[UA] My life (long)

[Jon Capps]

Joe Iglesias wrote:

> Aw c'mon, don't be such a tease, let us all see your intensely
> personal life experiences.

Ok, you asked for it...  This was typed up straight through over a couple of
nights.  I haven't edited it.

***

	I first became ill about Jan. 89, when I was in the sixth grade.  I was
becoming jaundice, but it was occurring so slowly, and my parents were
concerned with my grandfather, who had recently had a stroke, that my
yellowness was first noticed by people who did not see me every day.  By the
time I went to the doctor, I was Very Sick TM.  I had hepatitis, but it wasn
't Type A or B, which was all they had back then.  I was sent to a
specialist, who diagnosed it as auto-immune hepatitis (my body saw my own
liver as a foreign object, and was rejecting it).  He had seen maybe
two-dozen cases like mine. It was treated aggressively, but by summer, we
realized I would probably need a transplant.

	My family planned a trip up to Pittsburgh (we were living in Jacksonville,
NC) so that I could be evaluated.  Liver transplants were being done at
Duke, in Durham NC, but they only did ones with no apparent complications,
and Dallas and Pittsburgh were the next closest hospitals with liver
transplant teams.  Dr. Starzl, the doc who came up with the technique for
liver transplants, was still practicing in Pitt, so we went there.
Basically, he would hook up a blood vessel in the armpit with one in the
groin, bypassing the abdominal cavity altogether. This kept the patient from
bleeding to death on the operating table during the 12-hour long surgery.

	We left on a Friday, and I had a stomachache from internal bleeding and the
beginning stages of liver failure, although we didn't know it at the time.
I got progressively worse during the 13-hour road trip, and when we arrived
at the hospital, I was so bad off the staff placed me on the transplant list
before running any tests.  I was in so much pain that I was curled over in
the foetal position, and could not voluntarily straighten up.

	My last conscious memory was of entering the hospital.  Because of my liver
shutting down, toxins were building up in my body, and ammonia in the blood
was affecting my brain.  I went into a coma that Wednesday.  Friday morning,
the docs told my parents I wouldn't live through the day without a donor,
and they asked permission to run tests on them to see who would be the
better donor for the living-donor procedure, in which half the liver of the
better donor would be transplanted to me.  This was still an untried
procedure, and the docs were asking for approval from the hospital ethics
committee while they were running the tests.  Before the results came back,
a donor had been found; a liver was available from a car crash victim in New
York.

	I was wheeled into surgery before the liver actually arrived.  The liver
can only be outside of a host for so long (six hours, I believe).  The
surgery can be broken down into thirds; three to four hours opening, four to
six hours for the actual transplant, and three to four hours closing.  In
order to minimize the downtime for an organ, the surgery has to be started
before the organ actually arrives.  Unfortunately, the ambulance the doc was
riding in with the harvested liver suffered a flat tire, and he had to
hitchhike (I don't remember if it was to the airport or to the hospital).
Because of this, the liver was at the limit of its time outside a body when
it was implanted, but everything seemed okay.

	Let me pause here to relate what I remember of the dreams I had while
comatose.  They have grown vague now, but I can still recall some of them.
I remember being on the USS Enterprise D with Captain Picard, Joan of Arc,
and one or two other historical figures.  We were going to George Washington
's funeral.  I remember a Sea World theme park adjoining the hospital, and
that I got to swim with dolphins and killer whales as part of an aquatic
physical therapy program.  I remember going to a French restaurant and
ordering frog legs.  The waiter was gone for about an hour, then returned
saying that Kermit was the only frog left in the world, and they wouldn't
kill him for my dinner.  I know there were other dreams, but I cannot recall
them.  They were all connected in ways I no longer remember.

	The surgery was a success, but the docs thought was a significant chance
that I would have brain damage, or possibly remain comatose, because my
ammonia levels were so high.  I stayed in a coma for eight days, and woke up
the Wednesday following my transplant.  They kept me in the ICU for several
days before transferring me to a regular room.  I have memories of the ICU,
but they are not lucid.  My aunts were up from western NC, and I remember
thinking I was in a hospital just down the road from my grandfather's house.
I remember thinking I was in an arcade at the mall, probably inspired by the
lights and noises of the ICU machines.  My grandmother was there, and went
to Toys'R'Us to buy me some Lego kits, and I remember thinking she went to
Las Vegas to get them.  The hospital had this big crane thing they weighed
invalid patients with, and the swaying made me think I was on a boat.  There
was a VCR in the ICU, and I remember watching Plan 9 From Outer Space, and
the Black Hole, both very odd movies to watch when tripped out on ammonia.
I remember thinking I was in my bed at home, and that a nurse who had come
to check on me was my little brother trying to crawl in the bed.  I hit her.

	My first lucid memories after transplantation are of the hospital room.  I
didn't know I had had a transplant, and argued the fact with my Godmother,
until I looked at my abdomen.  I had an incision running from the bottom of
my sternum down about an inch below my navel, then across to the bottom of
my rib cage on my right side.  It was crusted over, and held together with
staples.  Also, there was a drainage tube from the bottom of my abdomen, on
the right side, ending in a grenade-sized bulb.  There was an incision in my
left groin and another in my left armpit where they connected the blood
vessels.  Most of the underside of my arm was numb, apparently from a cut
nerve, and stayed that way for almost a year.  The realization of what had
happened is my first lucid post-op memory.

	I was twelve years old.

	My muscles had atrophied severely; I'm still very weak today.  I had a pair
of high tops, and the nurses had kept them on my feet and laced up, but my
Achilles' tendons had still shrunk.  I had to learn to walk again.  It was
hell; I would be reduced to tears after three or four steps, but the nurses
and my parents made me get out of bed twice a day.  After a couple weeks, I
could walk around the ward with little help.

	I stayed in the hospital until through much of August, and in Pittsburgh
until almost October.  The next several months were spent running back and
forth to Pittsburgh.  Of the twenty-four months after my first transplant, I
was in the hospital eighteen of them.

	That liver never did work properly.  It kept me alive, and that's about it.
The bile ducts developed strictures, and I underwent a procedure similar to
that balloon treatment they do to unclog arteries three times a week for six
weeks with only minimal improvement.  The theory is that since the liver had
been out of a body for so long, it was somehow damaged, and would never
quite work correctly.  Over the next two years, I kept going downhill.

	During this time, I met Stormy Jones.  She was about a year younger than I
was.  When she was three years old, she became the first person to
successfully undergo a simultaneous heart/liver transplant.  She lived in
Texas, and had come to Pittsburgh because she needed another transplant (I
don't remember, but I think it was her heart).  For a year, we were both in
and out of the hospital at roughly the same time.  It was like we were
cosmically joined.  One of us would get sick and go to Pittsburgh, and
within the week the other one would be there, too.  We got pretty close.

	Then one day, there was some confusion down the hall.  I was curious, but I
knew enough to wait until later to get the gossip of what happened from the
nurses, or the other patients.  About an hour later, I watched CNN as they
announced her death.  Her heart started messing up, and the nurses wanted to
send her to the ICU, but she wouldn't let them.  She told them that it was
her time.  That was the first time death truly affected me.

	I was thirteen years old.

	Also during the time, I became diabetic.  I had been on cyclosporin as an
immunosuppresant, but it was becoming less effective.  I was switched to a
drug being tested by the FDA called tacrolimus.  Tacrolimus and prednisone,
another drug I was on, both have the possible side effect of unstable blood
sugar levels.  That, combined with my family history of diabetes, was enough
to put me over the edge.  I was the third person in America to become
diabetic on tacrolimus, and I was the first of a very small minority to keep
the diabetes permanently.

	Finally, the doctors gave up hope on ever getting this first liver to work
properly, and put me back on the list for a transplant.  One week before the
second anniversary of my first transplant, I had my second one.
I can still remember the doctor coming to tell me a donor had been found.  I
had a corner room, and could see all the way down the hospital corridor.
The doctors always visited in a group, but this time it was just one guy.  I
knew what he was going to tell me, but it was still a heavy shock.  A donor
had been found, and I would go into surgery in about eight hours.

	I was given a shot of morphine to calm my nerves just before I was taken
down to the operating room.  That was one of the most vivid experiences in
my life.  There were no hallucinations, just a perfect peace, and a slight
light-headedness.  Then came the few seconds I was on my back, strapped to a
gurney, going down several floors on a fairly fast elevator.  It was kewl.

	I woke from the anesthesia before I knew I had fallen asleep.  My hearing
came back first.  I could here everybody talking post-op stuff, and I could
feel them putting in IV's and whatever else they do.  No pain, just some
light pressure.  There was this sound that scared the hell out of me.  At
the time, I thought the OR team was doing pre-op stuff and that I was only
partly under.  Only after about fifteen minutes did I realize that the
surgery was over.  I realized then that I probably heard the staple gun
putting in the last few staples to close the incision.

	It seemed like hours before I showed any signs of movement.  I don't know
how long I struggled to lift a finger or bat an eyelid.  I feared that
something had gone wrong and that I would be left completely paralyzed, but
with my hearing and intellect unharmed.  Finally, I was able to barely
wiggle a finger.  No one saw it, but my relief was so great that I was able
to relax and sleep naturally.

	Over the next few hours, as the anesthesia left my body, I was able to move
and feel again.  I became aware of the feeding tube down my nose, and the
breathing tube from the respirator going down my mouth.  And pain.  Lots of
pain.

	After a few days, they began to wean me off the respirator.  That is the
scariest thing I have ever gone through.  I pleaded with the staff as they
decremented the machine in several steps from thirty breaths per minute to
two breaths per minute.  My diaphragm had not flexed without aid in about
four days, and I had to fight for every breath the machine no longer made.
I didn't believe I would survive without the machine.  I managed, however,
and spent the next week or so laying in bed while the incision kept oozing
blood.  It turned out the liver was from a car crash vic in California, and
had suffered two lacerations in the accident.  The docs had stitched it up,
but one of the cuts had reopened, and I was bleeding internally.  I was
opened back up.

	The blood had clotted into a mass, which had applied enough pressure on the
wound for it to heal on its own.  The blood clot weighed 2.5 kilograms.

	After that was dealt with, my recovery was pretty quick.  There's more to
tell, but I'm concentrating on the story from my POV, and my memory of this
period is generally hazy, with weeks where I have no memories at all.  Much
of what I have related is my memories of what other people had later told me
happened and what I told them.  It's all very surreal.

Jon Capps


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