[UA] (no subject)

[jon at joncapps.com]

----- Original Message -----
From: "David M Jacobs"

> Ahem... How -- if I'm not intruding -- did you get to be on your fourth
> liver?  Those things regenerate pretty quickly from what I've heard.

I don't bing it up *too* much, but I don't mind talking about it.  And for
everybody on the list, if you are an eligible donor, please sign a donor
card, and tell your family and friends that you'd like your organs
donated.  IIRC, donor cards aren't legal documents in the US and only
express intent.  The next of kin still needs to give consent.

I'm posting this onlist because it strikes many people as having a UAish
feel.

They have some regenerative ability, so long as they're not too damaged.

I got sick just before I turned 12.  Docs did a lot of tests to see what
was wrong, and ultimately diagnosed me as having hepatitis.  This was back
in 1989, and hepatitis came in three forms, Hep A, Hep B, and
"Non-A/Non-B" Hep.  Non-A/B was a catch-all for alll hep diagnoses that
weren't A or B.  That's what I had.  They couldn't figure out what caused
it.  I went to a specialist who poked and prodded me some more, and said I
had "auto-immune" hepatitis.  My immune system was attacking my own liver.
 He had seen maybe a dozen such cases before me.

I was treated, but the damage had been done.  There comes a point when the
liver just gets too sick/damaged to heal itself.  The specialist
recommended I be seen at a transplant center to be evaluated.  I was
living on the North Carolina coast at the time, and the two closest places
to go were Pittsburgh and Dallas.  Doc Starzl, who had come up with the
original technique used to keep patients alive during the 10-12 hour-long
surgery, was still practicing in Pittsburgh, so we went there.

I started bleeding internally on the drive up.  It hurt like a bitch.
When we got to the hospital, the ER staff started getting paperwork ready
to put me on the transplant list as soon as they saw me.  I was so
jaundiced I was orange, and in so much pain I couldn't move from a foetal
position.  My liver was basically a lump of dead tissue, and toxins were
building up in my system.  I went into a coma on a Wednesday, about a day
after I arrived at the hospital.

That Friday the transplant team told my parents I was not expected to
survive the day.  They wanted to try a living donor transplant.  The idea
was to take half the liver from one of my parents and give it to me.  This
has since been done, but it's rare, and dangerous for poth the donor and
the recipient.  At the time, however, it was a theoretical procedure, and
the docs were presenting it to the hospital ethics board while my parents
were getting tests to see which would be a better donor.  A liver became
available before the test results came back.

True story:  Doc Starzl went personally to harvest the liver.  At some
point on the way back, the ambulance suffered a flat, and Starzl had to
hitchhike.

I stayed in a coma until the following Wednesday.  Had some interesting
dreams then, too.  Capt. Picard taking me and Joan of Arc to George
Washington's funeral;  me ordering frog legs at a restaurant, but the
waiter came back and said Kermit was the only frog left in the world, and
they weren't going to kill him for my meal;  some water related dreams.

Anyway, the first transplant worked, but not well.  Theory is that the
flat caused the liver to be out of a host a bit longer than it should have
been.  For whatever reason, it didn't ever work very well.  I was in the
hospital about 18 months out of the 2 years between my first and second
transplant.

During all this hospital time I got to meet Stormy Jones.  Stormy was a
girl from Texas, about a year younger than me, who was the first survivor
of a combined heart/liver transplant.  She was 3yo when she had it.  She
started having heart complications about the time of my first liver
transplant, and we were frequently in the hospital at the same time.
About a year after I first met her, we were both in the hospital.  I saw a
lot of nurses rush down the hall in the direction of her room.  An hour
later I watched CNN as the news caster reported her death.

The second transplant went much better than the first.  This was June '91.
 However, the liver suffered a couple of small lacerations in the car
accident which killed the donor.  They were closed before transplant, but
one of them opened back up after the surgery was over.  They kept giving
me blood and couldn't figure out where it was going until they did an
ultrasound and saw a mass of blood right next to the liver.  They opened
me back up a week after the transplant and removed a clot of blood that
massed 2.5kg.  That's the mass of a small newborn.  And it formed in one
week.

About six months before the second transplant I became diabetic.  I had
been on prednisone since the first transplant, and I was on prograf, which
at the time was in its final stages of testing before FDA approval.  Both
meds cause sugar problems.  I was the third child to get diabetes from
taking prograf.  I was the only one of us three who stayed diabetic.  It
later showed up as an adult side effect as well.

The hepatitis recurred after both transplants.  Biopsies looked similar to
those of my original liver, but it was no longer my genetic liver, so it
couldn't be auto-immune.  The docs considered that it might have a viral
cause, but they couldn't find a virus, and I was never contagious.

I went through my teenage years having medical ups and downs, but mostly
ups.  Every two or three years I'd spend a few weeks in the hospital.  I
went to college.  That was a problem.  I wasn't responsible enough to keep
good grades and good health at the same time.  It was one or the other.

At the beginning of 2001 I started getting worse and not getting better.
I didn't *feel* sick, until that August, but my blood labs showed that my
liver was not doing well, and I was becoming jaundice.  The docs told me
it was basically my fault.  I had not been perfect in taking my meds, and
although I was good at taking them, good wasn't good enough.  To
complicate things, prograf is hard on kidneys, and that combined with my
diabetes, which has never been easily controlled, had caused alot of
kidney damage.  I needed a new kidney as well as a new liver.

By this time, UNC (Chapell Hill, North Carolina) had developed a good
transplant program, and I was being seen there.  The transplant team was
concerned about the ethics of giving me a third transplant, when I had a
less than perfect record of med taking.  But that was mostly during my
teenage years, and I was now 25 and had grown more responsible.  Also,
they were willing to disregard the first transplant, since that liver did
little more than keep me going until a new donor could be found.  So they
agreed to put me on the list and to do the transplant.  I had my third
transplant on July 31 2002.

So far, the hepatitis has not recurred with this liver.

For those who don't know, kidney are transplanted into the front, and are
placed so that they rest just inside the ridge of the hip bone.  The
original kidneys are not removed, so long as they don't pose a greater
risk to the patient than would be caused by removing them unnecessarily.

I'm out of shape from laying in a hospital bed all summer.  I have
recently developed little spots in my vision in which it is hard to see
detail.  These are caused by lack of blood to the retina, which is a
combined result of diabetes and longterm liver/kidney damage.  And my
bones hurt from calcium being leached from them, another side effect of
prednisone, which I've been on for 15 years now.  Greg Stolze mentioned a
recent magazine article composed of journal entries of a paranoid
schizophrenic.  I read the article and many of the emotions and forced
lifestyle changes are very similar.

Damn, reading over all this, it sounds depressing.  It's not been as bad
as it sounds.  I've been lucky enough to have always had a True Friend
throughout.  It's not always been the same person, and I'm still good
friends with those that no longer hold that status.  But each one has
saved my sanity and, at some point, my life.

There;s more to tell.  I've glossed over some stuff and skipped over other
things entirely.  In addition to coming scarily close to death with my
first and third transplants, I've almost died four or five times due to
diabetic episodes.  This has resulted in an odd feeling that I won't die
until I accomplish some specific thing.  That is not necessarily a
comforting thought,  Almost dying has never been fun, and I am now so
medically screwed up, it's just a matter of time before something else
happens.  And I don't know what it is that I'm meant to  ; )

I hope this satisfies your curiosity, and maybe it will inspire something
UAish for someone on the list.  If you have any more questions, or want me
to go over something in more detail, just ask.

jon




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