. It’s definitely been a great experience re-connecting with people I knew
in high school, the churches I used to attend here, and friends of other friends who are
all on Facebook. I do like the concept of Facebook, but it’s still not intuitive at all! It’s so
hard to find things and to even know what you can do! Plus, I don’t think the “Search”
feature actually gets everyone that you might be looking for, especially for people with
very common names!
I was set to go back to Northwestern for another biopsy tomorrow. I had even
rescheduled other appointments around it. But, for some reason, it never actually got
rescheduled, and so, I’m back to having to go this Thursday instead of tomorrow
(Tuesday). The hospital called again today to confirm Thursday’s appointment. The
woman at the other end of the line said she hadn’t met me yet. And, I’m wondering,
“How could she possibly know if she had ever met me in this or any other lifetime???”
She went on and on about how they were going to be making two “puncture” wounds in
me this time and that, because of it, my “bedrest” time was going to be extended to 6 –
8 hours! instead of the normal 2! Apparently, they have to do an additional test of my
arteries, something that only has to be done once a year. I suppose I’ll learn more about
that on Thursday.
One of the appointments I had rescheduled was my appointment with the local cardiac
rehab center at OSF (Order of St. Francis — It’s the name of the Catholic organization that
owns and operates St. Anthony’s hospital here). I am now confimed to go in on
Wednesday, instead of Thursday. As I’ve said before, I am going to be really excited to
begin getting back into physical shape again!
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It was kind of fun driving around town today. This is the city I grew up in and since I had
not lived here since 1987, I was looking at the city through different eyes. The part of
town (the far east side) where my family lives, is fairly upscale. However, as you drive
further west, you definitely notice a difference in the condition of the buildings and
where money is or is not being spent! We went by the original house I lived in first as a
kid on Arnold Avenue. My parents moved in there when the house was brand new and
when the other side of the street wasn’t even built up, yet, (like 1970 or 71, I think).
Again, everything looked so much older and all of the trees looked so mature. Except for
two, I had personally planted all of the dozen or so of maple trees that are growing in the
yard! As a kid, I would find these little seedlings of silver maples growing scattered
around the yard and my heart went out to them! I couldn’t bear the thought of them
being mowed over mindlessly by my dad the next time it came around. So, I set up my
own maple tree rescue, a small area in the back yard right behind the garage. When the
trees had grown large enough to transplant, my dad and I put them all over the yard. I
still look at that old house and grin with pride every time I see the little forest that I
created which is now overshadowing the house!
January 28, 2009
I started cardiac rehab today. I’ll be going there 3 times a week for the next 12 weeks!
I’m pretty excited about it!
Also, tomorrow, I have to go back to Northwestern for another scheduled biopsy. I’m
going to be there the whole day because they have to do two separate procedures; one
is the normal biopsy of the heart, and then another one is a scrape of my arteries which
they only have to do once a year.
This means I’ll be waking up really earlier and I need to start fasting 🙁
January 29, 2009
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I stopped eating lastnight at 10:30pm. A nice bowl of Cinnamon Toast Crunch began my
fast. I’m not supposed to have anything to eat the night before I have to go in for these
biopsies. They wanted me in there today at 7:00am.
My aunt knocked on my bedroom door at about 4:40am. We left at about exactly 5:00am
for downtown Chicago. Luckily, there’s hardly any issues with traffic that early in the
morning. I brought several things to keep me occuppied. But, as it turns out, I was so
much more interested in catching up on sleep than anything else.
Since I was having more than one simple procedure done, I was put into more of a
regular room rather than a “parking spot” surrounded by curtains.
It seems like I didn’t have to wait for hardly anything all day. Of course, a lot of that may
have had to do with the fact that I unconscious for 90% of the time I was there. When I
arrived, I knew exactly what to do. Get undressed, put on the lovely hospital robe that is
open in the back, lie in the bed, and just wait.
I showed up unshaved, unshowered, and unshampooed. So, I already felt a little gross.
I didn’t see a TV in the room, but was then later surprised when my nurse pulled a little
one around from the back of the bed.
I made an attempt to get some work done by opening up my laptop, but the nurses were
all right on top of me, inserting pins, electrodes, and IV’s. Not even before they were
done, Michael the tongue-chewer showed up to do an echo-cardiogram.
That seemed to go a lot quicker than I thought. Because I was so tired, I wasn’t in much
of a mood to talk much. All I wanted to do was get as much sleep as I could.
The catheter people showed up back in my room at about 8:45 or so. I asked them if I
was the first one for the day.
(TO BE CONTINUED . . .)
January 30, 2009
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(Continued from yesterday)
It turns out I was the first one for the day. I kept getting told how good I looked since the
last time they saw me. (In fact, the nurse I met with for my physical therapy appointment
told me I looked like Ryan Seacrest! — I suppose that’s a good thing!)
I hardly remember the procedure at all because, as usual, I fell totally asleep. The next
thing I knew, I was back in the little holding room, being periodically woken up for this or
that. Because of the multiple puncture wounds I received, they had to have lying flat on
bedrest for 6 hours! I wasn’t even allowed to raise my head! That was good enough for
me, since all I did was sleep. I felt bad for Dharti, the nurse practitioner on my case. She
showed up in my room to ask me a bunch of questions and all I did was fall asleep on
her!
I was locked up in there until 6pm. I had to walk around to make sure there wouldn’t be
any bleeding. Once that was over, a doctor came in to examine the wound and then I
was free to go. It was perfect timing too, because my dad was outside waiting for me to
take me home.
When I got in the car, I told him “Happy Birthday” He’s 64 years old today.
February 1, 2009
I’ve heard from some very reliable sources that the benefit held yesterday for me in
Minnesota was a great success! I don’t know who all showed up yet, but I’ll be sure to
get the list to thank all of you specifically!
I apologize that I was not able to attend. Although I should be able to travel longer
distances very soon, it’s going to take a little bit more time.
Thanks and God bless all of you!
– Steve
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February 2, 2009
SPECIAL ANNOUNCEMENT
.
This past Saturday, January 31, 2009 a benefit was held on behalf of the charity for my
brother, Steve. The event was sponsored by Evergreen Community Church in
Minneapolis and was a big success!
An anonymous donor has come forward offering to match any donations
received up to $1000.00 before FEBRUARY 8, 2009!
So if you would like to make a tax-free donation to help defray Steve’s medical and
personal expenses related to his transplant surgery, you can either send a check to the
address below, or click the following link to make an electronic donation.
Thanks and God bless,
Sue
.
Please send donations to:
A Heart for Steve
c/o Suzanna Bautz
11822 Cardinal Lane
Calendonia, IL 61011
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http://www.facebook.com/home.php#/pages/Steven-Berg/48249304416?ref=nf
February 4, 2009
First of all, I’ll have you people know that I had already finished typing today’s entry and
then when I hit “Submit” I got the Internet Explorer, white screen of “OMG! I’m going to
tear my hair out!” – That’s the lesson I get for not writing it all in MS Word first and then
cutting and pasting it into Caring Bridge.
So, anyway, I started cardiac rehab last week. It’s through St. Anthony’s Hospital. I’ve
been eager for a while to get that started. I’ve been getting quite a bit of exercise on my
own, but at the rehab center, they monitor my heart rate and take my blood pressure
while I’m on the treadmill and the stationary bike. This prevents me from working out
too hard. I go there three times a week.
The ladies that work there are definitely really nice to me. One of them even told me
that I look like Ryan Seacrest! (Well, except for the glasses, I guess.) I suppose I
shouldn’t be surprised with her reaction every time I walk in, since the rest of the
patrons there are all 30 years my senior and bald!
So far, these sessions have been relatively short, none lasting more than an
hour. They’re also very easy. I hardly ever have to exert any energy, never breaking a
sweat or opening my mouth just to breathe.
In any event, it’s definitely very cool to compare how I’m feeling now compared with how
I was feeling back in August! It’s totally night and day. I remember being utterly
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amazed at how people could just so easily walk from one spot to another, or even stand
up from a sitting position!
My aunt and I saw the movie “Slumdog Millionaire” It was definitely a good, well-done
movie, but I could definitely catch the underlying theme of fatalism prevalent in it –
something very consistent with Hinduism. (Without giving the movie away, be sure to
make the connection between what Jamal sees written on the bathroom mirror and the
Millionaire host’s comment to just do the “right” thing, and you’ll not be surprised with
the ending!)
February 6, 2009
It has been a tough day today. I woke up and had to get ready for rehab appointment at
10:45. The good thing is, I was in and out of there pretty fast because my heart rate and
blood pressure were looking pretty good. (If my pulse is too high, then they will make
me sit down and wait for it to drop.)
I had been having a hard time thinking about Austin and how much I missed him. I’m
sooooo appalled at how the roles of fathers are so minimized. I know everyone is sick
and tired of hearing me rant and rave about this, but, I just can’t get over it and I won’t
be satisfied until Austin is able to spend just as much time with me as with his other
parent. If I have to fight the system in order to do it, then I will. I’ve been thinking more
and more about joining or even starting a Father’s Rights group in Minnesota.
I spent most of the afternoon sleeping. My gut has just been rumbling and I’m getting
tired of the side effects that these drugs are causing me. But, I can’t complain,
obviously! I suppose I can deal with a little bit of nausea rather than death!
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By the way, I want to thank those of you who have been contributing to my medical
fund! If anyone would still like to make a contribution, please remember that if you do
so before February 8th, your donation will be doubled! You can either send a check to
my sister’s address listed over to the right, or, you can click the link above next to my
picture to send money electronically.
February 9, 2009
It seems as though, since I’ve gotten sick, my entire social life has been syphoned off
into cyberspace. It’s bizarre, really! I mean, why bother calling anyone or going
anywhere when you’ve got chat rooms galore to choose from? I must admit, I didn’t
much first understand the draw to MySpace (and, I’m proud to say), I’ve never ONCE
created a MySpace page!! (Thank you, Thank you!) — That’s probably almost as
unbelievable as to say that I’ve never EVER smoked a cigarette — never even took a puff
(yes, it’s true!)
I spent most of my weekend working on a bunch paperwork and personal financial stuff.
But, I’m sooo easily finding myself getting distracted by yearnings to play Sudoku or to
watch as many House and Frazier re-runs back-to-back!
I’m not sure why, but my sleep schedule is still off, and I can’t seem to get it to shift back
to a more normal routine. No matter WHAT time I actually go to bed, my mind refuses to
shut off before 2 or even sometimes 3 in the morning. It’s actually rare that I’m awake
before 10:00 every morning. On nights that I have insomnia, I just give up and tell myself
that I’ll just take a couple naps later in the day.
Tomorrow, I have to make sure I’m up by 10:00 because I switched my rehab times to
10:45 on Mondays, Wednesday’s, and Friday’s. They gave me a pedometer that I’ve
been supposed to be keeping track of the number of steps I take every day (oops!). Well,
today, I walked 2203 steps. That’s obviously not a whole lot in a 13 hour period.
As far as my physical condition is concerned, I can honestly say that I feel I am at, or at
least am on the verge of, being in a more “normal” state. In other words, I don’t feel like
I’m “sick” anymore and really need special attention. I DO still feel somewhat “out of
shape” in the sense that I should be going to the gym to burn off calories instead of
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putting them on as well as gaining more muscle mass. I can feel the new heart in me,
with my rejuvenated body, just kicking and wanting to run marathons or something! I
really have a good feeling about things and can’t believe how far I’ve been able to come
in just a few month’s time! In a few days, it will be the 3-month anniversary for my new
lease on life!
Ironically, I do have a lot of nay-sayers out there who, although might have the best
intentions, have been telling me things like I’ll never be able to go back to work again, or
move back to Minnesota, etc. I certainly have EVERY intention of restoring what I lost
and even going beyond! This may or may not come in the form of better circumstances,
but actually in playing more of a vital role in making a difference in other’s lives. To me,
that is actually the definition of success! When I die, I’d rather have a wreath of the
people whose lives I’ve touched surrounding my grave rather than a million dead flowers
making phony tribute to my money, power, or fame. One is eternal, one is fleeting.
It’s still a HUGE uphill battle. There’s still a lot to overcome. But, with the grace of a good
and caring God, this little engine that COULD, is well on its way to being the little engine
that WILL, and, will eventually become, the little engine that DID!
February 11, 2009
I just recently came back from my cardiac rehab session. I was told that I’m doing very
well and that my heart rate has been getting better. — I do know that I could probably be
doing even better, though. Other than going to the grocery store, I didn’t really do a
whole of walking or getting exercise.
I’ve been getting a lot of sleep. I’m not sure if it’s good or bad, though! I’m just always
tired, for some reason. My guess is that I’m eating too much sugar and carbohydrates.
The main thing I have to get down today is to sign and send a Valentine’s Day card for
my son, Austin. It’s a cool, cloudy, rainy day today, so, maybe I’ll have some tea and get
some reading done.
(I’m sure all of this sounds absolutely exhilirating!)
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February 12, 2009
I’ve discovered another horrifying side effect of my medicines (specifically, Prednisone) —
it’s called “ACNE” — I’m a 40-year-old with the skin of a 14-year-old. The jury is still out
how long I’ll have to be taking the stuff — I’ve heard everything from one year to the rest
of my life.
Yesterday, I joined a couple online support groups for heart transplant patients. Nausea
seems to be a common problem among everyone. They also had some good ideas. I
guess what I’ve been experiencing (i.e. all day long GI pain), is the same as what
pregnant women have in their first trimester. Needless to say, I was relieved to find out
that I wasn’t pregnant — at least, I hope not.
Earlier this afternoon, I went across the street over to the neighbor’s house, Sara and
Duwayne (it was Sara who instigated this whole Caringbridge thing for me in the first
place). I went over there to offer to walk their dog, Blu. Since the weather has been
getting a little bit warmer (thank GOD!! I even heard motorcycles), I can start getting
some exercise outside. I walked over a lilttle over a mile and even climbed up a little hill.
I didn’t get winded at all, but I certainly could feel it.
February 14, 2009
I think it’s pretty ironic, there isn’t as much to write about now that I’m out of the
hospital as it was when I WAS in.
Today was Valentine’s Day. Believe it or not, before 2003, I don’t think I had ever really
celebrated the holiday before by taking out a date. But, six years ago today, I did do just
that and give this girl her “best Valentine’s Day ever.” — I had the event all planned out.
We had been dating for a few months and I had saved this day to let her know that I
loved her. I had purchased a bunch of red balloons, rented a helium tank, and took
several days filling them up. I had also bought other decorations, as well as a big card
and teddy bear. — I conspired with some friends and her family to have her house
secretly decorated while I treated her out for dinner and a play at the Chanhassen
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Dinner Theater. She loved it. When she walked into the door, she was surprisingly met
with all the streamers, the card which finally told her that I loved her, and a bottle of
wine that we shared by her fireplace.
Forward six years later, I woke up at around noon to an empty house. I again, had a
difficult night the night before due to insomnia, another exciting side effect of
prednisone. I hadn’t taken my morning pills yet, so I hurriedly got up and swallowed a
bunch of ’em. (Well, it wasn’t as indiscriminate as I’m making that sound. — I had spent
almost 2 hours on Friday night filling the boxes.)
I decided to make breakfast, which consisted of two soft-boiled eggs, a piece jelly toast
(“with butter for calories”), and some cottage cheese (–call me a weirdo, but I love that
stuff!). My parents dropped by. My dad wasn’t too keen on the movie we were watching,
“Monster-in-Law” with “that communist, Jane Fonda!”
What else did I do? Took a shower, took a power nap, worked on my jigsaw puzzle,
worked on a website, watched the movie “W.” (which, by the way, for an Oliver Stone
movie, wasn’t as tainted by liberal hate-mongering as I thought it would be!), played
around with downloading free movies and videos from the internet.
I was going to go out with a friend to see some movie called, “Push,” but, he was too
tired (and, frankly, so was I).
As far as the answer to the interminable question, “How are you feeling?” is concerned, I
would say today was a mix of both good, bad, and ok.
February 16, 2009
I only took 3005 steps today. At least that’s what this pedometer thingy I got from the
rehab center said. I’m definitely finding that difficult to believe since I went with my aunt
today over to Target (I needed to pick up some office supplies. I have this nifty, cool
Kodak All-in-One thing, but it won’t let you do ANYTHING unless BOTH black and white
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and color cartridges are loaded and have enough ink in them — even if all you want to do
is fax or scan something!). So, not only that, but, after getting sufficiently frustrated with
fixing jammed paper for a couple hours, I decided I needed a walk before it got too dark
out. So, I even went for a mile long walk. The reason I’m holding the accuracy of this
thing suspect is because the “Reset” button is SOOOO easy to press, I’m sure that it
must accidentally happen at some point while I’m sitting down.
I always make these grandiose efforts to complete magnificent tasks during the day, and
wind up either getting distracted with something more interesting, (like sleep or a
hilarious episode of Frazier), or becoming fixated on correcting some problem when
there are equally efficient work-arounds available.
I’ve also become a total Facebook addict, I must say. I am just CONSTANTLY online! (I
guess with four computers, it’s not all that difficult to have one handy!)
There are a variety of factors affecting my sleep. I know some of my drugs cause
insomnia (it’s 2:34 in the morning right now, for instance, and I’m still wide awake), plus,
all the caffeine I’ve been drinking, as welll as my diet. As far as the caffeine is concerned,
yes, it’s true that I do often drink a few cups (no, not GALLONS), of coffee in the morning,
and then also a few cans of pop, however, there are definitely days where I won’t have
any of it at all! —
Eons ago, I was diagnosed with hypoglycemia, (i.e. low blood sugar), which basically
means that if my insulin is too high, I feel very, very tired and could even pass out. In the
past, these overwhelming feelings of drowsiness have been caused by my poor eating
habits, particularly, eating too much sugar and other carbohydrates! I had once almost
totally lost my sweet tooth, and would only eat very, very small portions of bread, rice,
or pasta. The only problem there, though, is that I would end eating out a lot (like
Chipotle, or Thai or Asian food — very, very spicy!!), which, of course, would get very
expensive. If I cooked at home (which I certainly love to do), it would just take forever to
do.
Who cares about any of this anyway? I have no clue, other than me. At some point, I
guess, I should move this “blog” over somewhere else, since I’m becoming healthier and
healthier. Plus, since this site is SOOOO public, I definitely have to filter a lot of things I
would like to be able to journal for myself as well.
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February 18, 2009
It was a perfect chilly and overcast day. It fit my mood almost perfectly. The sobering
sense and realization of our ultimate isolation in this world was mesmerizing. As I was
walking down the barren street, it suddenly hit me that NO ONE knew exactly where I
was, what I was doing, and better yet, what my current heart rate was or how much I
urinated so far today. It was a strange and wonderful feeling of freedom and autonomy.
Granted, it was short-lived, but certainly was nice.
Since I’ve essentially become a disable and dependent adult, I’ve had to exchange a lot
of my freedom and privacy for the sake of my health and release from stress.
Surrendering yourself into the care of others is both liberating and enslaving in that way.
Sure, I didn’t have to concern myself with how my bills were going to get paid or making
sure I would be ready for the next job interview, but, it did mean that I also gave up
several freedoms that I used to enjoy such as wanting to get up from my hospital bed to
take a walk or even go to the bathroom; and since I’ve been out of the hospital, not
having ANY income or mode of transportation has really tied me down, too. My aunt and
uncle and sister have been particularly amazing and have gone way too far in
accommodating me, but I still can’t just get up and go somewhere when I want to or
when I need something.
Today, it seems remarkable to me to watch people not even think twice about running
over to the grocery store to pick some more milk or a frozen pizza. But, I guess it’s better
than how I felt before the transplant when I would sit totally transfixed staring out the
window at a bunch of kids running around a soccer field, or even my roommates just
getting up off the couch to just answer the phone. (That was back last summer, when the
thought of having to get up and go to the bathroom evoked fits of worry and distress
because I knew that pain would be imminent.) — Gosh, now that I’m recalling those days
of torture, there’s simply no way I can complain about anything now!!
However, now that my life is starting to slowly come back together again, I’m finding
that I’m missing Austin more and more. I would have thought that as time rolls on, his
absence would get easier and easier. But, it is not. He is growing up, like so many kids
do, without his father. I was just watching an old rerun of that show, “The Golden Girls”
where a grown man who never knew his father, is traumatized by the total absence. It is
so true that there is a strong bias favoring the roles of mothers over those of fathers. I’m
almost sure that I’m being called a “deadbeat dad” because I haven’t been able to
finanically support myself much less my son; but, the reality is, I KNOW the truth, which
is that I do love my kid and I always, always will, and would do anything for him. He will
never have another replacement for me and I will never move away from him
permanently. The problem is, I don’t know what to do. The Family IN-justice Center in
Minneapolis made up their minds and decided that Austin would be better off with
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minimal involvement with me. I simply cannot and will not be ok with that. Sure, I can
continue to go to court as much as I want, but I want to do more. I want to see this
totally lopsided system become more balanced, somehow. I’m sure there are plenty of
other “Throwaway Dads” out there who WANT to be their kids’ dads but are being denied
the privilege and the responsibility. Just throwing money at the mother who is able to
indiscriminately use my money at her own discretion and without any accountability is
certainly no replacement for that duty I owe my child. I want to raise him, as, I’m sure
several other guys want to do as well.
Divorce is wrong and where there are kids involved, it is evil. If I can’t fight in the
corrupted courts for Austin’s rights to have a loving father in his life, then I have no
choice but to fight in the courts of public opinion.
February 21, 2009
The past couple days have been a little rough. My stomach has been upset and I’ve just
felt lousy. All I want to do is sleep — which is what I’ve done a lot of! I’ve been getting
good sleep at night, but I’ve also been sleeping a lot during the day as well.
One of the pills I’ve been loading up in my boxes is Pepcid. They originally had me on
two per day, then knocked it down to just one per day. Since I’ve been suffering most
days without the second dosage, I went back to it. Next week, I have to go back for my
monthly biopsy anyway.
When I got up this morning, I opened the door to Swedish pancakes wafting through the
air and my dad’s loud voice. My parents were over — and, I’m still not sure what for.
Anyway, they dropped me off at my rehab place. For some reason, my heart rate
wouldn’t go down far enough at the end of it in order to let me go. So, I had to sit and
wait a little bit longer. — It’s been weird, my pulse and blood pressure have been higher
than it was while I was in the hospital, and then for the first several weeks while I was
here at home.
Supposedly, we’re going to be getting a ton of snow here overnight, but, nothing yet.
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February 22, 2009
My cousin, Brittany, has been in town (sorta) for the week from Columbus, OH. She
works at a Macy’s out there as a manager of something or other. She had some
vacation time so she came out this way to visit family and friends. So, now there’s a big
air mattress taking up most of the living room.
My aunt and uncle’s place is moderately sized, but not equipped to handle a swarm of
guests all at once. However, this house seems to attract all sorts of sundry characters
wondering in and out, some of them needing a place to stay overnight (I guess that
includes me – the longest staying gypsy who’s been squatting here for so long, he even
gets his own room!) So, needless to say, there’s a running joke that I made up when my
other cousin, Connie, came over with her boys needing a place to stay overnight. We’ve
been calling the house the “Moch motel” [INSERT HYSTERICAL LAUGHTER HERE] Again,
“Moch” (which happens to rhyme with “roach”) is the stupid nickname my dad gave his
sister once when they were kids, which has just happened to stick. Actually, it’s only
“stuck” with the Berg’s. Her real name, which those of you in the sane part of the world
call her, is “Jan” or “Janet” — Dang, I remember as a little kid facing the trauma of not
knowing what to call her. I was nerve-racked about it, even. On the one hand, I didn’t
want to sound stupid by calling her by a really, really dumb name, but, on the other
hand, it would have felt weird to call her “Jan.” So, I just defaulted to whatever my mom
called her by, which, of course, is Moch. My younger sister dutifully followed suit.
In any event, we went out for breakfast in a semi-blustery blizzard (remember I said we
were supposed to get a lot of snow?), in downtown Cherry Valley. Technically, I guess, it
was more like brunch because it was already after noon. I haven’t been able to get up
before 10:00 am for some reason. Last night, I didn’t fall asleep even until 6 in the
morning. Anyway, I’ve still been feeling lousy so, the last thing I wanted to shove down
my throat was a huge, heavy plateful of Swedish pancakes, as scrumptious as they are!
So, I just loaded up on their coffee and had a couple eggs and ham, while I watched
Moch trying to convince Brittany how idiotic it was for her to want to drive all the way up
to Madison (about 70 miles from here), while we’re having white-out
conditions. (Somehow, for reasons that were never explained to me or that I simply
forgot, Brittany became acquainted with several people from the University there,
although she never attended the school herself).
As I feared, the food hung heavy in my gut. We drove over to Wal-Mart, which is actually
one of those SUPER Wal-Marts, which basically means, except for getting scuba diving
lessons or buying a studio condo, you can pretty much get all of your errands and
activities done in one place! — As grouchy as my stomach was, I was glad to be walking
around the big store, in order to get my food digesting, and my body moving.
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Before going to Walgreen’s to pick my usual partial order of refills, we found out that
there was a party going on at my parents’ place. Well, not really, but Sue and her kids
were there. Since Sue hadn’t had a chance to see Brittany, we decided to stop in for a
visit.
I spent most of the rest of the day either in the bathroom, in bed, or Facebooking. I did
get a little bit of work done on my resume, though!
February 24, 2009
Today started out good, even though I seriously didn’t get any sleep!
I’m not sure what set off the upset stomach this time — the fact that it comes and goes
steers me away from calling the hospital to find out what’s going on and what I should do
about it. — I’m supposing the only fear I have is that the answer will be to come back in
so they can admit me and spend the next three days playing CYA, while I’m stuck in the
bed with no progress being made.
So, instead of just wasting time by TRYING to get to sleep, I thought I’d be productive, so,
at 3:00am I turned on the light and Facebooked . . . . no just kidding. I actually started
writing a letter that I had been thinking of putting together.
After rehab, my father came to pick me up. Needless to say, for no reason at all, he
started laying into me and humiliating me and telling me I’m a big failure, that I’m never
going to see Austin again, and that I’m mentally disturbed. These and several other
comments totally depressed me and ruined the rest of my day. I know I shouldn’t let
negative people affect me like that, but, even at 39-years-old, I think it’s only natural
that a son would want the respect, approval, and support from his father. — There’s
definitely a WHOLE lot more here, but because it’s family and really personal, I can’t
really get into it.
One of the most ridiculous criticisms I hear is him shaming me because I DO spend a lot
of time on Facebook. The reality is, that has been one of the major outlets that has
prevented me from getting too depressed. Reconnecting with my friends as been really
nice!
Let’s hope tomorrow is a whole lot better!
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February 24, 2009
Today has been good, so far. Up until a couple hours ago, I didn’t have an upset
stomach. All I had to eat all day was some oatmeal for breakfast. At around 4:00 or so, it
started coming on again.
In any event, I decided to take a walk outside. In the afternoons, if it’s not too windy and
the sun is out, it’s actually pretty warm out. So, I went across the street to see what the
neighbor’s dog was up to and to see if she’d be interested in going for a walk. (Stupid
question).
We walked a LONG time. For the first half-mile, I was trying to teach her (the dog), how
to heal. I’ve trained a few dogs now how to do it, (even the little pug that was taken
away from me). So, I figured after some time, Bludog (the name of the dog), would be
able to catch on pretty quick. However, as we were walking, I noticed there were still
some trust issues between us — she wasn’t used to me taking such an authoritative role
over her, so, the corrections I was giving her were initially met with her resistance and
pulling away, which, of course, is the totally opposite response I wanted. I knew going
into it that I was handicapped because I didn’t bring any treats with me, which basically
meant that I would have to step up the verbal praise whenever she did what I wanted
her to do. She’s definitely a good and trainable dog — very nice trait to find in a dog! I’m
not sure which is more important, intelligence or the desire to please. It must be a
combination of both, I guess. — We didn’t go as far as I liked, but, I could tell she was a
bit stressed out by the new experience, so I released her and just let her go wherever
she wanted for a while. We finished our hour long walk and I was able to put almost 4000
steps on my pedometer!
February 27, 2009
My regular, monthly biopsy at Northwestern Hospital in downtown Chicago was today.
My dad, who refuses to take the toll roads because he’s mad about having to pay a fine
for missing payment on a toll a couple months ago, was only willing to drive me in if we
left at 4:00 in the morning. Also, instead of waiting around in the hospital, he just wanted
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to turn around and head back to Rockford, making it somebody else’s problem to come
and pick me up. His reason for not wanting to wait for me for a few hours, he just didn’t
want to.
So, my aunt, who’s gone way, way, way TOO far to help me out, ended up being my
chauffer both ways.
It was actually a VERY good experience this time! There was hardly any waiting at all! I
was in and out of there as fast as I could have been. I was able to catch up on lost sleep.
Afterwards, Moch and I went up to the 19th floor of the Galter Pavillion in order to meet
with Dharti, my nurse practioner. I shared everything that’s been going on, including the
gastric problems I’ve been battling every day. Dr. Cotts, a really, really super nice guy,
was in a very good mood and decided to drop in as well. They really want me to make
appointments with the a psychiatrist (to evaluate my ADD medication), as well as with
the infectious disease people (since I’m even more susceptible to TB and other
contagious diseases).
We had a nice lunch in the cafeteria. I noticed that the building that was being torn down
outside my window when I was in ICU on the 8th floor, was pratically demolished, with
only 2 floors left.
Finally, I want to express a note of thanks to all of you who have responded to me
privately regarding my troubled relationship with my father. The encouragement is
extremely welcomed, as it is definitely a tough situation. (He doesn’t read this blog so I
know I’m safe writing about it here.)
God Bless Everyone!
Love,
Steve
March 1, 2009
Earlier, I got back from seeing a very good movie, “Gran Tourino” with Clint Eastwood. I
went with my aunt and uncle and some friends of their’s. It was one of the best movies
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I’ve seen in a long time.
It taught me a lot about honor, prejudice, sacrifice, and justice. I learned that the best
way to seek revenge on someone is not by playing dirty, but by allowing their own bad
characters get the best of them and making sure they are exposed when it happens.
For those of you who know me and my situation well, you can understand where I’m
coming from.
This was actually a very good day. I was able to get a lot done. (That’s always been my
measure of the valuation of a day. If it was “productive” then it was good. If it was only
“fun”, it is irrelevant.)
I was able to finally get my huge Motion to Modify Child Support completed and mailed
off. I just simply cannot afford to pay over $1500/month for a single two-year-old boy like
I did before (an amount that I think is ridiculous anyway). It’s not that I’m a “deadbeat
dad” (a term I’m sure has been used in reference to me in conversations I’ve not been
privy to), but, my ex-wife has just not been all that honest with her income. I’m sure I
probably went way overboard in writing so much and providing a ton of evidence, but,
since I haven’t done too well in the courts, I figure it’s better to provide too much than
too little.
What I’m having trouble figuring out is, divorce’s with children happen all the time. I’ve
just been so beside myself in guilt and sadness and concern because I’m not seeing my
own son on a daily basis. As a father, I don’t think I feel any less loss than a mother
would. How do people deal with this? I want to know what he’s doing right now! I want to
know how his day went! For God’s sake, I want to know what he LOOKS like!
March 3, 2009
Ok so I think I’ve figured out why the insomnia has been bothering me – it doesn’t really
exist! The trouble I’ve been having getting to sleep at night is because I’m simply not
tired. It’s true, I often sleep during the day, but I’ve noticed that on some days I
get/need more sleep than others. But, I’m not really going through my days feeling tired
all the time. For instance, I might go to bed at 11:00pm one night (which is really, really
early for me), and sleep 10 or even 12 hours! The next night, I’ll go to bed at my normal
time (like 1:30 or 2:00), and just not be tired at all, so, I’ll fall asleep later, like around 5,
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and then wake up again only a few hours later. That’s what it was like lastnight.
So what is this telling me??? Well, since I don’t really have a normal schedule like most
people are on (i.e. having a routine), I don’t ever really have that same strong sense of
urgency that I used to have. (is this what being retired is like?) Anyway, what I think
this means is simply that a person’s “biological
clock” isn’t the same as the 24-hour schedule that we’re all tied down to.
I think I read about this once, too. Sleep studies have been done which demonstrate
that when people are left in facilities without any sunlight or clocks, and no particular
schedule, they will naturally adopt a cycle of sleeping 14 hours, and then staying awake
for 30 hours or so. In other words, we would be awake a lot more than we are now.
March 7, 2009
I suppose you could say I hit another milestone yesterday. It was a pretty decent and
warm day, (like 60 degrees or something), so I decided to go for a little bike ride. Since
I’ve been riding stationary bikes over at the cardiac rehab place, I thought for sure I
might be able to ride a real bike for a change. Once I got used to the bike and got it into
the gear I wanted (like the lowest possible), it didn’t turn out to be too bad. I was a little
nervous riding along the side of the roads since the cars go speeding by right next to
you. Out here in this little suburb of Rockford called Cherry Valley, there aren’t any
sidewalks. My aunt said I should go and try using the bike paths which is supposedly
somewhere near here. Maybe I’ll do that next time; yesterday, I just wanted to see if I
could do it again. — I’m feeling pretty confident that my recovery is going to be
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accelerating here rather quickly, especially since the weather is getting nicer.
I’ve had a chance to visit with a couple old friends that I knew from college (i.e. Trinity
College) who are also living here in Rockford. One of them, Keith Wrage was a roommate
I had. He and his wife April (who also went to Trinity, have a son that they call “Trey”).
Then lastnight, my friend Lisa Johnson, with whom I was in the college choir, came by
after work and we just went over by the mall (Cherryvale Mall), and talked for a couple
hours.
While I’m not seriously or aggressively looking for a job again, I have been getting ready
for my job search, doing a lot of research online about what skills are the most
marketable right now, reading job descriptions, taking note of “buzz-words” and phrases,
how to write/format my resume and cover letters. It’s very challenging.
In the meantime, if anyone knows of any potential and small Access database,
programming, or web design projects that I could do on the side, feel free to let me know
or to forward my contact info. (For those that are familiar with a technology called
“SharePoint”, that is also an area of expertise that I have.)
March 12, 2009
You all may have noticed that my CaringBridge posts have been getting less, and less
frequent. You can probably assume that that is good news! It’s not so much that there
isn’t a lot going on anymore, it’s more of an issue that I’ve fallen into a routine that
doesn’t bear repeating over and over again. So, I’ll probably be closing up this site pretty
soon, and am thinking about moving my journal/blog over to Facebook. I’ve been told I
should write a book about all of my experiences over the past few years and I may just
start a new page on FB to do it and possibly even get feedback as I write.
One really good thing is that I haven’t really been too sick to my stomach for a change.
THAT is REALLY a good feeling!
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March 16, 2009
I didn’t have rehab this morning as I usually do, since our particular “class” was
cancelled. (That’s just in case any of who were wondering why I was still home at this
time on a Monday morning — WELL, NOW you know!) — They’ve been gradually adding
to my regimen, different bikes, stairs, and a little balancing thingy that I have to stand
on for a minute.
Like I thought might happen, the exercises are becoming way too easy. The weather has
been getting nicer and nicer and so it’s been easier to get outside and take longer walks.
Plus, yesterday, I even took another bike ride. That included going up a few hills. On
Saturday, I even raked some of the leaves here at my aunt and uncle’s.
I’ve also been boning up on my computer skills again. It’s almost been a year now that
I’ve been out of work and I want to make sure that I don’t lose my marketability for
whenever I’m able to go back to work. I set up a little intranet site here at the house and
am excited about doing some work on it.
My 40th (gulp!) birthday is coming up on the 22nd. Plus, I’ve been missing Austin (my
son), like crazy — more and more as each day goes by. I’m thinking about making a little
home video for him. My family has a lot of March birthday’s (my uncle’s birthday is on
the 22nd too!), so, we’re all going to gather here next Sunday for a little party. Austin
hasn’t seen these relatives of his for years now.
March 19, 2009
Here’s a fantastic irony:
As a kid, for several years, I babysat my cousins, Connie and Brittany, even as
babies. I’ve been able to change diapers since I was at least 11 years old. As
they got older, I was watching them for several hours during the day over the
summer.
In high school, I belonged to a youth group as part of the church I attended
(First Covenant Church in Rockford, IL). I volunteered a couple times with the
church’s Vacation Bible School herding the little kids, sitting with them during
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singing time, playing games with them, and reading Bible stories. — I also went
on a short-term missions trip to a kid’s camp in Virginia. I made friends with
several under-privileged grade school kids. I even distinctly praying the
“sinner’s prayer” with one of the kids to receive Christ as his own saviour. He
was my first among many converts.
In college, I double-majored in psychology and youth ministry. I had a two-year
internship with a junior high ministry at Arlington Heights Evangelical Free
Church in Arlington Heights, IL. I was a small group leader for two years over a
small group of 4 junior high boys. I would do all kinds of fun and serious things
with them including taking them amusement parks and having sleep-overs at
my apartment. Their parent’s loved me.
Also during college, I frequently accepted jobs as a baby-sitter for local parents
who would be out for the evening. I was called upon several times by the same
parents.
Also in college, I spent one of my summers earning money by staying nearby
the school (since I was forced to pay my own way), as a live-in sitter for a young
couple who had 2 little twin toddlers (Patrick and Kathleen), and their special
needs brother who suffered from hydrocephalus. I was paid $75/week (plus
room and board), to watch and play with the kids. This also included going on a
week-long vacation with the family to a lake.
In seminary/graduate school, I befriended an 8-year-old boy and his single
mother who lived next door to my apartment building. She was also struggling
financially, and my heart went out to this fatherless boy. I offerred his mother
free baby-sitting services whenever I was available. This included every Sunday
morning, and little Ryan became an active member of my church’s Sunday
school. At other times, I would play tennis with him, take him mini-putting,
swimming, watching movies, etc. And, even though I was a professional
software instructor in the Chicago area, I always kept track of Ryan’s soccer
game schedule and attended most of his soccer games, even if it meant driving
all the way across town. (I just felt so bad for him as I saw the other boys’
fathers standing and watching from the sidelines, except for Ryan). I also
remember once cancelling my Friday night plans with my friends because Ryan
suddenly wanted to come over and stay the night at my place. — That same
night, I was watching him playing his video games (something I don’t EVER go
near!), and I was casually asking him about his friends. I asked who his BEST
friend was, and while expecting him to name someone from school, he shocked
me by saying out of the blue, “It’s you.” — I would spend the next several years
being Ryan’s surrogate father and did whatever I could to make sure he and his
mom were ok. — One of the hardest decisions I ever made was to move away
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from them in 1999.
It’s 10 years later now and I finally have my own son, who will be 3 on July 22,
and yet, I haven’t seen him in almost a year now. This is partially due to my
illness, but also to the twisted judicial system of Minnesota which has believed
the lies that have been told about me that I am somehow unfit.
I’m going to be 40-years-old on Sunday. I’ve been spending several nights unable to
sleep because I miss Austin so much. He wouldn’t even recognize me, and, I don’t know
either how he has changed in the span of a year. This is despite the multiple requests
I’ve made to have a recent picture sent to me.
March 19, 2009
Here’s a fantastic irony:
As a kid, for several years, I babysat my cousins, Connie and Brittany, even as
babies. I’ve been able to change diapers since I was at least 11 years old. As
they got older, I was watching them for several hours during the day over the
summer.
In high school, I belonged to a youth group as part of the church I attended
(First Covenant Church in Rockford, IL). I volunteered a couple times with the
church’s Vacation Bible School herding the little kids, sitting with them during
singing time, playing games with them, and reading Bible stories. — I also went
on a short-term missions trip to a kid’s camp in Virginia. I made friends with
several under-privileged grade school kids. I even distinctly praying the
“sinner’s prayer” with one of the kids to receive Christ as his own saviour. He
was my first among many converts.
In college, I double-majored in psychology and youth ministry. I had a two-year
internship with a junior high ministry at Arlington Heights Evangelical Free
Church in Arlington Heights, IL. I was a small group leader for two years over a
small group of 4 junior high boys. I would do all kinds of fun and serious things
with them including taking them amusement parks and having sleep-overs at
my apartment. Their parent’s loved me.
145 / 236
Also during college, I frequently accepted jobs as a baby-sitter for local parents
who would be out for the evening. I was called upon several times by the same
parents.
Also in college, I spent one of my summers earning money by staying nearby
the school (since I was forced to pay my own way), as a live-in sitter for a young
couple who had 2 little twin toddlers (Patrick and Kathleen), and their special
needs brother who suffered from hydrocephalus. I was paid $75/week (plus
room and board), to watch and play with the kids. This also included going on a
week-long vacation with the family to a lake.
In seminary/graduate school, I befriended an 8-year-old boy and his single
mother who lived next door to my apartment building. She was also struggling
financially, and my heart went out to this fatherless boy. I offerred his mother
free baby-sitting services whenever I was available. This included every Sunday
morning, and little Ryan became an active member of my church’s Sunday
school. At other times, I would play tennis with him, take him mini-putting,
swimming, watching movies, etc. And, even though I was a professional
software instructor in the Chicago area, I always kept track of Ryan’s soccer
game schedule and attended most of his soccer games, even if it meant driving
all the way across town. (I just felt so bad for him as I saw the other boys’
fathers standing and watching from the sidelines, except for Ryan). I also
remember once cancelling my Friday night plans with my friends because Ryan
suddenly wanted to come over and stay the night at my place. — That same
night, I was watching him playing his video games (something I don’t EVER go
near!), and I was casually asking him about his friends. I asked who his BEST
friend was, and while expecting him to name someone from school, he shocked
me by saying out of the blue, “It’s you.” — I would spend the next several years
being Ryan’s surrogate father and did whatever I could to make sure he and his
mom were ok. — One of the hardest decisions I ever made was to move away
from them in 1999.
It’s 10 years later now and I finally have my own son, who will be 3 on July 22,
and yet, I haven’t seen him in almost a year now. This is partially due to my
illness, but also to the twisted judicial system of Minnesota which has believed
the lies that have been told about me that I am somehow unfit.
I’m going to be 40-years-old on Sunday. I’ve been spending several nights unable to
sleep because I miss Austin so much. He wouldn’t even recognize me, and, I don’t know
either how he has changed in the span of a year. This is despite the multiple requests
I’ve made to have a recent picture sent to me.
146 / 236
March 24, 2009
Yesterday was my 40th birthday. (It was also my uncle, Ethan’s birthday as well.) We had
a nice party over here at my aunt and uncle’s house to celebrate all of the March
birthday’s in our immediate family, mine, Ethan’s, Sydney’s, and Connie’s. Our total
combined years is 149. There were quite a few people here and it was definitely a lot of
fun!
I know I had talked about retiring my CaringBridge site here on my birthday, but, I think I
might keep it running for just a bit longer.
I got a nice surprise at rehab this morning. I found out that since I have been progressing
so well, I’ll probably be able to be discharged earlier than originally planned.
By the way, if anyone would like to chat w ith me in real-time, feel free to do so on
Facebook. I’m always online over there and since it gets lonely sometimes, it would be
nice to say “hi”!
March 29, 2009
I’m not sure if I mentioned it before but I was officially discharged from cardiac rehab
yesterday! The workers there were really sweet to me. They came out with some
stoupid noise-makers and yelling “YAAAAAAY!” And brought out a hoky “Certificate of
Completion”. It was only my 24th visit and I was supposed to have gone for 36 times.
But, apparently, they were so pleased with my progress, that they felt it was time for me
to continue on my rehabilitation on my own.
I’ve started lifting weights and really understand now why my own body weight is still so
low (circa 120 – 125lbs). It’s because any muscles I used to have have somehow
withered away. I used to EASILY be able to do bicep curls with 25lb dumbbells. Now, I
can only do it with 5 pounders! — An old college roommate of mine, Keith Wrage,
brought over a real nice set of dumbbells for me to borrow while I’m here. They go from
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5lbs all the way up to 50lbs! I remember when I could do tricep exercises using a 70lb
dumbbell! NOW, I can’t even LIFT a 50lb weight using BOTH hands!
If I didn’t have much greater concerns ini my life, (like wondering how the heck am I
supposed to find my spring clothes which are buried in a storage shed somewhere), I’d
be totally depressed about my atrophied body! But, actually, I’m excited about seeing
myself progress. I did think about getting a membership at a health club, but my
disability checks have only now just started coming in and I don’t even have a checking
account!
It HAS been nice/good reconnecting with people whom I haven’t seen in a REALLY long
time! These have mostly been college friends that I haven’t seen in over 20 years!
Thanks to Facebook, I’ve been able to re-establish friendships I thought had ended.
March 31, 2009
I have updated my Caring Bridge story, (click “Read My Story” above) which
provides much more background information leading up to my heart failure
issues. Since I have lost touch with many people from my past lives and have
just been reunited via FaceBook, I am frequently asked about what the past
few years have been like. Hopefully my story will put some of the pieces
together.
Since there’s a character limit, I had to leave a lot details out. Feel free to add
me as a Facebook friend (Steven W. Berg from Minneapolis) and I’ll answer any
questions you like.
If you haven’t already, PLEASE click the check box above to add yourself to my
mailing list. I try to provide updates a couple times a week.
Thanks and God bless!
– Steven Berg
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April 1, 2009
I suppose part of my recovery involves getting back up on my feet, both physically and
emotionally, but also financially and socially. Although they never actually went away
but were put on hold, many of the stressors that helped put me into the hospital in the
first place are finding their way back on my plate again.
Since I’ve had absolutely no income, I haven’t even had a need to have any bank
accounts. (While it HAS been annoying not having an ability to compensate others for
whatever consumables they’ve provided on my behalf, I must admit, I CERTAINLY don’t
miss all of the overdraft notices and bounced check fees!)
In any event, one of my OLD friends from Trinity College, who happens to live here in
Rockford, was kind enough to take me to the bank in order to open up a new
checkings/savings account using the money I received from Social Security.
There are several individuals to whom I owe a lot of money, but, my ability to pay
everyone back is greatly diminished and will have to be stretched out over a much
longer time. It really is quite a shift, being at rock bottom and starting over. But, on
another level, it really isn’t all that bad, somewhat refreshing, too.
I finally received my first disability check a couple days ago and was even able to op
April 6, 2009
The past few days have been both fun and frustrating. Last Wednesday
evening, my old (not necessarily a reference to his age) youth paster, Bob
MacRae from First Covenant Church in Rockford, IL, treated me out to dinner.
He told me that no restaurant was off-limits. So, naturally, I chose my favorite
cuisine, Thai. I’ve been so out of touch with “The Best of Rockford,” that I never
in a million years would have imagined that the city would have become so
progressive as to have Thai food! AND, not just ONE, but THREE! — This little
place, called Thai Basil Fusion, has to be given a lot of credit! My sister, Sue,
brought me there once when the arctic winds were a little bit more harsh. They
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made a VERY good use of the space they have, with a cozy bar area up at the
front, large but unobtrustive pods in the middle, the plush, thick walls of which
extend nearly up to the ceiling and are perfect for larger parties. The decor is
very modern, yet still distinctly Asian (and with NO tacky fish tanks as far as the
eye can see!)
I’ve eaten there twice and have only found the found to be slightly better than
mediocre. I’m not one to be shy away from spice, but, when I can’t tell the
difference between a piece of chicken in my Panaeng Chicken and a burning
ember, I think they may have gone too far. However, Bob’s Pad Thai came out
looking perfect!
On a note of bittersweet discouragement, my disability checks started coming
in last week! But, I’ve recently just found out that Medicaid won’t pay for the
first $1200 of my monthly medical bills because of this thing called a
“spenddown,” which, evidently works like an insurance deductible. This is
terrible news because it means that most of my medicines aren’t going to be
covered. (Just ONE monthly prescription of one of my anti-rejection pills costs
over $1500!). — This is making it even more urgent for me to try and find a job
that will cover my medical expenses.
Over the weekend, I had some fun with some old college friends. My old
roommate from Trinity College, Keith Wrage came and picked me up and we
went to a nice little coffee shop chain that’s here in town called, Meg’s. We met
up with one of Keith’s old friends from church, Doug. After we’d had enough
there, we drove over to a chic restaurant in downtown Rockford called Octane.
Again, I was very impressed that such a trendy, unique place exists in
Rockford! Doug bought the three of us dinner. Since my appetite hasn’t been
what it used to be, I just had a couple bites of the chicken skewer appetizer and
a bunch of diet cokes. It feels SOOO good to be out in the real world again!
For some unexplainable reasons, I’ve just been so, so, lethargic and having
barely enough energy to get out of bed! There were a couple days where all I
did was lie in bed, sleeping. I had even gone to bed early and then slept 12 – 14
hours.
“Did you call the doctor?”
“No!”
“Why not?”
“Because I’m not in pain, I don’t feel sick, and it hasn’t been longer
than a couple days. Besides that, I just don’t FEEL like it!!”
“Well, I think you should call the doctor.”
<sigh>
I KNOW that people care, (referring to numerous family members and friends,
btw, not anyone in particular), but I’m almost wondering if there’s a sign on my
back that says, “DON’T LET THE GRAY HAIR (hidden behind the blonde
highlights!) FOOL YOU! I REALLY WAS JUST BORN YESTERDAY!” — For pete’s
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sick, (who’s pete anyway? St. Peter?), I just turned 40. If the thought of calling
the doctor hadn’t occurred to me on my own, then, frankly, I think I’ve definitely
got deeper issues that need tending to, first! — I’m also going on a campaign
against the phrase, “you should . . . ” I’ve rarely, if ever, experienced a warm
sense of euphoria after any sentence that began with those two words.
Personally, I’d prefer it if people simply presented me with OPTIONS to consider,
instead of assuming that their directives are welcome.
I’m desperately needing some prayer for tomorrow. Although it’s a relatively
minor, largely administrative matter, I am representing myself in court
tomorrow afternoon in order to get my child support payments reduced. The
affidavit for the motion that I submitted is very lengthy, if not, excessive. (My
ex-wife was supposed to be receiving over $1500/MONTH in order to care for a
two-year-old child! This was similar to an amount that she called “minimal”
during the court trial.) — In any event, now that I’m strictly on disability, there’s
obviously no way I can afford to pay this. Again, although it should be a nobrainer,
(usually there’s just a magistrate that overhears these cases, but,
because there was another case that opposing counsel filed on this particular
date, Judge Quam is going to hear this one at the same time.)
April 8, 2009
So, yesterday was a lot of fun! — I had a conference call, hearing with my ex-wife, her
attorney, and our judge, Jay Quam.
My only purpose for being there was to get my child support obligations reduced.
Evidently, just as I was suspecting, that is relatively a no-brainer, administrative matter.
But, I was wanting to be extra, extra careful since I was doing this thing pro se (meaning,
by myself, without an attorney) so I made sure I provided as MUCH information as I
could, I know I went totally overboard. (My ex always complains about how “LENGTHY”
my affidavits are. All I can say to that is that it can’t hurt to learn a few new hard words
now and then — I doubt one’s vocabulary benefits much from watching Bridezillas) —
Luckily, that’s all it was and it looks like my obligation is finally going to be drastically
reduced.
Also, I found out that she finally bit the bullet and has gone back to work on a full-time
basis. (How she ever thought she could get away with this idiotic, unbiblical divorce and
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NOT go back to work has always dumbfounded me.)
Anyway, the final thing which I have to take care of is settling a contempt charge that
she placed on me. It has to do with my old 401(k) which I had agreed to sign over the
funds to her. She and her attorney have been complaining about that, too. Instead of
taking the whole amount out in a lump sum, I split it in half, and then in half again. I’ll
have to review my notes from last summer, to understand what my thinking was there.
— I guess I find it totally ironic (and yet, WELL within the personality profile of a
narcissist), that she would say she is “sick and tired” of playing these “games” and trying
to get me to comply to the court orders when our financial ruin falls primarily in her
lap. (She STILL hasn’t refinanced the upside-down negative-amortization loan on the
house she’s living in.) Also, it was her choice to shatter the marriage even though I and
the senior staff at Wooddale Church (including the youth pastor she lied to in order to
help her abandon our house on May 17, 2007) pleaded with her not to go this route.
I know I sound angry here, and I probably shouldn’t be complaining myself, but, I guess,
sadly, that’s the nature of divorce — it also explains why God HATES it! Ironically, I
really, really, really DO want for us to handle this whole thing amicably. I hate the
fighting back and forth. (I only fight because I refuse to lie down and just be walked all
over by her.) — Granted, I can’t STAND her, and I don’t know how I could ever forgive
her, but, she IS my precious baby’s mother. It never made sense to me why she is
willing to jeopardize AUSTIN’S happiness so as to feebly attempt to protect her own. I
couldn’t care less what the world thinks of me, so long as the little boy is happy — the
way this is going, however, it’s unlikely that he’s not going to have problems. (GOD I
miss him!!)
I have NEVER run into another person so heartless, so immature, so unweildingly selfish,
and so miserable. I keep replaying in my head, over, and over, and over again how
mean she has been to me — and, without ANY remorse whatsoever. (How does someone
deny a father with his FIRST child the opportunity to see him on my first Father’s Day, or
on the child’s first birthday???? — That’s just sick and inhumane in my mind. I NEVER
NEVER NEVER would have done such a cruel and discpicable thing to her — not even
now! — All my friends, Christian and non, STILL cannot get over the fact that she actually
tried to change Austin’s last name back to hers’! I know I may have various issues of my
own to deal with, but the kind of psychosis someone must suffer from to do and say what
she has to me and my family is utterly beyond my comprehension.
Anyway, again, I apologize for venting my feelings here. Currently, this is the only venue
I have. Please DO continue to pray for us, (myself, Austin, and even my ex-wife) — if we
ARE professing Christians, (and I’m totally willing to stand up and admit my crimes and
sins — if there are any left to admit to!), then this behavior is so childish, so wrong, and
so damnable.
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“O God! I can’t even count the number of times I have pleaded with you to heal this
situation! — No matter what the case, I’m going to do everything I can to stay healthy
enough to watch my boy grow up. (WHY??????? is she SOOOO much more concerned
about money, than she is about our son’s welfare? Here I am, wishing I even had the
LUXURY to complain about what a hassle it has been to try and squeeze (LITERALLY), the
very last remnants of my former prosperity out of me. Even her forked-tongued, manhating
snake of a lawyer has been nicer to me – throughout my entire ordeal with my
heart issues, NOT ONCE did I ever hear from her expressing her concern for my health —
in fact, once she found out my grave condition, the next thing I received from her was a
demand for MY life insurance!! — I need to keep reminding myself of things like that; I
have a tendency to want to put those out of my mind and act as though it never
happened and be nice to her — but, the ruthless, totally uncaring ways that she has hurt
me.
It would literally be one of the happiest days of my life if she contacted me out of the
blue and wanted to talk. SOOO many of these issues between us could easily be
resolved without lawyers and courtrooms. I BEGGED her back in 2006 not to go this
route! If she honestly thought I was just going to lie down and take this, I’m sure she
knows better now. And, still, I WON’T give up until I believe things are fair, which,
unfortunately, means we’ve got a LOOOOOONG way to go still. I guess we should each
get used to living at least one tax bracket below where we were.
Oh God!! I gotta get out of this little funk. I just received HER affidavit and am supposed
to respond to it now. No doubt, the battle continues! (eyes rolling) I’m so tired, and, I’ve
got another biopsy tomorrow.
April 8, 2009
.
.
.
.
.
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.
April 8, 2009
Yesterday I had a conference call hearing with Judge Jay Quam, my ex-wife, and her
attorney. Although I was very nervous, I do feel it went fairly well. I represented myself
(pro se), and had done all the legal work myself. Just as I had figured, the request for
child support reduction was just an administrative issue, since, I’m LITERALLY bottom of
the barrel broke. —
For some reason, I don’t think the ex believes that! She keeps demanding more, and
more, and more money from me, as if I had an endless supply. Also, in her latest
affidavit that she sent in response to my affidavit, she has the nerve to ask the judge to
impose contempt charges on me! ONE of them, AGAIN, for my life insurance!! (As you
might recall, Her Royal Crassness actually had the audacity to demand this only a couple
weeks after finding out that I was gravely ill! — Someone who could even THINK of doing
such a thing to another person must have a severe pathology!) — For the first time, I
think, in my life, I actually feel sorry for this person. I’ve come to understand her so much
better now that we’re apart. The predictability is uncanny.
In any event, her responsive affidavit was a delightful reprieve from the mundane,
providing me with much needed entertainment. I was given a week to respond to it, and
while, it should be no problem to do, it will just take some time.
Thanks again to all of you who were praying for me.
On another note, I have another biopsy at Northwestern tomorrow morning. My aunt is
going to drive me in and instead of my going back to Rockford, I’m going to stay in a
hotel overnight, that my sister was nice enough to book for me. This is because I have
two more doctor’s appointments on Friday morning, too. So, no one was really too
thrilled about driving me in and back two days in a row. I had OFFERED to take the bus
in, but evidently, my family believes the word “FRAGILE” was engraved down the center
of my chest instead of the scar that I (wink-wink) KNOW is really there 🙂
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April 12, 2009
It’s Easter Sunday. (Well, I still haven’t gone to bed yet from Saturday.) Easter is
significant for me for one primary reason. It was on this day, in 1987, right after I had
turned 18 years old, that I was baptized — Baptized in the name of the Father, the Son,
and the Holy Spirit. This was at First Evangelical Covenant Church, 22 years ago!!
Since I had grown up believing the beliefs of the Jehovah’s Witnesses, a very antitrinitarian
religion, and had spent the previous 4 years struggling with my faith and
desperately wanting to know the truth, particularly the deity of Christ, this public
confession of my faith was definitely a life-changing moment in my life. Unfortunately, it
also meant being disowned (temporarily, that is) by my mother who was devastated, and
treated like I’d been brainwashed by my father.
Back then, I was very smug, but yet, still teachable. Because I’d learned JW theology
inside and out, and read the Bible continuously, the other kids in the youth group weren’t
accustomed to another non-Christian with so much knowledge. When I first showed up
at this church, by the invitation of a friend I’d met in High School, I had built up such an
animosity towards this and other churches of “Christendom,” believing that their sole
reason for existence was money. (Oh how I remember the lumps in my throat as the
collection plate was passed by!)
Shortly after that, I went to a Christian college appropriately named, “Trinity” where I
double-majored in Youth Ministries and Psychology (having completed both within 4
years!). I had to work myself through school since my parents refused to pay for it
because I didn’t go to a school that THEY approved of. While it’s true I could have
chosen a better institution, Trinity was close enough to my hometown of Rockford, and it
allowed me the immersion into true Christianity that I needed at that time.
Being surrounded by so many Christians, taking several Bible classes, going to chapel
services 3 times a week, allowed me to get caught up to speed after spending 17 years
of my life in a very distorted version of God’s truth.
It was here that the concepte of God’s grace and total forgiveness began sinking in.
Most of us have such a “works-oriented” mentality toward salvation, as if it was
something to earn or achieve! To think that ALL we have to do is to be broken by our
own sin, realizing that we’re helpless to overcome it on our own, and confess it to God
with a genuine intent to allow HIM to change us that we then have Eternal Life!
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(Ephesians 2:8, 9).
This acceptance of God’s offer of salvation, (which is nothing less than an offer to have a
restored relationship with Him which was severed as a result of our sin), is extremely
personal and private. Although there may be others witnessing the event, it is an
interaction strictly between our spirit and God’s. It is very much parallel to a man
proposing to his girlfriend. He asks her to make a choice to be in a loving relationship for
the REST of their lives. By him asking her, “Will you marry me?” he’s asking her to leave
her former life and to join HIS. It is the same thing with Christ. He holds out His hand to
us, asking us to join Him, to leave our former lives of sin, and to have a relationship with
Him.
When the couple appears at the wedding, it is a public event, held before the church
community. The groom is there, standing at the alter, waiting for her. It is SHE, the
bride, who must COME to HIM!! Her former caretaker, her father, hands her over to her
new caretaker, the groom. They pronounce to the world the commitment they had
already made in private and expose their commitment to each other, TIL DEATH DO US
PART. — This is not unlike our baptism, which is also a public event. Each of us, as the
Bride of Christ, approaches the baptizer who represents the Groom. These two have
already made their promises to each other personally, but now is the time for it to be
witnessed before the Church. The dunking into the water, representing both Christ
washing us free of our sin as well as the dying to ourselves, (i.e. the lowering as if in a
coffin), and being born again into a new life with our now Husband, Jesus Christ. While
we commit to our earthly spouses, “til DEATH do us part,” to Christ we commit “til
ETERNITY do us part!”
It was this stark realization I had that gave me a whole new reverence for marriage and
the ceremonies that go along with it. I do not know if God has that blessing in store for
me again or not, but, it is a real, earthly metaphor, (that may be helpful during
evangelism), to illustrate God’s gracious offer, to be totally forgiven, and to spend
eternity with Him!
God Bless Everyone, and, remember: HE IS RISEN!!
– Steven Berg, (Easter 2009)
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April 15, 2009
I’m not sure if I ever provided an update on my visit to Northwestern last Thursday and
Friday. (Gee, how hard would it be I guess to click the mouse a couple times and find
out!??)
My aunt, Janet, drove me in very early Thursday morning for my regular monthly biopsy.
I had packed a couple bags because I was going to spending the night since I also had a
couple other scheduled appointments on Friday as well.
The first specialist I had to meet with was a psychiatrist, Dr. Arenas. My cardiac doctors
wanted me to see him to discuss the psychotropic drugs (Zoloft and Adderrall) that I’ve
been on. The more intense depression that I’ve been experiencing has been due my son
being taken away from me, in essence. (In my mind, it takes a special kind of cruel
monster who would try to set up as many obstacles as possible between a parent and
their own child; especially if it is the other parent.) The Zoloft (Sertraline) dosages I’ve
been on, hadn’t been seeming to work, but when the Adderrall is thrown in there, too, he
believed the mood stabilizing effects were probably beneficial. His recommendation was
that I should maintain both medications.
It was pretty cool because within an hour-and-a-half’s time, I was able to explain
everything that has been going on with me recently, even the drinking problem I used to
have the whole time that my ex and I were together. I also discussed with him how
agonizing it has been not being able to have had contact with Austin.
April 15, 2009
Continuing from yesterday, (by the way, I decided to delete a lot of the material I posted
yesterday, as I’ve noticed that I’ve been starting to use this site as a personal journal for
myself rather than considering the fact that I have an audience reading what I write! I’ll
probably move a lot of stuff like that over to a blog on Facebook and have different
sections that are public and ones that are very private.)
Anyway, Dr. Arenas suggested that the anger I feel is a good thing and that I might want
to consider ways that I can constructively channel it. For instance, since I believe I was
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unjustly handled by the Hennepin County justice courts, and that several of the laws
regarding “parenting time” and custody are so biased towards the mother (by the way, I
highly recommend a book called, “Throwaway Dads” It’s about this very thing. It’s
about how there is a common myth that MOTHERS are, by nature, the better parent than
fathers; when, in reality, it’s totally untrue. Divorced fathers are just tossed away,
considered to be irrelevant, the only thing they’re good for is to be an extra source of
income for the mother. It’s just so, so, so sad — dad’s being denied the opportunity to
show their love for their children than their mothers do.
I never thought I’d feel such a strong desire to see and be with my son. Even though
he’s totally been out of my life for the past year, I obssess about him every day, and
think about him as if he were right with me. I’ll see something around me, and the
thought will enter my head, as if Austin were talking to me,
“Daddy, why does the moon look a whole lot bigger in the afternoon than it does at
night?”
“Daddy, does God really know what I’m thinking about all the time?”
“Daddy, how come I have to learn math? It’s so boring.”
Right now, like I said, Austin must be a little bit further along than my cousins kids, Ross
and Reed, who are starting to use real words. They pretty much just parrot what they
hear. It was so adorable today, for instance. I was sitting in my room, and little Ross
was just getting up from his nap. He wandered into my room, somewhat sheepishly, I
looked up from this computer which is attached to my lap, smiled real big, and said, “HI
BUDDY!!” He smiled back and said the exact same thing, in the exact same tone and
manner as I did.
Anyway, I gotta get to bed, but I just wanted to finish by saying that once I get back to
Minnesota, I’m going to start getting involved with some Father’s Rights groups there,
tell my own story and let other dad’s have a chance to speak out and express their own
feelings too. Perhaps even doing some picketing, and handing out flyers and stuff;
ultimately to educate people and then maybe even see some of these sexist laws get
changed!
That sounds therapeutic, doesn’t it?
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April 18, 2009
The weather the past few days has just been unbelievably perfect! So, in order to
eschew any possible feelings of guilt by having let the day go by without even stepping
foot outside, I’ve been somewhat making myself go out and getting on my uncle’s bike
for a little bit. They were making me ride bikes quite a bit in rehab, but once you get on
a real one and attempt to go up the slightest hill, you really feel it! But, my formerly
toothpick legs have started to take on some better shape!
I’ve also begun working out with the dumbbells in my room. Boy, when 10 lb weights
wear ya’ out, you know you’ve been through the ringer. But, the fact that I’m gradually
getting stronger, is kind of fun to watch happen.
It really, really is a gigantic “starting over” thing in soooo many ways! Although I’m
definitely still the same person after all that I’ve been through, being given a chance (or
rather, FORCED) to start over is certainly refreshing. A couple weeks ago, I was able to
open my first checking account at a bank, using the money from my disability check. (I
found out, though, that $1200 of that has to be used for my Medicaid “spenddown”
amount before Medicaid will kick in. It works a lot like an insurance deductible. — Every
month, my medications alone will cost $1500 -or so- and the monthly biopsies are
somewhere between $2000 and $2500. — Anyway, pretty much since late last summer, I
have had absolutely no resources anywhere! I guess, in a way, it’s a good thing that I
never really had much saved up in retirement funds, since I would have felt just sick
about having to transfer them over to my ex. But, I’m starting fresh and clean! I
actually wrote down all of my transactions down in my new checkbook register! wanting
to make sure I had everything right, even down to the penny. I’ve decided to make sure
that I’m MUCH more diligent about things like this, instead of being somewhat of a
sloppy, careless mess that I was in the past, having overdraft charges and spending
money without even knowing whether my card was going to go through or not (this is
one thing that my ex-wife was absolutely right on about — I totally did spend a couple
years there just squandering money away -of course, I thought she was doing it too, but
never again, never again! It’s strangely exciting (in a pathetic sort of way, I guess), to
being more responsible.
I was watching one of my favorite TV shows just a little bit ago, Frazier. The character,
Niles, had just had to have some serious heart surgery and after it was over, he had
regained a whole new perspective, an appreciation and respect for life. That was
definitely a good reminder for me, as well. It’s almost unimaginable to think that if we
had left matters in the hands of one of my doctors, I would have died in October. —
When I tell people that I had a heart transplant last year, everyone’s instant reaction is
the same; they gasp and say, “Oh my God!” — I’m almost reluctant to tell anyone, too,
because it just sounds so unreal and made up.
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My faith has been starting to come back again, too; but, in a fresh new way. I’m not
saying I still don’t struggle, and struggle often! But, I don’t believe I was just lucky to
have received the new heart so fast; I know that God was definitely behind the scenes
watching over things. It made me think more so about the Bbible book of Job, as well.
There are definitely many parallels there between what he went through and what I have
been, but, I’m getting tired now and need to shut off. I’ll discuss that later.
Right now, I just need to be so thankful, so grateful not only just to be walking and biking
again, but also just to even be alive! I spend SOOOOO much time every day dwelling on
Austin and getting depressed because I’m missing so much of his life, but, I compare it to
guys who have been shipped off to war in Iraq, or whatever. Many of them have young
wives and little kids at home – and they’ve been away from them for years. It’s not that
much different than me. I won’t be gone forever; I need to keep telling myself that. But,
I’ve been doing so much reading up on the importance the role of fathers is in the lives
of kids and it scares me to think how my absence from him now is having any short or
even long term negative effects. I’ll just keep on praying for him. But, I KNOW it’s going
to break my heart when I see my little guy for the first time again and how he probably
won’t recognize me. I’ll just want to run over to him, pick him up in my arms and never
wanna let go!
April 19, 2009
While sitting on my bed, learning more about a high-in-demand technology that I’ve
become pretty good at doing called “SharePoint”, I was watching an interesting
documentary on the History Channel about the 7 Deadly Sins, a made up list by the
Catholic Church that started out as the 8 Deadliest Temptations, but then was narrowed
down by Pope Gregory the Great in 596 to become the 7 Deadly Sins.
Although “guilt” isn’t one of these sins, the special had a short segment on Dante’s
Inferno, in which the lead character is escorted down into the depths of purgatory and
hell on somewhat of a visitor’s tour. The actors in the documtary could be seen
expressing their feelings of guilt and remorse in various forms. And so, as what
frequently happens to me quite a bit, is my mind will be briefly captured and I’ll have to
take a few moments to stop whatever I’m doing, and think through an issue or problem,
etc.
It was this concept of “guilt” that caught my attiention. Guilt is frequently thought to be
a negative emotion, but, I don’t think that it always is. It is only negative when it is felt
inappropriately. –It has been one of the things I have heard most often in my life from
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others; that is, that I am WAAY to hard on myself.–
However, there are definitely occassions when it is appropriate. Guilt can be a powerful
motivator. Whenever you let down someone you love and respect, you feel guilty. It
motivates you to perform better in the future. The most highly respected manager I
ever had was a woman named Jennifer Wood. She had once given me a particular little
job to do (among several others). It proved to be too difficult or uninteresting for me,
and so I just let it slide. After several weeks of making no progress, she took the
assignment away from me and gave it to someone else. I felt TERRIBLE, meaning, I felt
extremely guilty. NOT because I had screwed up, but because I had disappointed her.
From that point on, I made sure that I always came through for any other assignments I
was given, or, that I would go talk to her if I was running into obstacles.
In my personal life, it is not that much different. There have been several people in my
life that I know I have hurt or wronged. And, depending on my degree of commitment or
love for that person, my wrongdoing was always accompanied by feeling guilty, and
then, naturally, an apology. Here was my realization earlier. The fact that someone
feels guilty and sincerely apologizes, demonstrates that they do care. The person that
they hurt, is someone they really do love. If one person does truly hurt another, and
then fails to admit it (or tries to push it back off on the other with comments like, “Don’t
be so sensitive! Be a man! You need to grow a backbone!”, etc.), then, I don’t think it
can be said the offender truly loves the other.
That should be a big red flag, I think. Proof that there is no real love, and that you
should run away, or maintain a distance.
Today, my aunt and I went over to Aldi’s to use up some of my food stamp money that I
only got for the month of February. Because I was working on that legal stuff last week, I
wasn’t able to send Austin anything for Easter. So, I went and bought him some stuff
that I’m going to pack away in a little gift package and send it to him. I’d also like to
make him a little video recording of myself, so that he’ll remember me. I just hope it will
actually be shown to him.
April 21, 2009
I KNOW it’s extremely late, but I started putting together a little Easter gift box for
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Austin, with some of that plastic grass and a bunch of little chocolate eggs. I also
wanted to bake him some chocolate chip cookies, but that might just be TOOO much
sugar! I may put in a couple toys or some cute clothes for him. My aunt and I went over
to Aldi’s the other day and I used some of my food stamps to buy this stuff.
Like I said the other day, it’s a strange kind of feeling of accomplishment and success to
be able to pay for things on my own again — even though it IS government money!
As far as my health is concerned, I’ve still been feeling pretty good. The weather hasn’t
been that nice the p ast couple days, actually chilly and rainy, so I didn’t take my usual
walk today. (In fact, I only put 550 steps on my pedometer!)
I didn’t realize it until just a few minutes ago, but this was the one year anniversary of
my divorce hearing — but, I’ve decided that from now on, I’m not going to discuss such
issues here on this blog, since it’s primarily dedicated to my health concerns.
I HAVE started a new blog on my Facebook account (go to my profile and click the
“Slates” tab) for anyone who IS interested in reading the ramblings of my mind and
heart. (I will invite all of you on this list who are not already a Facebook member to
become a Facebook friend. When you go to my profile, you will be able to read the daily
journal I’ve been keeping there.)
God bless!
April 25, 2009
Sometime yesterday evening, I started feeling a sore throat coming on. I always start
getting one when the weather starts changing like this. But, then again, it could also
have been due to the fact that the boys were sick last week as well.
Nevertheless, since this is the first time that I had been “sick” sick since being heartsurgery
sick, I called my nurse practitioner at Northwestern this morning. I had been
explicitly told never to take over-the-counter medicines without checking in with them
first. I’ve been pretty anal about the drugs going into my body; I was even hesitant to
suck on cough drops!
Anyway, Kara said I could take some Tylenol for the pain (but no aspirin since I’m taking
a daily dose of it anyway). She also said to watch my temperature carefully as well. If it
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gets above 99, I should give them a call again. Luckily, I haven’t seen it go above 98.0
all day.
“Dear God, please look after Austin right now. I wonder if he can ever tell when I’ve
been thinking about him. I have to trust you, Lord. I know only too well how much a son
needs his father. Help me, PLEASE to forgive those who have taken him away from me
like this! These precious months, and years of his life, he is not being able to share with
me. Why is it so difficult for them to forgive me? It only makes it tougher for me to
forgive them. Lord, bring peace. Guide me to know what is right. The pain and
emptiness I feel every day because he is gone, is becoming harder and harder, NOT
something I’m getting used to. ‘I’m coming, my son! And, I promise to not give up
fighting for you! You are just as much MY son as hers’ and I promise not to let you down,
not at least until you can share your time equally with both of us. I’m coming back,
Austin! I’m coming back! And, I PROMISE to never leave you as long as I can help it.
You will never know how much I miss you!’ — Lord, please, every time I start thinking
about Austin, the rage builds up within me. I’m sorry, Lord, for my sin. I know I’m paying
now for many of the crimes I’ve committed against you and others. Help me, help me, to
forgive even those who don’t believe they need to be forgiven.”
April 30, 2009
I finally got over my cold and sore throat, but have still been having more gastric pains again.
I’ve been lifting weights here in my room, usually late at night. (In fact, it’s the next thing on my
list.) I never thought I’d see the day where I’d be happy to be able to do dumbbell flys with 20lb
dumbbells! I’m still not able to do arm curls with them, though.
A couple days ago, though, I rode my uncle’s bike down to the Cherry Valley library to return a
statistics book I had lent out. Even though it’s only about 2 – 3 miles away (if that), I barely made
it. Even on the lowest gear, I still had to frequently stop and rest. I was proud of myself for
actually doing it, though.
I posted a video to my Facebook account that I found. It’s a video of Austin and me when we was
over at my house for his “parenting time.” I had recorded several of our precious little 7 hours a
week time together. This one was taken in early December 2007. It was also right after the
assinine custody evaluation report came out which did nothing but castigate me, and made me
look like a horrible person and father.
The video is also on YouTube: Austin and Daddy
(I can’t even watch it because it just makes me bawl. She STILL hasn’t sent me any pictures of
him, and NEVER sent a birthday card for my 40th birthday or even a get well card when I was in
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the hospital! — On the contrary, all I got from her was a letter from her attorney demanding my
LIFE INSURANCE POLICY!!! — When I told the Northwestern psychiatrist this, he couldn’t believe
it.)
May 1, 2009
It was a fairly lazy, quiet day. My parents are having a garage sale over at their house,
along with 13 other houses in the same neighborhood. I spent about 6 hours breaking
their internet and phone connection yesterday, as well. (Well, I think they’re modem is
defective.)
The Cellcept pills I’ve been taking have been causing me more gastric pain/discomfort. I
can’t enjoy food as much as I used to, only because it upsets my stomach so much.
Ironically, those particular pills cost $1700/month (so I found out today). There’s another
one, call Prograf which costs $944/month! — I’ve never seen such a thing!
I’ll just be using this site for major health updates, from now on. I’ve started keeping my
regular, day-to-day journal on my Facebook account, which is open to everyone. There’s
a tab called “SLATES” which is where I’ve moved my blog over to. Here you’ll find a lot
of personal information as well as thoughts, insights, and occassional total nonsense! If
you want to subscribe to my posts, you can do that as well to receive notices of updates.
http://www.facebook.com/home.php?ref=home#/profile.php?id=503791384&ref=profile
May 7, 2009
My parents had a garage sale last weekend. It was a neighborhood thing. There were
14 other sales going on all at the same time.
I’m not quite sure why they wanted me there. I wasn’t really trying to sell a whole lot —
my old golf clubs, that’s about it. I spent most of my time upstairs trying to figure out
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why my dad’s WiFi wasn’t working. I’ve been thinking I need to spend more time over at
my parent’s house to help them clean and fix up their house. It makes sense to do it
now while I’m still here in Illinois and not working otherwise. Besides, I owe them A LOT
because of all their help over the past couple years.
My nausea seems to have gone away now for a while. However, I am going to need
some refills again real soon. But, I still have to somehow get this $1200 spenddown
thing taken care of, first.
Luckily, the court order from the hearing that was held last month, turned out to be a lot
more in favor than I was expecting. It said that I admitted going against the divorce
decree, which, by default, puts me in contempt of court, which means I could have been
sent immediately to jail. But, because of my extreme circumstances and my subsequent
explanation, he is being gracious with me and giving me some time to pay as I can. I’m
also not being forced (yet) to have to pay for my ex-wife’s attorney’s fees. —
I still remain sooooo perplexed by the hostility, TOTAL lack of trust, her lies, and the
corresponding cruelty. It’s like she has become blinded by her own anger and madness.
I shared a lot of my mixed and troublesome emotions with my friend, Chad yesterday on
the phone. I explained to him how the past year has been totally life-changing to me,
and that ALL I seriously care about anymore is being a Austin’s daddy. But, I’m being
blocked partly because of my own past transgressions, my health, and then also due to
her shunning me and withholding him from me as much as possible. I told him that I
seriously, seriously want to make peace somehow – since, as Christians (assuming that
she is), whether we’re divorced or not, we are both still brother and sister in Christ. I’m
sure God is looking down on this situation and just shaking his head at the ridiculousness
of it all — in the meantime, the real victim, Austin, is the innocent sufferer. (If not felt
immediately now, he soon will!) Shouldn’t we (i.e. she and I), be WAY more concerned
about the salvation of the lost, working together to raise our son the best we can given
the fact that she has chosen to give up on the marriage — (ooops! – did that sound like a
shot? I guess it was. OK, I take it back.)
My appeal here, and this goes out to any Christians still on this earth, we are called to
keep an eternal perspective . . . all the money, fame, and power that we strive so hard to
attain in this life is only just dust in the wind (that comes from Ephesians, not the rock
band, Kansas!). The kind of treasures that will get built up in heaven are made during
the times when my aunt and I were playing in the backyard with my cousin Connie’s
toddler’s the other day; and the time I’ve been spending putting a gift basket together
for my son. — The pain and suffering she is causing me now is doing far more eternal
damage than any temporal feelings of goodness she might gain.
During this time of basically “Relearning Life,” one of my favorite Psalms keeps coming
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back to me over and over, “Cease striving, and know that I am God.” I know it almost
sounds Buddhist, but there sure is a lot of wisdom in that. Many times, when I’m finding
myself getting caught up in the tornado (particularly when certain people are around me
or are on my mind), I remember that verse and find myself in the calm eye of the storm,
instead of the calamitous chaos surrounding it.
May 12, 2009
Because of the unusual but incredibly interesting story I have to tell, I have been
encouraged to write a book (which I’m doing), as well as appealing to several daytime
talk shows, including Oprah Winfrey and Ellen Degeneres. Since I want to raise
awareness for the growing phenomena of men who have been abused by their wives or
ex-wives, as well as fathers who are being alienated from their own children, I decided to
go ahead and share my stories with them as well as with other programs such as James
Dobson and Dr. Laura Schlessinger. I am also planning on writing to several newspapers
and news magazines.
I’m sure my story is interesting and worthy enough of being put on the air since the kind
of stories that Oprah is looking for, are a whole lot more common than my own. If
anyone is interested, I have posted the link to my submission below. It appeared first on
my Facebook account:
Steven W. Berg just submitted my bizarre story to Oprah and Ellen to see if they might
want me to appear on their shows to raise awareness for male victims of domestic abuse
and throwaway dads who LOVE their kids but are being alienated from them. See what I
submitted at the following link:
http://apps.facebook.com/wildfire_slates/503791384?tablet_id=58068&mode=0&
May 12, 2009
I just got back from an hour and a half long bike ride. I didn’t intend it to be that long,
but I would just get so tired and would have to make frequent stops. It was really pretty
discouraging. I thought the heart was stronger than that. I’m trying to get to the point
where I can live on my own again, but it looks like it might still take awhile.
(I think getting lost may have also contributed to the length of time I was gone 🙂
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May 13, 2009
This was a good productive day. I felt renewed surge of “git-er-dun” (OMG, did I really
just say that??? Sorry!) This is in spite of the fact that most of the news I had today was
not good.
I had been trying to rework a modification of my loan on my house in Burnsville, MN.
CitiMortgage and Freddie Mac came back with a decent offer, putting my interest rate at
4.25% fixed. But, the monthly PITI (Payment, Interest, Taxes, and Insurance), are just
going to be too high. I’d never be able to find a renter that would be willing to pay that
much for it. Plus, I found out that the condition is pretty bad and it would take a lot of
work to get the place back in shape. On top of that, I don’t really want to move down to
Burnsville again. For one thing, it’s too close to where my ex lives. There were some
privacy invasion and stalking issues I had to deal with last year that I had to report and
was almost able to get a restraining order for, (even though the judge accepted my
reasons for requesting the order for protection, I was simply too late.) — So, I’m
Finally, I know my anger, bitterness, and hurt comes through quite a bit in my writings
because of the divorce, but, the deep down truth is, I HONESTLY want to make peace
with all of those with whom I have a damaged relationship. This DOESN’T only include
Sara and her family, but also several of my family and friends — whom, I KNOW I used
and took advantage of. The shame runs deep, but I do rest more comfortably knowing
that God’s grace and forgiveness runs deeper. In the gift box I sent Austin last week, I
included a rather temperate note to Sara, inviting her, in a spirit of genuine
reconciliation, to establish a relationship where we can resolve our issues rather than
going to court. The contentious nature of this process has only fed my resentment
toward her. If only she had trusted me, I would have been able to be much more
cooperative and this would not have caused the financial destruction it has.
In any event, I am petitioning your prayers, that she might see my new heart and
genuine spirit that just wants to do the right thing. I’m desperate to be back with my
son. Since Christmas, my family and I have asked her a few times to send pictures of
him to us. It hasn’t happened. And, knowing her, it WON’T happen! (I’d have to get a
court order, or somehow con her attorney who controls Sara like a little puppet, to do
anything!) If I have to file a motion with the court in order to get something changed,
then that’s what I have to do. — Please pray for some compassion, understanding, and a
willingness to let down her defenses. (I am NOT EVER going to go away! Now that we
have Austin between us, I will never be satisfied until she and I can agree to SHARE
parenting responsibilities. I may be different than most divorced dads, but I will not be
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excluded from my son’s life; and since his life includes her side of the family, I won’t
allow them to shut me out. I will never give Austin a reason to think or believe that *I*
allowed my bitterness to stand in the way of his divorced parents from being friends.
Even though he will ALWAYS desire that we would get remarried, it probably will never
happen. Being that as it may, I see no reason, especially since we’re Christians, why we
can’t put aside our differences and work on being friends? Forgiveness may be too much
to ask for (even on my part), but, there are logs in both of our (sets) of eyes. — If I could
say something from my heart it would be, “Sara, as my sister in Christ and as the mother
of my child, I DO love you and believe that we could have been great FRIENDS! But, I’m
very hurt (yes, even “men” can feel emotional pain) and as long as you are distrustful of
me, I am forced to be distrustful and defensive toward you. The next move, honey, is
yours'”
(In World War II, the most feared of our enemies were those Japanese pilots who were
willing enough to sacrifice even thier own lives to support their cause. Whether directed
in the right place or not, this is certainly an honorable quality. —
I have been fighting, fighting, fighting with ALL odds against me. Lying there, totally
alone in the hospital, day after day after day, in a tangled mess of tubes and wires
preventing me from rolling over; always being attached to the wall; needing to call the
nurse just so I could go to the bathroom; not having enough energy to walk; being
forbidden to drink more than 1500 mg a day; having to have my guests wear sterile
smocks and masks because I caught some bacteria from the hospital; having to endure
several painful shots every day; dealing with incontinence; constant chest pain (being
afraid even to cough or sneeze); catheters; greasy, grimy hair; bloating; and finally
watching my once very in shape body reduced to a mere waif. Not only that, I was told
that the average life expectancy of a transplant recipient of my age was only 12 – 15
years. Every night, I cried myself to sleep, thinking about and missing my little boy.
Several times, I truly felt afraid for my life. Having to be airlifted from one hospital in
order to go to another was more than I could bear on October 15, 2008. It was my
SISTER who held my hand as I was being strapped up to a strange gurnee in the middle
of the night and wheeled down a stark, Spartan hallway leading out to a helicopter pad,
with a helicopter waiting JUST for me! — I remembered watching these helicopters taking
off and landing from my bedroom window when I was a little boy. I grew up in a house
that was only a little bit more than a mile down the road from the hospital. I don’t know
why I was so amazed by watching them at the time and I NEVER would have imagined
that I would be a passenger one day. But, now, for whatever reason, it was my turn,
and it scared me to death. I couldn’t help the tears from welling up as I was approaching
the exit door leading out to the helicopter. I confessed to Sue, my sister to whom I am
indebted to for my entire life, “I had no idea this was so serious!” — My skin
was completely yellowed from jaundice since both my liver and kidneys were failing;
my grossly enlarged and deformed heart was desperately struggling to even support
itself; and I was totally at the mercy of those taking care of me.
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For Sara to say today (which she did in her latest affidavit) that I have been deliberately
trying to undermine her and showing contempt upon the court while I’m not even sure if
I’m going to wake up the next day, is a kind of evil I cannot even begin to understand.
She then even had the nerve to ask the court to place me in contempt of court because I
hadn’t come through with paying her all the money I said I would prior to my 1) losing
my job and 2) getting as sick as I was. She has been trying to make it seem to the court
as if SHE is the victim in all this; calling her own plight a “disaster” and blaming it all on
me. It mystifies me how she thinks that SHE has suffered more than I have; and yet, she
does. The worst thing she has had to endure is having to go back to work on a full time
basis (whereas, I haven’t worked AT ALL in over a year!).
PLEASE dear God! If you are truly, truly there, please guide us! I care so deeply for my
son, whom I haven’t even seen in over a year. I thank you that he is still too young to
remember the immature hostility that exists between his mother and me, but I pray
that each of our hearts would be changed, that we would acknowledge that even though
we cannot understand or relate to the kind of temptation that the other faces, they MAY
still be worthy of our trust.
God, I understand now why it is that you hate divorce. It is not just wrong, it is
unnatural. In fact, it is wrong, precisely because it IS unnatural.
I was ALL ALONE. Where was my wife and my little boy to bring me flowers and gifts and
to smuggle in Starbuck’s or Kentucky Fried Chicken; to stroke my hair and to tell me how
much she loved me? To have my son there, climb up on my hospital bed and give his
daddy a hug? Was I REALLY that much of criminal? Did I REALLY deserve this? — What I
got instead (in my own hospital room) was, a cold letter from a lawyer, representing
someone whom I proposed marriage to 5 years earlier in the middle of Times Square
with a $12,000 ring, demanding that I provide my life insurance information. — As
horrible as I may have been to her, I NEVER deliberately meant to hurt her and I have
apologized for everything.
Thank GOD, my real judge is God Himself! Satan, the Accuser, the one pointing his evil
finger at me and trying to convince God that I deserve to be punished and to suffer
eternally, (much like how I’m feeling treated by Sara) has been defeated. Thank God, I
can rest peacefully in the arms of Christ, my Redeemer, who has taken upon HIMSELF,
my own sin and the consequences of it. So long as I rest under His wing, and trust Him
to fight this battle for me, I am protected. I have nothing to fear, nothing to worry
about. I must entrust the protection of my son into His care.
I have been spending a lot of time 3 days a week with my cousin’s twins, Ross and
Reed. They are a few months younger than my son is. I’m really beginning to enjoy
them, even though I’m not their father. I was watching today, as little Ross (who tends
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to be the more aggressive and moody of the two) was calmly nestling himself in the
comfort of his mommy who was stroking his hair. He wasn’t feeling well, but he felt right
at home in her lap. I was holding back SO many of my own tears, as I couldn’t resist
thinking that that’s what I should be doing with my own child.
Ross and Reed are quickly becoming more and more verbal and in touch with the world
around them. They are both EXTREMELY observant and are learning tons of new words
every day. They are totally intrigued with the world around them. They are really a lot
like parrots in that they readily pick up words and phrases they hear. The difference,
though, is that they are able to apply context and meaning to these words and phrases.
For instance, pretty much without fail, when Connie arrives to pick up her boys, and they
have had their diapers changed and the shoe are finally on and tied, Ross will begin
saying repeatedly, “Goodbye! Thank you!” over and over and over again! It’s the
cutest, laughable thing in the world. And then there’s Reed, the one with the chesire cat
smile that makes you wanna ask, “Ok, what did you do?” He seems to really like me.
When he sees me, he gives me that big smile and says, “Hi Steve!” I can’t help but give
him a big grin in return!
Two days ago, when it was supposed to be nap time and they were supposed to be in
their cribs, (which Reed has figured out how to climb out of), I was sitting on the bed in
my room Facebooking or something, I glanced up and saw a little blond head with a big
smile on it peering at me from the doorway. I just couldn’t be mad. In fact, I played
along and whispered back at him with big, alarming eyes, “You better get back to bed”
as I waved my hand back toward the bedroom. He disappeared only to show up one
more time.
I’ve noticed something else, and, I’m not sure if this is a difference between men and
women or not, but, I’ve noticed that I have more of a tendency to allow the child to
struggle a little bit more in order to achieve his objective than my aunt (i.e. their
grandmother) does. For instance, it was time to go home, but Reed had left his blanket
in the bedroom where they were sleeping for thier nap. My tendency is to encourage
autonomy as much as possible. (I think I do have a teacher’s instinct.) I was sitting at
the dining table next to the gate that led to the hallway going towards the bedroom.
Instead of crying and whining forcing the rest of us to try and figure out what he wanted,
he came right up to the gate, looked and me and said the word “blanky” Instantly, I
knew what the problem was. I got up, opened the gate, and told him to go and get it. I
could tell that he was expecting ME to go into the room and get it FOR him, probably
something his mom and grandma would have done. But, I wouldn’t move until he did.
He walked down the hallway toward the appropriate room and found that the door was
closed. I said, “Uh oh! What’s the matter? The door is closed! The door is closed!”
Reed repeated exactly what I said, “The door is closed!” I waited to see if he knew how
to turn the knob on his own. He didn’t, or at least, was wanting to be respectful of me
and my authority to open the door myself. I went ahead and opened the door and
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allowed him to enter the room on his own. He saw the blanky on the opposite side of the
bed; he looked up at me smiling, and pointed right at it, again, expecting me to reach
over and grab it for him since he couldn’t do it on his own. However, I noticed that it was
on the edge of the opposite side of the bed and he could easily reach it if he were over
there. So, I told him, “Go around the bed! Go around the bed!” using my hand and
finger to point the route he would need to take in order to get over to the other side. He
seemed confused at first, but quickly picked up on it. He got over to the other side,
grabbed his blanky and I praised him with a huge smile on my own face! He looked back
at me with his own smile that said to me he was really proud of himself.
As much as I’m beginning to love these two little boys, I’m also feeling a HUGE sense of
loss regarding my own son. It’s maddening.
(For anyone that might be interested, here’s a link to another piece I wrote regarding the
significance of this date two years ago, which was Mother’s Day 2007) I’m warning,
though, it’s entirely written about my ex-wife.
http://apps.facebook.com/wildfire_slates/503791384?tablet_id=58120&
May 17, 2009
Yesterday, I moved back to my parents’ house, at least for a week while my aunt and
uncle are on vacation. They took their RV out camping. They didn’t feel that it was
appropriate for me to remain in the house by myself, which, I guess I can understand. (I
suppose the last thing anyone would want is to come home from a nice, relaxing
vacation only to come home to a dead nephew lying in the middle of the family
room floor — I imagine it would take more than a vacuum cleaner to clean up that
mess!)
Once I arrived, I spent a few hours cleaning up the room that I would be staying in. I
spent a lot of time this evening giving the downstairs bathroom a real good cleaning
too. My mom has been pretty depressed and the house really shows it. My dad, on the
other hand, doesn’t really care and as a pack-rat, is more concerned about things being
thrown out rather than the house being clean. However, . . . (read more here here)
May 19, 2009
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I know I have a hard time letting go of things. It’s a Berg family trait. But, on the other
hand, I’m pretty ambitious, which also creates some interesting tension.
I’m gradually getting stronger and stronger. I’m able to lift 20lb weights now without too
much trouble. But, ironically, it’s been the strengthening of my new heart that’s been
most difficult. How funny, this whole experience has taught me that all forms of physical
exercise is some form of strength training. The heart is a muscle, and so, even aerobic
exercise qualifies.
I guess enough time has gone by that I should be able to attempt to find who my donor
was. I can have the hospital contact the family of whoever the person was who gave me
what no amount of
May 21, 2009
I know I have some updates to provide — I’m just in the middle of a swell of plates that I
have to either keep spinning or slowly take down without the rest of them crashing
around me.
In the meantime, here’s some new pics of Austin and us during his first couple months
that I posted on Facebook and this new cool thing I found called “photobucket”
http://s699.photobucket.com/albums/vv358/stevenwberg/Austin%20-%20The%20Early%
20Months/
(I’ve really been getting into digital scrapbooking and scanning in all of our family
pictures! — And, PLEASE be praying that Sara (my ex) would send me some pictures of
our son Austin. I don’t remember the last time I’d even seen my own boy, but it’s been
at least before April 21, 2008. I’ve asked her nice enough, but, I’m sure she’ll ignore it.)
I was thinking about all of you who have been so gracious in your giving and prayers and
support for me through all of this! I hope I haven’t offended anyone in my rants and
raves! I am writing a book about this whole unique experience and am going to be
posting my chapter drafts and ideas either on my Facebook account or another journal
writing site I found called “LiveJournal” I’ll make it public or semi-public to allow others
to read and provide feedback.
God bless!
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– Steve
May 24, 2009
I think I’ve decided that I’m going to stay here at my parents’ place until I can move back
to Minnesota. I’ve got a much bigger room here, allowing me to have a desk to do all my
computer stuff. Plus, I can tell it’s making my mom really happy, too.
My dad has been doing a lot of talking about getting this 4506 business up and running,
for doing income verification for mortgage lenders. He really thinks it’s going to take
off. However, it seems to me that A LOT is riding on me to get things set up! I keep
getting pounded about what this website should have and everything. I’m doing it for
him, but I’m worried about how he wants to just jump into it without doing any proper
planning or projecting. I’ve realized that he doesn’t see the equal importance of FORM
vs. FUNCTION. He’s all about enabling the function, but thinks that “form” (i.e. the
nfrastructure, clean and organized office space, well-defined processes, etc.) That kind
of surprises me seeing as how he used to be a fairly successful business man himself.
But, I’ve been going ahead and cleaning up the place and getting things organized on
my own. Not just for him, but also for my mom’s sake. Because of my dad’s pack-rat
nature, it’s been difficult to keep up with him, and so the condition of the house has been
in a slow decline. I’ve gone ahead and cleaned up the guest bedroom, got down on my
hands and knees and scrubbed the bathroom downstairs and started doing the same
thing to the bathroom on the second floor of the house. I can see that I have inspired my
mom a bit, too. She’s gotten a great start on cleaning up the kitchen.
It really feels good to be able to give back to my parents what I had taken from them.
My disastrous marriage and divorce cost THEM a lot of money, too! I can’t BELIEVE how
expensive lawyers are! I begged what’s-her-name to not take any legal action, but, she
insisted.
(Read more here . . . )
May 24, 2009
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I keep forgetting to mention it, but I wanted to thank all of you who have contributed
money to my cause and a special thank you to Kristin Benda and Annelle Moyer and
others for their fantastic efforts in organizing the benefit they held for me back in
January!
Your warmth and generosity was overwhelming!
I don’t even know all of whom I have to thank!
God bless you all! And, as always, please continue to pray for me.
I’m finally physically able to start putting my life together. It’s hard not to think back to
what I had and lost, and toward an unknown future.
But, somehow, someway, I am determined to keep going!
This is going to be my last entry on CaringBridge for awhile, since this site has largely
been designed for those who are critically ill; which, (praise God!) is definitely a major
milestone that I have overcome!
If you wish to continue following my blogs, I have finally found a service I like, called
wordpress.
My new blog address is:
http://steveberg.wordpress.com
May 26, 2009
I think something I said last week may have been taken the wrong way and been in poor
taste on my part. (I sometimes actually forget that other people are actually reading my
personal journal entries).
When I mentioned that I could see my aunt and uncle’s point that they didn’t want me to
stick around their house by myself while they were out of town because something could
happen to me given my condition, I was trying to be lighthearted by saying that they
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didn’t want to come home and find me dead when they came back. I apologize if that
was taken the wrong way. It certainly was not my intention.
May 29, 2009
New journal has been posted at:
http://steveberg.wordpress.com/
July 7, 2009
Hello everyone!
I’m definitely starting to feel better and better. I’m glad it’s summer, but the heat and
humidity wear me down quite a bit. I rarely feel sick anymore, but my heart still races
even after trying to do a slow jog.
Also, I’ve been a bit disappointed with my slow weight gain. I just haven’t been able to
regain the muscle mass I used to have. The meds still make me shaky and I often need
help with delicate tasks (like pouring, writing, picking up small items, dialing, etc.)
As I predicted, I never heard anything from my son on Father’s Day. His third birthday
will be coming up in a couple weeks. Please pray that I’ll somehow be able to have
contact with him on that day.
Finally, I know I’ve said this over and over again, but I know that I owe so many people
SO much — much, much more than I could ever repay. Over the next few weeks, I hope
to write a series of tributes to everyone who has given me pieces of their hearts so that I
could receive a whole new one!
God Bless all!
– Steve
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July 16, 2009
My parents and I were up at 4:30 this morning and were on the road by 5:00 in order to
drive me into downtown Chicago for one my routinely scheduled biopsies. We got there
pretty late today, 7:30, instead of 6:30. (My father doesn’t like taking the tollway in, so
we always end up having to take these very odd back roads! — Not too long ago, I used
to think that gave me grounds to complain, but, it really doesn’t. I should just remain
grateful and keep my stupid mouth shut; which is just what I did.
The stranger in the holding area next to mine, was a man who just HAD his transplant. I
was really touched by the brief conversation between him and the nurse: “What is your
birthdate, Mr. X?” “I have TWO birthdays! One on XX/XX 1939, and the other one on
May 8 [this year]. I thank God every morning and every night!”
How DARE I complain — about anything!
Ironically, as I’m writing this, I’m overhearing a helicopter overhead. There’s only one
reason you really ever hear helicopters flying over this area of Rockford, it’s delivering a
patient either to or from St. Anthony’s hospital. It was about this time of night back one
night in October, that I was a passenger on one of those flights. I’ll NEVER forget how
hard the sobering reality hit me that night – just how serious my situation was. As a little
kid, I used to stand on my bed, staring out my window, watching in amazement, the
comings and goings of those helicopters. I NEVER imagined I’d be in one of them myself.
It was that subtle reminder, that I took as a message from God. At THAT moment, ALL
other concerns melted away — my unemployment, my legal problems, my financial
problems, even concerns about my child.
I literally, had to let it all go, and for once in my life, just . . . be.
July 26, 2009
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Last Wednesday was Austin’s third birthday. I wasn’t sure how complicated/difficult it
would be for me (legally) to call my son. Since my attorney was on vacation, I contacted
the paralegal assigned to [my ex]’s case, Jenny and asked what I should do. She
contacted [my ex] asking her how she wanted to respond.
A few hours later, I got an email directly from [my ex] saying that I could call at around
5:00. But, by the time I was able to retrieve her message, it was already too late. So, I
sent her a message back asking if we could call the next day. She wrote back and said
that would be fine as well. So, on Thursday, at 5:00pm, my mom and I called Austin.
She still has the same cell phone number she has ALWAYS had ever since I met her in
2002. My mom put the phone on speakerphone, as did [my ex]. I could hear Austin in
the background. He sounded so much more lucid than when I saw him last. He was
being coached by his mom but I was absolutely STUNNED when I heard his little voice
clearly and loudly say, “Hi Daddy!” — An instant wave of responsibility brushed over me
as I thought, “Daddy who? ME????” — Yes, of course, me! The shock of hearing
someone actually calling me that was a little overwhelming for a second or two.
When I asked him how old he was, he yelled out, “THREE!!!” I was so impressed to hear
him to be able to correctly pronounce the “th” sound.
In the background, I could hear him say the word “Movie” — [my ex] gently corrected him
and said, “No hon, we’re going to finish our phone call first.” My reaction to that was
that it sounded like there’s a trust between her and him, and that she’s doing a good job
being his mother. He also sounded very happy – which, I guess, in the end, is more
important than anything else.
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In that vein, I realize I need to make sure i don’t do anything that might directly or
indirectly hurt Austin. I’ve got some thinking to do about that.
Also, we finally got a picture. (See below here). As I told [my ex], had I been 37 years
younger, Austin and I would be identical twins!.
July 30, 2009
I’ve recently been told that many of my posts and journal entries were just far too
revealing regarding my ex-wife and our marriage. I admit, I never handled the whole
thing well, and I was furious about how unfairly treated I felt. Journal writing is
something I do naturally as I’ve kept one since 5th grade! It has been one of the most
therapeutic things for me to do. Instead of actually taking out their anger on the person
they feel wronged by, some people punch their fist into a pillow, I write.
Obviously, I should have kept most of it private, but, this has been such a big part of my
life, so intertwined with everything else. I’ll be sure to censor and temper past and future
posts.
September 22, 2009
I can’t make it to my scheduled outpatient surgery in Chicago on Thursday because the
Minnesota courts won’t grant me a continuance regarding the false allegations of identity
theft that I’m facing. Please pray for me . . .
October 1, 2009
My parents and I had to wake up very early this morning in order to make it to my
scheduled heart biopsy at Northwestern hospital in downtown Chicago.
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Fortunately, I was still very tired and was able to sleep most of the way to the hospital.
My dad, who would rather whittle away minutes from his ultimate Time of Death by
taking all of the side roads into Chicago rather than paying a couple bucks by taking the
tollway, was able to get us to the front door of the Feinberg Pavillion shortly after 7:00
am.
My mom and I jumped on the elevator to the eighth floor where I was greeted by name
by the secretary there and given my typical blue placard with the letters, “H1″ on it.
Holding room 1 was my typical spot during these outpatient procedures.
I was met with some new nurses this time. One was a really short, old
Chinese woman, extremely pleasant and nice, (nevertheless, I’m sure she’d be a shoe
in at a casting call for a rice field worker). She had the hardest time with my veins,
fumbling around with needles in my left arm, while I just lay there gritting my teeth,
grabbing the bedsheets, and trying not to squirm. After what felt like an eternity, she
asked, “Does it hurt?” (For the life of me, I still can’t figure out what clued her in.) “Very
much, so, YES!!” — She graciously apologized and said she would let me rest and let
someone else give it a try. It was obvious that today was just not her day when she just
stood there for several minutes scratching her head in wonderment while trying to shove
a thermometer down my throat. It was obvious she was not getting the reading she
wanted, and then I snickered and just waited for her to pull the thing back out before
telling her, “You just put an ice cube in my mouth and then stuck the thermometer there
2 seconds later.” She laughed embarrassingly as she realized why my temperature was
only 95 degrees.
The nurses from the lab came in and I could tell they were in a rush. After getting
myself settled on the skinny, cold operating table, they were able to get an IV fairly
easily into my right arm, and get a more accurate temperature reading.
Per my request at every one of these procedures, I was sedated throughout the whole
thing.
After it was all over, Susan Tafini, (my new nurse practitioner), came into my curtain
cubicle and started asking me about my meds and such. She said that I needed to lay
off some of the steroids since my white blood cell count was TOO low, meaning, I’m very
susceptible to infection. I also had a high percentage of potassium (where the heck I
could be getting too much potassium is beyond me, — OOOH Shoot! My banana just
broke off onto my keyboard, brb.)
My echocardiogram, for some reason, occurred much later than usual. At 11:30, the guy
peeked in and said he’d be back in half an hour to take me. Starving, I instantly called
my mom and asked her to go down to the cafeteria to get me something hot to eat. (It
was either that or have one of the dull sandwich’s the hospital serves.) My wonderful,
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dutiful mother delivered the perfect little lunch to tied me over for a couple hours.
The echo guy told me that my heart was actually pumping better than it should (the
ejection fraction rate was about 70%), which meant that I was basically dehydrated. As
he put it, “My heart was thirsty.”
I could tell it was finally October. The weather was cold, wet, and dreary — I loved it!
Thank God for another day on my second lease on life!
December 25, 2009
It’s December 25, 2009. The second Christmas I’ve had with the second-best gift I’ve
ever received. Next to my son, the gift of a second chance at life is something I am
eternally grateful for!
My health has been improving remarkably, but my stress levels lately have been difficult
to manage. With the cold weather and snow, I have to come up with creative solutions to
meet the demands of my life.
Against the better judgment of most of my family members and the Medical Staff at
Northwestern, I have been working toward transitioning back to Minnesota so that I can
spend time with my son, Austin — one hour on Saturday’s.
I was planning on being with him again tomorrow (Saturday, the 26th), but when I found
out that my Illinois Medicaid Insurance was going to be terminated at the end of the year
and with the predicted onslaught of bad weather, I had to make a very tough decision
and made emergency plans to come back down to Illinois. Because of the insurance
thing, I scheduled my one-year biopsy check-up for Tuesday, 12/29 (Sue’s birthday).
I had baked a bunch of cookies and what not to give to Austin and his other family, but,
he will just have to have a delayed Christmas with his Daddy. — I’m sure he won’t fuss
about having multiple Christmases anyway!
Since I’ve been able to spend time with him again, and I see how wonderful he is, how
well he’s being taken care of, I’ve had another change of heart (HA HA!), towards my exwife
and her family. In light of the Christmas spirit, and the gift of forgiveness that Christ
is offering to all of us by coming to earth in the first place, I am choosing to forgive and
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asking to be forgiven.
Although I desperately wish I could be with my son on this day, the knowledge that he is
happy and loved, is good enough.
Merry Christmas everyone!
January 6, 2010
Because of last week’s bad biopsy results, I had to make another appearance at
Northwestern Hospital for ANOTHER biospy. I also scheduled a few other appointments
that I was expected to get taken care of.
6:00 – My good friend, Dave Westergaard came into the room that he had so graciously
allowed me to sleep in for the night. He lives in Highland Park, IL which was only a 20
minute drive to the hospital! Usually, I have to rely on my family in Rockford to drive
me. But, since it’s a good 1.5 or 2 hour drive, we have to get up extra early in order to
get to the cath lab between 6:30 and 7:00am.
7:03am – Dave let me off at the curb on 201 Huron Street at the door that I usually go
through, and I dutifully went straight up to the 8th floor. The check-in nurse, whose desk
is so strategically placed right next to the elevator bank so that you can’t avoid you,
recognized me immediately! A very, very cheery woman, the first thing she said to me
was, “Where’s your mom?” (My mom is pretty popular around that place too.)
I had a brand new nurse assigned to me this time, Denise. She was very, very friendly,
but didn’t realize how familiar I was the place, the people, and the procedures. (I even
informed her that she forgot to ask me when the last time I ate was!)
I brought my laptop with me, but just felt so, so drained that I just didn’t have the energy
to break it out. The demands that other people have been placing on me have just been
enormous! It seems as though everywhere I turn, someone is trying to insert a spigot
into any available spot on my body. It’s much like the nurses who have had to scour my
arms to find a spot on a vein that fights the needle. I had to force myself to relax, and to
stop thinking/worrying about the stressors that constantly plague me. I’ve been finding
that my life is nothing but a series of crises, one, two, or three at a time connected by
life-squeezing wormholes.
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So, I just slept until it was time for the biopsy.
9:30 – Biopsy. I was escorted into the sub-zero temperature cath lab, stepped right up
onto the super skinny table, stripped naked by 2 gorgeous nurses and then sedated. The
next thing I knew, I was back in my parking spot in the holding area.
12:55 – I had to race over to the 626 building to meet with Dr. Stoser from the infectious
disease department. Evidently, my donor had been exposed to a dangerous virus called
CMV, but I had not. Consequently, I have been taking an anti-viral medicine called
Valcyte (which costs nearly $3000 per bottle!). They would like me to discontinue me
from it, but I have to very closely monitor my health and get lab work done every two
weeks.
2:00pm – I had to go over to the Galter pavilion in order to have a procedure done that I
never had done before. It was called a “DEXA Scan” — the purpose of which was to
measure my bone density. (Prednisone, one of the powerful steriods I’m on, has a lot of
beneficial effects, but also, a lot of negative ones. Although it’s helping to prevent mst y
heart from being rejected, it also likes to erode my bones.)
Luckily, I was able to con my father to drive in to the city to pick me up. He left at 2:30
and didn’t get there until 5:30. I just sat in Au Bon Pain restaurant on the second floor
and then in the lobby getting some work done.
March 22, 2010
Today is my 41st birthday.
On Saturday, I spent my once every other week with my son, Austin. We really had a
fantastic time. I brought over the movie Ice Age, and while we were watching, he would
laugh hysterically. It really brought a smile to my face!
We played with the Connect 4 game, he hit the Wac-a-Mole tower a few times, he told
me when he had to go potty, and we chased each other through the hallways. He loved
it.
The social worker who has been sitting in on our sessions, looked so sad as she was
watching us together. She sees how well Austin and I get along, how much I love him,
and how much he respects me. But, I can already see a bit of a discipline problem. He
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doesn’t immediately obey when you tell him to do something, such as getting ready
when it’s time to go.
We were watching “Ice Age” and our time was almost up. His eyes were glued to the TV,
and I told him he needed to put the Connect Four pieces back into the box faster or else I
would need to turn the TV off. I framed it in terms of it being HIS choice. That seemed to
do the trick.
July 13, 2010
Dear Friends and Family,
I would ask you to still keep me in your prayers. I’ve been so busy trying to rebuild a new
life for myself and just haven’t had the time to keep updating my journal. But, in a
nutshell, my current status is:
1) I’m trying to do a short-sale on my house with one of my current renters who would
later sell half of it back to me.
2) I would continue to rent out the rooms separately, but I do need to find another place
to live before winter comes. It may still take some time for me to get my license, and
Burnsville is just too far from Minneapolis where most of the job opportunities exist.
There are also several out in the western suburbs, too. I really loved living out in Eden
Prairie, and would love to find a rent-to-own condo or townhouse if possible.
3) I have been getting SEVERAL leads and interview requests because of my IT/web
development skills (including 3 job offers), but they have all fallen through because I
can’t pass a background check. (My ex accused me of identity theft because when she
abandoned our marital home, she and I both forgot to discontinue the automatic
payments for a utility bill that was set up on one of HER accounts. Even though I tried to
pay her restitution, she refused and chose to pursue legal action which resulted in my
getting a misdemeanor theft charge on my record. This has been preventing me from
passing a background check at the various jobs I’ve been interviewing for. Luckily, I
contacted some attorneys who are experts at expunging records. Because this was a
totally isolated incident, and because the overall consequences are causing more harm
to both me and the community, it’s likely that I will be able to have this conviction
expunged. The problems, though, are that it would cost me $1200, and it would take a
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few months. It would take me some time to collect that much.
4) I believe I would be a very good candidate for the show, Extreme Makeover, Home
Edition. I’m sure that, because of my dire situation, my application would be surely
considered!! The problem HERE, though, is that time is really of the essence. I should
have done this several months ago. The application requires the making of a video tape,
pictures, and filling out the application. It’s just a lot of work and time that I don’t see
myself having the time for. It would be great if I could find someone to help me out.
Thanks everyone, for all your love and support! I’m hanging in there and I REFUSE to
give up!!
God bless,
Steven
November 10, 2010
Wednesday, November 10, 2010
Today is my second birthday, the day when two years ago, I was miraculously given a
second chance at life. So, needless to say, I have been feeling pretty nostalgic and
humbled.
I’m in a much different place now than I was 2 years ago, but only in some ways.
Physically, I have been just fine, in fact, almost too perfect. The only thing I have to
complain about are the side effects caused by my medications, which include incessant
shaking and insomnia.
When I moved back here to Minnesota, I discovered I still had some hard lessons to
learn. I was still too trusting of people, and I allowed people to move into my house who I
knew would have trouble paying.
[PLEASE CHECK IN LATER FOR FURTHER UPDATES]
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November 12, 2010
Today was November 12th. It was at some point in the afternoon two years ago today
that I finally started waking up. I remember opening my eyes and seeing my cousins,
Gitta and Christiana and my mom sitting just to my left. I had no idea that I had been
asleep for over 27 hours and that I had missed an entire day! Next to the feeling of
having a giant tube shoved down my throat, three smaller tubes coming out of my
stomach (I’m still not sure what those were for), a dozen IV tubes stuck into my arms,
and an oxygen mask on my nose, the disorientation in time was one of the weirdest
things I think I’d ever experienced!
Since I have moved to my new place (which I’m LOVING!!), I’m again having some
significant financial difficulties. My moving expenses, and my bills are really stacking up
again. I hate asking for charity, but fortunately the church I’ve started going to regularly
has what’s called a “Benevolence Ministry” — which means people who attend the church
can apply for emergency financial assistance. If it’s in God’s will that I should receive
such a blessing, I will be forever thankful; if not, then so be it!
Since my re-commitment to God, and getting rid of a lot of bitterness, anger, and
negative people in my life, I have been noticing God’s grace being shown through the
kindness and generosity of others who have been my genuine heroes. (Click here to see
who).
Other prayer requests I have include:
1) Even though I have been getting a ton of calls and emails from job recruiters because
I have some highly specialized computer skills that happen to be in high demand right
now, (this has been going on for over a year now!), nothing ever seems to pan out. I
have recently been submitted to about 6 different very big companies, (including Wells
Fargo, UnitedHealth Group, St. Jude’s Medical, a giant law firm in downtown
Minneapolis). Please pray that something would pan out here very soon!
2) My primary reason for returning back to Minnesota has been for the sake of my son,
Austin. So far, I have only been able to visit with him once every other week at a place
where our time has to be supervised. I am finally moving into a more stable position
where he and I can spend more time together. I have moved to a place that is closer to
his house, and I’m hoping that sometime next year I will be able to pick him up and bring
him over to MY house! (I just can’t wait!!)
3) Winter is coming (in fact, tonight and tomorrow we are under a big winter storm
warning and could get up to 7 inches of snow!). This is usually the toughest time of year
for me as it becomes extremely difficult to get around. Fortunately, since I’m in a much
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more centralized location, it shouldn’t be as bad as last year!
4) I still haven’t moved everything over from my other place yet. I only have a few things
left, but some of them are very large and/or heavy! I’m still not sure how I’m going to get
them moved over. My new place is a quite a bit smaller than my old house, and I’m not
sure if I have enough room. I’d like to sell a lot of it, but, I just don’t have much time!
(This includes a 36″ tube TV that is extremely heavy, a refrigerator size freezer, car tires,
etc.)
That’s about it for now! Thanks and God bless all of you who are still reading my
CaringBridge blog.
January 5, 2011
A brand new year is here and, as one of my former classmates from Trinity College
reminded me through her Facebook status, this is the 20th anniversary of our
graduation. (Unbelievable!)
Tomorrow, I am scheduled for my annual heart biopsy at Northwestern. My friend, Dan,
is going to pick me up at the bus station, (I’m taking the Greyhound bus).
Please pray for safe travels, and a good report!
Stay tuned for more . . .
January 7, 2011
Well, I arrived yesterday in Chicago, with the full intention of getting my annual heart
biopsy. This one is special because usually they just scrape the left side of the heart (the
left ventricle), but whenever I have to go for one of these, they want to check everything
out.
Well, alas, the whole thing was a bust (but, not necessarily not worth it, though!). As it
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turns out, my current insurance (a Minnesota state funded program called Minnesota
Care, which is NOT the same as Minnesota Medicaid, like I thought it was), only covers
costs for procedures conducted in the state of MN. Since the last time I checked,
Minnesota has not yet conquered Illinois (and, despite the rumblings I’ve heard, has not
even ATTEMPTED to do so), any medical procedures I have performed outside of
Minnesota will NOT be covered!
Fortunately, however, I have also been approved to receive MEDICARE! which will cover
me on a national basis, which means I can go ANYWHERE within the country to receive
medical attention.
I know the obvious question is, “Why can’t you just have these biopsies performed in the
state where you live????” Excellent question! The truth is, I have so much trust and
respect for Northwestern and the doctors and nurses who have been working with me for
so long and so intimately, that, I don’t think I could even imagine going anywhere else. I
guess, if I were needing continued care for something less serious or much more
common, I might not care as much.
In any event, I have rescheduled this biopsy for Feb. 1, and have PROMISED that under
no circumstances will I miss it!
Thanks again everyone, for your continued prayers and support. God bless all of you!
Here’s to a Happy New Year, and to New Beginnings!
February 3, 2011
Yesterday, I made a very serious honest attempt to make it down to Chicago for annual
biopsy. I pain $30 to take a cab to the Greyhound bus station in sunny, clear skies
downtown Minneapolis. I was there in plenty of time to take the 1:10 scheduled bus to
Chicago, only to find out as soon as I entered the terminal, “All buses heading east or
south are canceled” Along with the extra 100 pounds of stuff I was carrying with me, my
jaw dropped to the floor in total shock.
This was now the THIRD time my annual visit was either canceled or rescheduled. As
anyone who is currently NOT in a vegetative state or hooked on “Family Guy” knows,
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blizzards all across the LOWER midwest dumped thousands of pounds of global warming
and ice all over the place. MY poor aunt, who only lives a few miles from her office in
Rockford, IL, had to spend the night at work! (Granted, this is the same person who
would have looked online and paid for a SNOW PLOW service to take her TO work HOURS
ahead of time once the snow had buried her house twice over, but, still, it’s the truth!)
What’s even MORE frustrating is that I had been selected to volunteer in a research
study that Northwestern is currently conducting to see if a more non-invasive, more
efficient method of collecting the same results using an MRI could be obtained. They
wanted to do an MRI and then compare the results with the traditional biopsy results. I
was really excited about it, too!
A . . . N . . . Y . . . W . . . A . . . Y . . . S……………. I found out that EVEN NORTHWESTERN
had canceled all scheduled appointments.
I FINALLY resigned myself to accepting the fact that I need to transfer my care here to
Minnesota. I’m finally on MEDICARE, so, it doesn’t matter WHERE I go, so, I have asked
Dr. Cotts, (my doctor in Chicago) for a referral to some cardiology specialist here in
Minneapolis!
All humor aside, I AM seriously concerned to find out how my new heart is doing. So,
PLEASE do be praying that this whole process can be expedited as soon as possible!
“God Bless us everyone!”
– Steven
March 26, 2011
I posted this on my Facebook page the day after my birthday, which was also the day after I finally was able to get my annual right and left
biopsy taken care of at Northwestern Hospital in Chicago!
Now, I’m on my way back to fun in the sun Minnesota because tomorow I get to spend my bi-weekly 2 hours with Austin (my son).
Click on the link below to view the post:
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http://www.facebook.com/swberg/posts/10150141815496385
April 1, 2011
OK, ok, ok, I’ve done it! I wrote a letter to my heart donor’s family. I haven’t sent it to the
heart failure/transplant team at Northwestern yet, because, I’d like to get everyone
else’s opinion first. But, CaringBridge isn’t really a blog where other people can submit
comments, so please, go and visit my WordPress blog to submit your own comments.
http://steveberg.wordpress.com/2011/04/01/my-letter-to-my-heart-donors-family/
Thanks everyone and God Bless!
– Steven Berg
September 2, 2011
In my attempts to find a place to live somewhere in or close to Minneapolis, I have been
forced to move to my parents’ place in Rockford, Illinois at least for the summer.
I have been traveling back and forth from Illinois to Minnesota every other week in order
to visit with my son. Although I have a totally perfect record so far this year (haven’t
missed a SINGLE scheduled session), the travel back and forth (mostly using some sort
of mangled concoction of the MegaBus, Van Galder, and the very rarely used
Greyhound), has become a daunting and expensive ordeal!
OH, and this has become ESPECIALLY true since I broke my heel on July 3 in Minneapolis
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have been hobbling around on crutches. Luckily, the heel is healing nicely, despite my
concerns after last week’s visit there because I was experiencing unusually extra
amounts of pain.
As far as my heart has been concerned, other than making sure that I have a sufficient
supply of and daily discipline to take the pills I need to take.
Feel free to visit my FaceBook page, www.facebook.com/swberg to see recent pictures of
Austin, my 5-yr-old son.
God bless,
Steve
3 Years and Still Growing Stronger
November 11, 2011
This Veteran’s Day, 11/11/11 marks the third anniversary of my heart transplant, and
once again, I have to report, that I feel better and better every day! It’s amazing how
these anti-rejection meds have been able to keep me alive!
My next scheduled annual left and right biopsy is set for next Friday, but not in Chicago
as usual, but up in Minnesota at the University, Fairview Hospital. I’m a little nervous
because it will be a whole new experience with a whole new staff.
My mom and I were talking last night, and I learned some new and interesting
information about certain events that occurred in the hospital in Rockford, but I’ll have to
add those details later on today!
Exact dates on this whole ordeal have always been pretty fuzzy for me, since I spent a
LOT of time either drugged up on morphine, or coming out of powerful anesthesia. As I
have mentioned previously, I spent several jaunts of time in 4 different hospitals. The
first one was HCMC (Hennepin County Medical Center) in Minnesota, but, this was not a
facility qualified enough to treat patients in the advanced stages of heart failure like I
was.
Also, the fact that I was unemployed and uninsured, made my situation 10 times worse!
My parents picked me up from Minneapolis, drove me down to my hometown of
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Rockford, IL. When the meds I was given at HCMC weren’t working, I was taken over to
St. Anthony Hospital
“Just let him go”
November 12, 2011
I realized i forgot to finish my story from yesterday!
So, anyway, it was at St. Anthony’s where my family and doctors were desperately trying
to find me a facitilty able and willing to take an uninsured patient.
The new information I found out about were
1) I was scheduled to be transported to the University of Wisconsin in Madison where this
hospital usually sends transplant patients. But just a couple hours after before I was
going to be strapped into a helicopter, the hospital coordinator in Madison called after
finding out that I wasn’t insured, and cancelled everything.
2) Shrotly afterwards, I’m not sure how shortly afterwards, but when my mom and sister
were pulled into a consultation room and told that they didn’t expect me to last more
than a couple days, the cardiologist also said to them, “Just let him go.”
When she told me that, my new heart practically stopped again.
<gulp>
3rd Annual Biopsy
November 18, 2011
Today I had my third annual heart biopsy where they not only scrape tissue out of my
left ventricle, but also from the right. This is an all day outpatient surgical procedure,
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which I have historically had performed at Northwestern Memorial Hospital in downtown
Chicago. (which happens to employ some of the biggest heroes of my life!!).
Today, however, since I belong now to the state of Minnesota (as long as my son is a
resident here, at least), I had the procedure performed at a University of Minnesota
hospital.
There was a lot that was similar, but there were also several differences.
The first notable difference was the fact that Northwestern is much more crowded, which
means wait times are much longer. Here at the U of M, I got in right away, and no one
was rushed. There was so much lack of pressure about timing and such.
The nurses and doctors were just as nice as those in Chicago. Even though all my dignity
was cast aside due to the amount of physical exposure I was being subjected to, I was
still treated with a lot of respect, and appreciated being called,”sir” and “Mr. Berg” even
though I was only wearing hospital gown and I had to rely on nurses to help me go to the
bathroom.
The ordeal today went just fine, actually. The U of M is not as streamlined/organized as
Norrthwestern is, but, because they are not as busy, i do get a lot better special
attention. Also, Northwestern has become pretty cheap as far as serving food and drinks
afterwards. When I go there, I’m lucky to get a cold turkey sandwich on white bread.
Today, at the U of M, not only did I get a great chicken sandwich meal! but also a real
nice tv dinner chicken dinner.
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i don’t know alll the results of the testing, but, overall, I think I can easily trust this team
here to take care of me, even though I still feel a strong devotion to my peeps at
Northwestern, who were and still remain extra special occupants in my precious list of
my personal heroes!
Heart Scare, but better now
January 20, 2012
I Had a bit of a scare lastnight . . . speeding heart rate, shortness
of breath, had to call 911, am now in the hospital at Northwestern
Memorial in downtown Chicago again where I had my heart
transplant 3 years ago. Would be nice to have some visitors!
(Feeling much better now!)
Health Update
May 9, 2013
Well, it’s coming up on Mother’s Day this weekend.
Last November, when I had my last heart biopsy at Northwestern in Chicago, I was
assigned a new cardiologist, Dr. Robert Gordon. My discharge orders included a
modification of one of my prescriptions, Mycophenolate (it’s one of the steroid meds I
have to take in order to prevent my immune system from attacking my new heart). He
doubled my daily dosage from 500mg/day to 1000.
Well, for whatever reason, that never got communicated to my pharmacy (Walgreen’s),
and so, I just continued taking the lower dosage. 6 months later now (WOW! Can’t even
believe that much time has passed), Northwestern wants a status update. When I told
193 / 236
her that I had only been taking the 500, she (Katie), needed to go back and find out
exactly what the discharge orders were.
The next day, she called and told me that Dr. Gordon wanted me to go to my local
hospital, (St. Anthony in Rockford, IL), to get another echocardiogram (i.e. ultrasound),
which measures how efficient my heart is, comparing the percentage of the amount of
blood going IN to the heart vs. the amount coming back out.
So, I did that this past Tuesday, and, my nephew, who’s naturally curious about things,
was allowed to come in with me and watch.
The results were sent back to NW, but, I still haven’t heard what the results are. I called
this afternoon, but Katie, Dr. Gordon’s current nurse practitioner), had already left for the
day.
Hopefully, I’ll find out tomorrow!
Comments
Ah, you and Andrew shared the same cardiologist back in the day. I assume all was good
as you didn’t mention anything last post. (I’m reading backwards in time.)☺
—Wendy Col, March 30, 2016
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Friday, September 6, 2013
September 6, 2013
Since I last wrote, the summer has come and gone. It has been, at best, semi-interesting
– moderately interesting.
In any event, I see that I left off back in May, not knowing quite sure what the results of
my blood tests were. Well, it turns out I’m fine, as far as the medicine levels are. They
are where they should be. The only change has been the increase in one of the antirejection
meds.
I also recently learned that I need to watch my potassium! (If it’s too high, I could
actually start having chest pains!) — Hence, NO BANANAS FOR ME!!
I also severely maimed several weeks of the summer by injuring my left foot with a
severe puncture wound from the tip of a fallen tree branch back in early June. It became
very infected and once the swelling and infection had gone down, I still noticed that
something was still in there. Sure enough, embedded deep within the foot was a piece of
wood/bark about 2cm long that required my having to have foot surgery. It was really,
really quite the ordeal, even involving my having to stuff the hole left by the surgery with
sterile packing strips for a few weeks.
Thank God THAT medical nightmare is over with! (Now I’m just waiting for the next one
to hit! HA HA!!)
Two other things, I DID finally see a dermatologist a couple months ago. Luckily, as much
as I love the sun, I DON’T have skin cancer, That’s the GOOD news! The BAD news is that
I have a couple annoying warts, which are caused by a virus which apparently will NEVER
go away. And, since I’m immuno-suppressed, that just makes it all the worse! — Oh well.
Perhaps I shouldn’t complain THAT much! I guess if I had to have one or the other, I’d
choose a couple warts over melanoma any day!
The final thing I thought I’d mention, is that today I went and saw an ophthalmologist,
(and, yes, as I write this, it is with dilated pupils!) to get an update on this eye disease I
also have which is called keratoconus. It’s a condition I was diagnosed with about a
dozen years ago, which is a thinning of the cornea. It is currently most pronounced in my
left eye, and only somewhat evident in the right.
My left eye is virtually useless, except maybe to provide depth perception.
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My Fifth “Birthday”
November 11, 2013
It was exactly 5 years ago yesterday and today that I was receiving my newly
transplanted heart! I have my next annual biopsy scheduled for this next upcoming
Friday.
My updated story
December 26, 2013
I am a heart transplant recipient and posted this yesterday on Facebook and would like
to share!
—–
PLEASE RESOLVE THIS CHRISTMAS AND NEW YEAR’S TO GIVE THE GREATEST GIFT YOU
COULD POSSIBLY GIVE, A GIFT THAT ACUTALLY COSTS YOU NOTHING — THE GIFT OF
LIFE!!
Please read my story:
It was the middle of an unusually cold, yet calm night in late September in my precious
hometown of Rockford, IL that I’ll never forget. Strapped helpless and clueless on a
196 / 236
hospital gurney, I found myself being rushed through an all-white cement tunnel, my
sister chasing right behind me. Looking up, I saw her tear-filled eyes, causing my eyes to
well up too. I confessed to her, “I’m scared Sue! I had no idea this was so serious!” —
That was the first moment that I finally felt the frigid truth of fragile my life was.
Wearing only my hospital gown, and a thin blanket, I was whisked out of double doors
and thrust into the harsh cold, night. Before me were the bright lights and loud airchopping
sounds of a waiting helicopter. Forty-five minutes later, I was unloaded into the
care of people who could give me new hope.
“We think you should begin planning for Steve’s death.”
Those were the devastating words uttered to my mom and sister in a private
consultation room about a week earlier. Several feet away, heavily sedated in morphine
bliss, my feeble, jaundiced body continued begging my enlarged, failing heart for more
and more oxygen rich blood. I was utterly unaware of the severe dire straits I was in. I
literally had hours to live. Even though I knew I was suffering from a severe case of
congestive heart failure, it never occurred to me that my death was so imminent, after
all, I was only 39 and in the care of trained medical professionals. The reality was, if I
weren’t moved to a facility qualified and equipped to perform heart transplants as soon
as possible, my life was doomed.
Even though my local cardiologist had given up me, fortunately for me, my sister had
given up on him. She refused to believe that my tenure on this earth was due to expire
any time soon. After being turned away at the last minute by the hospital at the
University of Wisconsin in Madison (because my insurance status was still pending), Sue
spent every waking moment reaching out through whatever means possible to people
and organizations who might take pity on my plight and help out somehow! Not only was
she was even in contact with the producers of Oprah Winfrey, but also local and even
national politicians (including President Bush’s office as well). She also tirelessly called
and emailed letters to hospitals all over the country that were qualified to perform heart
transplants (very few are).
The next several days of nail-biting anguish and anticipation while waiting for any kind of
response to my sister’s inquiries were brutal. Still keeping me in the dark about the real
danger I was in, since the real truth would have unnecessarily upset me (I was never
told, for instance, that the cardiologist wanted to put a sign outside my hospital room
door: “DNR” meaning, “DO NOT RESUSCITATE”), I was, ironically, the one who was most
at peace.
197 / 236
Finally, before all hope was all but lost, someone responded to my sister’s email. Christ
Advocate Hospital in a distant southern Chicago suburb, was starting up a heart
transplant program of their own, and were looking for patients who would likely have
good outcomes. Even without my insurance matters finally resolved, it was only a matter
of several hours before I was being prepped for my first, and so far, only, helicopter ride.
Christ Advocate did a great job reinforcing the grossly enlarged, mass of tissue that my
heart had morphed into, but, as fate would have it, I was later transferred by ambulance
through the busy streets of Chicago to a hospital that has a long history of successful
heart transplants, Northwestern Memorial Hospital in downtown Chicago, home to some
of the finest medical professionals on the earth; that includes the physicians, interns,
nurse practitioners, nurses, nutritionists, nurses’ aides, technicians, etc, etc. etc.
After only a few more weeks, I was determined healthy enough to be placed on the
UNOS (United Network for Organ Sharing (www.unos.org). After only three days of being
on the list, (most people have to wait several months if not even years), again, late at
night, I got the long-awaited call that saved my life. World renowned surgeon, Dr. Patrick
McCarthy, called and told me that they had “a Cadillac of a heart.” November 10, 2008,
was the fateful day that while tragic for one family, was miraculous for mine. Needless to
say, Christmas 2008 was particularly special for me.
That was five years ago. Just last month, I had my fifth annual checkup at Northwestern.
I am pleased to report that, thanks to the selfless generosity of some anonymous person
who gave me the gift of life, his or heart is still beating as strong as ever now inside me!
Today is Christmas 2013 and, while we’re all in the giving spirit, I feel compelled to
challenge everyone, why not resolve RIGHT NOW to give the greatest gift you could
possibly give, a gift that actually costs you nothing, the gift of life.
Your timely or untimely demise could potentially save the lives of at least seven other
people, and greatly improve the quality of life of so many more. It’s a horrible, crying
shame that the number of people who are in need of a life-saving transplant is much
greater than those willing to provide. That ratio should be reversed.
I urge you, if you are not already an organ/tissue donor, PLEASE click the link below and
“Register” to become a donor RIGHT NOW! If you already ARE a donor, THANK YOU,
THANK YOU, THANK YOU!! — Please feel free to spread my story to everyone you know
198 / 236
as well.
http://donatelife.net/
God bless and Merry Christmas!!
Steven Berg
swberg@live.com
www.facebook.com/swberg
twitter: @stevenwberg
http://www.caringbridge.org/visit/steveberg
http://steveberg.wordpress.com/
(P.S. To learn more about my story, or if you would like to contact me for any other
reason, I’d love to hear from you!)
Updated Story
December 27, 2013
Hey Everyone! I posted this on my wall on Christmas and sent it out to a few newspapers
and talk shows! — PLEASE SHARE on your own Timelines!
199 / 236
PLEASE RESOLVE THIS CHRISTMAS AND NEW YEAR’S TO GIVE THE GREATEST GIFT YOU
COULD POSSIBLY GIVE, A GIFT THAT ACUTALLY COSTS YOU NOTHING — THE GIFT OF
LIFE!!
Please read my story:
It was the middle of an unusually cold, yet calm night in late September in my precious
hometown of Rockford, IL that I’ll never forget. Strapped helpless and clueless on a
hospital gurney, I found myself being rushed through an all-white cement tunnel, my
sister chasing right behind me. Looking up, I saw her tear-filled eyes, causing mine to
well up too. I confessed to her, “I’m scared Sue! I had no idea this was so serious!” —
That was the first moment that I finally felt the frigid truth of how fragile my life was.
Wearing only my hospital gown, and a thin blanket, I was whisked out of double doors
and thrust into the harsh cold, night. Before me were the bright lights and loud airchopping
sounds of a waiting helicopter. Forty-five minutes later, I was unloaded into the
care of people who could give me new hope.
“We think you should begin planning for Steve’s death.”
Those were the devastating words uttered to my mom and sister in a private
consultation room about a week earlier. Several feet away, heavily sedated in morphine
bliss, my feeble, jaundiced body continued begging my enlarged, failing heart for more
and more oxygen rich blood. I was utterly unaware of the severe dire straits I was in. I
literally had hours or a few days to live. Even though I knew I was suffering from a severe
case of congestive heart failure, it never occurred to me that my death was so imminent,
after all, I was only 39 and in the care of trained medical professionals. The reality was, if
I weren’t moved to a facility qualified and equipped to perform heart transplants as soon
as possible, my life was doomed.
Even though my local cardiologist had given up me, fortunately for me, my sister had
200 / 236
given up on him. She refused to believe that my tenure on this earth was due to expire
any time soon. After being turned away at the last minute by the hospital at the
University of Wisconsin in Madison (because my insurance status was still pending), Sue
spent every waking moment reaching out through whatever means possible to people
and organizations who might take pity on my plight and help out somehow! Not only was
she was in contact with the producers of Oprah Winfrey, but also local and even national
politicians (including President Bush’s office as well). She also tirelessly called and
emailed letters to hospitals all over the country that were qualified to perform heart
transplants (very few are).
The next several days of nail-biting anguish and anticipation while waiting for any kind of
response to my sister’s inquiries were brutal. Still keeping me in the dark about the real
danger I was in, since the real truth would have unnecessarily upset me (I was never
told, for instance, that the cardiologist wanted to put a sign outside my hospital room
door: “DNR” meaning, “DO NOT RESUSCITATE”), I was, ironically, the one most at peace.
Finally, before all hope was lost, someone responded to my sister’s email. Christ
Advocate Hospital in a distant southern suburb of Chicago, was starting up a heart
transplant program of their own, and were looking for candidates who would likely have
good outcomes. Even though my insurance matters were not finally resolved, it was only
a matter of several hours before I was being prepped for my first, and so far, only,
helicopter ride.
Christ Advocate did a great job reinforcing the grossly enlarged, mass of tissue that my
heart had morphed into, but, as fate would have it, I was later transferred by ambulance
through the busy streets of Chicago to a hospital that has a long history of successful
heart transplants, Northwestern Memorial Hospital in downtown Chicago, home to some
of the finest medical professionals on the earth; that includes the physicians, interns,
nurse practitioners, nurses, nutritionists, nurses’ aides, technicians, etc, etc. etc.
After only a few more weeks, the Northwestern cardiac team determined that I was
healthy enough to be placed on the UNOS list (United Network for Organ Sharing
(www.unos.org). After only three days of being on the list, (most have to wait several
months if not even years), I got the long-awaited call that saved my life. World renowned
surgeon, Dr. Patrick McCarthy, called late one night and told me that they had “a
Cadillac of a heart.” November 10, 2008, was the fateful day that while tragic for one
family, was miraculous for mine. I was put under and didn’t wake up for another 27
hours. I had all kinds of tubes and wires attached to me and spent the next several
weeks mostly tethered to the wall and having to re-learn how to walk. I was eventually
released a week or so before Christmas. Needless to say, Christmas 2008 was
particularly special for me and my family.
That was five years ago. Just last month, I had my fifth annual checkup at Northwestern.
201 / 236
I am pleased to report that, thanks to the selfless generosity of some anonymous person
who gave me the gift of life, his or heart is still beating as strong as ever now inside me!
Today is Christmas 2013 and, while we’re all in the giving spirit, I feel compelled to
challenge everyone reading this to resolve RIGHT NOW to give the greatest gift you
could possibly give, a gift that actually costs you nothing, the gift of life.
Your timely or untimely demise could potentially save the lives of at least seven other
people, and greatly improve the quality of life of so many more. It’s a horrible, crying
shame that the number of people who are in need of a life-saving transplant is much
greater than those willing to provide. That ratio should be reversed.
I urge you, if you are not already an organ/tissue donor, PLEASE click the link below and
“Register” to become a donor RIGHT NOW! If you already ARE a donor, THANK YOU,
THANK YOU!! — Please feel free to spread my story to everyone you know as well.
http://donatelife.net/
God bless and Merry Christmas!!
Steven Berg
swberg@live.com
www.facebook.com/swberg
twitter: @stevenwberg
http://www.caringbridge.org/visit/steveberg
http://steveberg.wordpress.com/
202 / 236
(P.S. To learn more about my story, or if you would like to contact me for any other
reason, I’d love to hear from you!)
Thursday, February 13, 2014
February 13, 2014
The following is a cut and paste from my Facebook post that I posted earlier today to the
group that I’m a part of: “Heart Transplant Survivors”
————————————————–
The wierdest thing just happened to me a couple hours ago. I went in to my dentist
today at noon for a deep cleaning, (since it hasn’t happened in at LEAST a decade But,
she, (the dentist), refused to do it because she was afraid that the bacteria that is lodged
between and on my teeth (in the form of plaque/calculus), would be released and could
possibly cause an infection. And, since I’m on the anti-rejection meds, and NOT taking
any anti-biotics, she didn’t feel comfortable doing it.
She DID try calling my cardiologist’s office, but, like I knew, she wouldn’t be able to get
through to anyone. I personally felt like she was going a little over-board. Has anyone
else been turned away by your DENTIST because of your anti-rejection meds???
Like · · Share · 4 hours ago
Roxanne Watson, Barbara Hardy Kellner and Nicholas Mccreanney like this.
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52 of 69
View previous comments
Ruby Lee Berthelette Oh yes, it’s a must… you have to take antibiotic 2 hrs
before your cleaning..This Denist was watching your back, go get her some
flowers for Valentines…for caring enough about you. I would.
3 hours ago · Edited · Unlike · 3
Cyndi Blankinship Springer I was always pre-med prior to TP, but coordinator
says NO antibiotics pre-dental now. I make the dentist & doctor duke it out
between themselves. So far, I’ve had one cleaning & 4 fillings no meds.
204 / 236
3 hours ago · Unlike · 3
Jennifer Eymard Sanchez My daughter was just transplanted and we were told
absolutely to pre medicate every time she goes to the dentist
3 hours ago · Unlike · 2
Taber Burleson My daughter is a transplant patient, amoxicillin prophylaxis is
mandatory before dental cleanings. The germs from your mouth enter into your
bloodstream with all the poking and flossing. You should thank her for being so
cognizant.
3 hours ago · Unlike · 2
205 / 236
Kylie Ann Chappell Due to the CHD, then transplant, I have always taken
antibiotics before a dental procedure (1 gram amoxicillin 1 hour before).
Protocol at my hospital here in Australia.
One time the dentist said I didn’t need it (hospital outpatients) but still did …See
More
3 hours ago · Edited · Unlike · 2
Casey Bailey Same here. I always have to pre medicate
3 hours ago · Unlike · 1
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Julien Roy I always have to take a mega dose of amoxicillin 1 hour before a
cleaning. In Canada and USA.
3 hours ago · Unlike · 3
Bruce Runner I am also given antibiotics before cleaning teeth.
3 hours ago · Unlike · 1
207 / 236
Sophia Sorolis Be glad your dentist was on top of things. We also pre-medicate.
3 hours ago · Unlike · 2
Norman Keller i always pre-medicate too
3 hours ago · Unlike · 1
208 / 236
Tim Mangum Here are the current guidelines from
AHA.http://www.heart.org/…/Infective-Endocarditis_UCM…. With that said, check
with your team and have them write a letter either way and give a copy to the
dentist.
Infective Endocarditis
www.heart.org
The American Heart Association explains the link between congenital heart
defect…See More
2 hours ago · Unlike · 1
209 / 236
Taber Burleson My daughter also has a central line via port. It is mandatory to
pre-treat for infective endocarditis in this situation. Those with central line,
which is not on the AHA website, need to prophylactically treat.
2 hours ago · Unlike · 1
Richard Walker I have to take antibiotics before I get my teeth cleaned, ever
since my heart transplant.
2 hours ago · Unlike · 1
Russ Tisman My center requires us to ore medicate with antibiotics the morning
of dental work. Standard protocol.
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2 hours ago · Unlike · 1
Barbara Nichols My husband’s dentist contacted his cardiologist before doing
any work on him.
2 hours ago · Unlike · 1
Linda Kamphuis In Holland we don’t have to take antibiotics before cleaning
teeth. Even if the dentist pulls out a tooth you don’t have to take antibiotics
before or after that. New rules recently…
2 hours ago · Like
211 / 236
Ally Babineaux 2000 mg of amoxicillin 30 min before cleaning. That’s all there’s
is.
2 hours ago · Unlike · 1
Taber Burleson The National Institute of Health puts the decision upon the
shoulders of each physician or team. Medication regimes vary greatly amongst
transplant patients and the level of ones immunosuppression or ability to heal is
also taken into account. You can…See More
212 / 236
Dental Management of the Organ Transplant Patient
www.nidcr.nih.gov
The National Institute of Dental and Craniofacial Research remains committed
to improving the oral, dental and craniofacial health of our nation.
2 hours ago · Unlike · 1
Linda Schwab Chandler Always 2000 mg amoxicillin 1 hr before dental work
2 hours ago · Unlike · 2
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Ally Babineaux My dentist has a bottle when I get there. And always call me the
day before to remind me to come early for dose.
2 hours ago · Unlike · 2
Dave Costello Ally – Right On! You go girl!
2 hours ago · Unlike · 1
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Victoria Doyle My dentist won’t touch me unless I’ve had antibiotics first. He
knows the latest theories, but we’re learned to be careful.
2 hours ago · Unlike · 2
Robert Kelly i had to get telephone confrontation or fax to get the dentist to do
cleaning for my daughter to get her teeth cleaned even though I knew the tx
teams policy no antibiotics for routine dental procedures for my daughter
2 hours ago · Unlike · 1
Marcus James Yeah bud you need anti biotics…its known for people with heart
disease, but especially heart transplant
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2 hours ago · Unlike · 3
Holly Portz Koiro My DDS called my tx Dr. before he would treat me. Always
antibiotics. Better safe than sorry. I’m glad someone is looking out for you so
please don’t be mad.
2 hours ago · Unlike · 2
Ron Wasilewski Steve I get the same reaction. Seems like most are afraid of me.
2 hours ago · Unlike · 1
216 / 236
Christine Post We premed as well
2 hours ago · Unlike · 2
Lynne Richner I have to take pre medications before a regular cleaning!
sometimes I tell them I did, and when I get home I take them, but that is just a
regular cleaning!
2 hours ago · Unlike · 1
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Beverly Diane Tipton I always always take pre-procedure antibiotics for dental
and even invasive tests like endoscopy, etc. It isn’t going overboard. That
bacteria is real and could kill you. Your dentist is wise to refuse to do it without
precautions.
about an hour ago · Unlike · 2
Laura Hofheins When I go to the dentist they aways ask if I took my pre meds.
I’m sure they wouldn’t do a thing until I had.
about an hour ago · Unlike · 2
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Sherry Clemons I had to take antibiotics before and after transplant. My Dentist
won’t touch me if I haven’t followed protocol!! Infection can go from mouth
straight to your heart!!!!!!
about an hour ago · Unlike · 1
Tonya Renea Buchanan Your dentist did the right thing and protected you from
a serious health risk. ALWAYS take an anti-biotic pre-med treatment before
having any dental exam or work. You are lucky!
about an hour ago · Unlike · 1
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Osvaldo Gomez I do; but they always give me a dose of antibiotics a couple
hours before any dental procedure and never had any problem.
about an hour ago · Unlike · 1
Nancy Watson Orgaz No meds for routine cleaning but meds for anything more
about an hour ago · Unlike · 1
220 / 236
Tammi Rowles Becker the dentist did the right thing , since this was a deep
cleaning, if it was your regular 6 month cleaning I think it would have been ok to
do without premed, but to let you know they have changed the way premeds
are taken, you only need to take premed …See More
52 minutes ago · Unlike · 1
William Smith I’m always giving a antibiotic 10 days before appointment
50 minutes ago · Unlike · 1
221 / 236
Donna Alphabet Steve our transplant centre always tell us to take antibiotics
before our appointment
43 minutes ago · Unlike · 2
Cherie Finneman i do antibiotics for every dental appt
27 minutes ago · Unlike · 3
Steven Berg OK OK OK Everyone! I got the message! It turns out that *I* am the
one who is CLUELESS in Rockford!! — So, I went ahead and called my NP who
told me basically the same thing that all of you guys are sharing here! So, now
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there should be a bottle of amoxicillin waiting for me to pick up at Walgreens!!
20 minutes ago · Like · 4
Denise Heithus Troy My husband HAS to take antibiotics before going to the
dentist for a cleaning, I’m sure like everyone else on here does. Talk to your
transplant team and find a new dentist after you get abx.
16 minutes ago · Unlike · 1
Denise Heithus Troy Steve, you live in Rockford,il?????0
15 minutes ago · Unlike · 1
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Michael Isaacson I also take an anti-biotic before a dental appt.
14 minutes ago · Unlike · 1
Steven Berg Yep, Rockford, IL!!!
14 minutes ago · Like
224 / 236
Natashia Carson Wow!! I was told no since my biopsies and allomaps results are
good. Now I’m scared!!!!
13 minutes ago · Unlike · 1
Steven Berg By the way, I probably was ALREADY told that I needed to do this,
but, it probably went in one ear and then out the other!!
13 minutes ago · Like
225 / 236
Denise Heithus Troy Wow, so do I! My husband is the transplant patient.
13 minutes ago · Unlike · 1
Steven Berg OK, cool! I’m at Mary’s Market at Edgebrook right now, in fact.
12 minutes ago · Like
226 / 236
Stanford P. Cormier Every time I go to the Dentist I call my Dr. First.
11 minutes ago · Unlike · 1
Denise Heithus Troy Haha. Our good friend owns the popcorn parlor over there.
I live near spring creek/alpine. Small world!
10 minutes ago · Unlike · 1
Joy Pharr Rumple Yes and I worked for a dentist for 17 yrs..if for some reason
you are supposed to pre med with an antibiotic they will not see you if u don’t
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take it. I am required to also because of transplant
10 minutes ago · Like
Benita Bolon Antibiotics every time!
5 minutes ago · Unlike · 1
March 31, 2015
March 31, 2015
A week ago Sunday (March 22) was my 46th birthday. Since March is a very popular
birthday month in my more immediate family, (mine and my uncle Ethan’s birthday are
both on the 22nd, my niece, Sydney, is March 23, and my cousin Connie was born on
March 29), we often have a common birthday party over at my aunt and uncle’s house in
228 / 236
Cherry Valley, IL.
Well, wouldn’t you know it, Sydney and I guess her brother, Zander, too, had both been
pretty sick with cold/flu-like symptoms. Needless to say, I caught whatever they had in a
MAJOR WAY! That was now a week ago. One of the great features of antirejection/
immune-suppressant drugs is the fantastic side effect of getting to experience
the illness much longer than normal.
— (Thanks for the BEST birthday present EVER Syd and Z!! — JK!!)
[KILL ME NOW!!!!].
Friday, January 29, 2016 — Left AND Right Cath Lab Check —
Part 1
January 29, 2016
It’s been over two years since I’ve had to have my transplanted heart checked out by my
cardiac team at Northwestern in Downtown Chicago. There has been some turnover this
past year and I have pretty much a whole new team of doctors and nursing staff. The
guys from the Cleveland Clinic who came to Northwestern to start what has become a
stellar program, moved on down to Christ Advocate hospital in Oak Lawn, which, was the
first facility willing to take on my despite my lack of insurance.
— Since it has been so long since I’ve had any kind of invasive testing done, I am pretty
concerned about the results (which, will show whether or not there are signs of rejection
occurring.) I AM fairly religious about taking my medications, every day, but just
KNOWING the mere fact that sometime down the road, even this heart will start failing
as well, (just a matter of time), is enough to be paranoia inspiring.
— My mother, who is the reluctant new owner of a new smart phone had to come down
with me from Rockford, since I cannot be released on my own after having been sedated.
The hospital actually owns a little hotel called the Worcester House which is equipped
much like an extended stay place, with a kitchenette and everything, which is where we
stayed last night after a nice dinner and where we watched a wonderfully intelligent
Trump-less Republican debate.
229 / 236
— I had to totally fast after midnight and then show up at 7:00 am at the hospital’s cath
lab. Everything proceeded in the typical lock-step, sterile, yet ultra-friendly and
respectful way which has always endeared Northwestern to me. Today, I was even more
surprised because I was actually able to have my own private room, instead of being
pseudo-cloistered off by sliding curtains, which fail to filter out sounds, and . . . um . . .
smells. IF I were to complain about ANYTHING today, it was the fact that the staff held
back too much on the Midazolam and Fentanyl 🙂 These drugs are not used as a general
anesthesia, but, ARE intended to reduce anxiety and cause drowsiness. Since I had to
get up so early today, the idea of falling into an abyss of conscious nothingness, was one
of the things I was looking forward to, today. — Alas, I was left disappointed, However, I
DID find out later that, even though I DID wake up a few times on the thin cold metal
shelf, I DID collect enough slumber throughout the day to keep me conscious even up to
now! — In fact, I think I was asleep at least 80% of the time that (whoever it was) came
into my room and spread cold gel over my chest and then used an ultra-sound machine
on it to get an echocardiogram.
My mom stopped in for a couple minutes while I was having to lie flat and still for a while.
The only thing left was for me to get an X-Ray. After that, and after a double-check on
the wound, I could be released. That all happened before 1:30. I was told that, according
to the lab work done on me earlier (i.e. the results of the blood draws), that everything
looked just fine, but that my sodium levels were a little LOW!!! They actually told me to
STOP drinking so much water! (I couldn’t believe my ears!) — I’ve been deliberately
drinking MORE water in order to get healthy and lose a few pounds!
When I was finally released and got dressed, I made several attempts to contact my
mom, but, to NO avail. Her outgoing message kept saying that she could not be reached.
She had ALSO been trying to call me as well, but, her calls weren’t going through.
Eventually, when I finally found her, it became very clear to me as to what her next
smartphone lesson would be . . . “How to Turn Off Airplane Mode.”
Comments
Steve, I am soo very glad things went well-and that you eventually did reach your Mom.
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🙂 Praise God for good news!!!!!
—Becky Page, January 30, 2016
I now this is a little older post but enjoyed your post and note that Andrew had his biopsy
just nine days before you.. We then came back a couple weeks later for follow up.
If it’s any consequence even when our phones work we have the worst problems
connecting to each other at NWM.
—Wendy Col, March 30, 2016
March 29, 2016 -1
March 29, 2016
Late Sunday night, I started having very severe abdominal cramping and pain,
worsening diarrhea until now nothing but blood has been coming out (sorry for
the imagery!)
I was taken to the hospital by ambulance. After some preliminary testing, it
looks like I probably have a colon infection (i.e. coilitus) that may result in a
surgery (perhaps even a colostomy.) I will be here several days.
Because of the heart transplant medicines I am taking (those that reduce my
immune system) there is an even greater concern.
I’ll have more information later. (Am very tired and am need to get some sleep
It looks the blood they’ve been drawing out CONFIRMS that I DO have a colon
infection (i.e. colitis). This means my colon is swollen due to some bad bacteria
that somehow.
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Comments
Steve, we’ll be praying that the infection will clears up quickly without any complications.
Take it easy and get better soon.
—Steve and Sheri Ford, March 29, 2016
March 30, 2016 — 1
March 30, 2016
— Well, after going 60 hours straight without ABSOLUTELY NOTHING to eat, and only
about the equivalent of maybe two cups of water, I surprisingly have more energy than I
was expecting. But still, I’ve never felt more hungry in my life.
It’s not what a lot of people think, that they’re just trying to “cleanse me.” In fact, all they
want to do is to let my large intestines/colon “relax” or “calm down” allowing it to heal
and let the swelling going down. It’s also a preventative measure to ensure that any kind
of waste material sneaks through what they call a “perforation” or “hole”, which is what
is believed to have caused the infection. The infection is no longer limited to just the
colon, but has now spread throughout the rest of the blood system.
I had a SOMEWHAT better night, last night, than the one before. My bowel movements
are still only liquid, (thankfully, the color was looking more and more normal and not as
bloody, which means that the colon is healing), and The big challenge is, that when I
start feeling that little rumble, I know it’s only a matter of seconds before . . . . well . . .
let’s just say, “THANK GOD FOR ADULT DIAPERS (and single-occupancy rooms!)
To make matters worse, the “Powers that Be” here, keep insisting that they need more
stool samples. Well, that’s easier said than done! There’s no contest when there’s a race
between the force of one’s sphincter and the ability to reach for a bedpan, slide it under
oneself, and pull down the diaper. (There’s very little volume, most of which ends up
soaked into the diaper! Nevertheless, the Poop Nazi’s are relentless and keep insisting,
“MORE POOP FROM YOU!!”
(I KNOW this was WAAAY too much information, but, you HAVE been warned!)
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Comments
Oh that’s such a pain! Love your attitude and hope that preforation is healing quickly. I
have another son (not Andrew) with Crohns so know a little about the resting the colon
and hunger because no food allowed issues. Hopefully the pooh Nazis will get their
required prize and they will stop harassing you.
—Wendy Col, March 30, 2016
March 29, 2016
March 30, 2016
UPDATE — 7:45am — This morning, the surgery team came by and told me that I was
progressing pretty well. While Dr. Daniel Stephens, who is always looking so serious and
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somber, was explaining the situation, I asked him, “Do you ever smile?” He gave me a
slight, but seemingly-annoyed grin, and said, “Sometimes.” (I guess that was goodenough
for me.) He gave me the good news and told me that I should now be able to go
on a clear liquid diet, which, somehow, includes coffee and Jell-O. As soon as they left
the room, I ordered three bowls of Jell-O, 3 cups of Cranberry juice, and a cup of coffee.
This was my breakfast (Pathetic I know, but, at least it beats Ice chips!
Comments
Her Stephen. I see your at my son’s transplant hospital. Sounds like things are going the
right direction. Praying for continued good progress. May your stay be short and the food
better than it usually is.😊
—Wendy Col, March 30, 2016
March 30, 2016 — 3
March 30, 2016
9:15pm
It’s been a pretty lonely, yet not uneventful day. The doctor’s here seem to be impressed
with my progress. The main guy over-looking my case is a nice guy by the name of Dr.
Torfti Thorkell Hoskuldson. He is somewhat the equivalent of what Dr. Cotts was to me
when I was at Northwestern. When I first came in, and after the CT scan, he came and
told me that he saw a few different scenarios playing out, the worst of which would be a
colostomy which would mean they would have to cut out a chunk of the colon and attach
an external colostomy bag to my abdomen. The best case would be waiting it out and
allowing it to heal on its own. — This morning he remarked at how quickly I seemed to be
progressing and that it seemed to be that the best case scenario is what was seeming to
play out.
The team here DOES seem to be struggling with nailing down specific causes. At first
they said it probably WAS diverticulitis, but then after the CT, there was no sign of it.
They reviewed other possible causes, none of seemed likely either. One of the consults
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that came to meet with me called me the “Mystery man.” — However, they concluded
that there must be some diverticula that the CT didn’t pick up. (I guess what this tells me
is that I need to make sure I eat more fiber!)
I did start secretly recording these conversations because my family and friends keep
asking me “What did they say? What did they say?” — And, of course, I don’t always
remember..
I’ll upload these when I get a chance.
03/31/2016
April 1, 2016
7:09AM — FINALLY!!! I CAN EAT!!
The surgery team came down twice already. The first time, at around 7:00 in the
morning or so, my weird dream was rudely assaulted by the sound of Dr. Stephens’
voice. I must have been in a real deep state of REM because I felt SOOOO disoriented,
like an abductee looking at the towering ominous figures in white coats standing at the
end of my bed, backlit only by the glow of the silent TV behind them, “MR. BERG!! MR.
BERG!! HOW WOULD YOU LIKE TO GO ON A REGULAR DIET TODAY?” I felt really, really
cold. — It took me awhile to finally realize where I was. Once I did, I smiled
appreciatively, like a pitifully thankful slave, and said, “Thank you! That would be great,
sir!” — Dr. Stephens said.
They say that my status keeps improving, which means the infection isn’t growing. The
exact cause is still not known, undetected diverticulitis is the most likely cause. The overseeing
surgeon in my case is Dr. Hoskuldsson. He keeps telling me that he sees the best
case scenario playing out and mentioned something about releasing me. Yesterday, he
even mentioned that I seemed to be as normal and healthy as anyone he sees walking
around here. He then
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Last night I was chatting with a heart transplant guy who happened to be one of my
Facebook friends and who was recommended to me by the infectious disease lady, Jo
Anne. I had mentioned to her yesterday that I was interested in volunteering here at the
hospital and speak to other people who are in and have been in similar situations like
me. His name is Bill Carlson. He agreed to come up to my room today and we chatted for
a little bit. He told me about the weekly Heart Transplant support group meeting that
meets here every Thursday’s one floor almost directly above me at noon . . . . which, I
realized, looking up at the clock, was only 40 minutes away. I told Bill I wanted to go, so,
we did! What a blast that was! 20+ people met in this conference room who could totally
relate to my own experiences. Some stories I’ve heard really make me realize just how
fortunate I really am!
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