Subject: Re: To all liver recipients
From: glhurst@onr.com (Gerald L. Hurst) 
Date: Feb 28 1996
Newsgroups: bit.listserv.transplant

In article <TRNSPLNT%96022616581729@WUVMD.WUSTL.EDU>, Lou
<LBUSHFIE@vm.cc.purdue.edu> says:

>Because of my slow decline, every day is a new adventure
>because everything happens in slow motion.  My local GI
>doctor is puzzled (and delighted) that so far I have come
>through everything so well.  I had two esophageal bleeds
>(from varices) about 6 or 7 years ago.  The varices were
>sclerosed and I have had no problem with them since.  I had
>an attack of what was called by one doctor a splenic
>infarction, but they were never sure about that diagnosis.
>That happened about 3 years ago.  I was in the hospital for
>several days in great pain (thank you, demoral) and it went
>away and has never recurred.  I had a major attack of
>ascites in the summer of 1994 and that has been kept under
>control with medication.
>
>As I mentioned, every day is a new adventure.  Within the
>past several months I have had several things occur which
>aren't listed as side effects in any of the literature I
>have read, so I thought I'd go to the horse's mouth so to
>speak, and ask those of you who are liver recipients.
>
>Did you have vision problems?  Someone in this group
>mentioned night blindness the other day.  I don't have that
>problem exactly, but in low light levels -- like at dusk and
>in a dimly lit room -- I have some problems seeing.  It's
>not particularly bad, but it is certainly annoying.
>
>Did you have problems with manual dexterity?  I have trouble
>turning pages in a book.  For someone who reads as much as I
>do, this is extremely frustrating.  I went to change a roll
>of toilet paper earlier today, and simply couldn't get the
>roller out of the holder.  My typing is also not what it
>was.  I have been blaming this on my age (fast approaching
>60) and my osteoarthritis, but from what I've heard from a
>couple of you, it's a symptom of the liver disease.
>
>As the encephalopathy got worse, did you have to have
>someone staying with you all of the time?  This is
>troublesome for a number of reasons.
>
>I'd appreciate hearing from all of you on this.  You can
>either reply directly to me or via the list.  I'm sure
>others will be interested in your replies.
>
>Thanks a lot,
>
>Lou


I shared these symptoms. My ascites came first and for a very
long time I thought I was simply getting fat and layed off
alcohol and rich foods to no avail. As my health deterioarted
over a period of at least a year, the ascites became worse and 
worse. The diuretics helped for a while, slowly dropping my
weight by forty pounds, but then the climb began relentlessly
again as I continued to weaken.

Finally, the esophogeal varices hemmorraged and I was choppered
to the hospital where I somehow survived but was shortly assured
that I would die within a very short period and they sent me home
to do so. I was now so weak that I could not stand without the
help of one or more of my sons. In this period I could not see
well and my vision remained dodgy throughout my prolonged illness.
I suffered from extreme edema and had constant cramps in my hands
which prevented me from turning pages on many occassions. My
hearing had gone bad during the early stages of the ascites- like
being under water - and remained so for a very very long time.

Fortunately for me, my youngest son (adopted) became a fireball,
found me a GI we had never met who actually made a house call, 
where he looked at this dying physical wreck and said he thought
he could help sponsor me for a transplant. My fireball son set
up an appointment for me to interview at Baylor, then arranged 
an assisted flight for me (oxygen, a nurse and the like) and
accompanied me to Dallas.  I was dying, rapidly. 

By some miracle we convinced the committee that my hide might
be worth saving. They admitted me and immediately drained 18
liters from my peritoneal cavity. God that felt good. 
Unfortunately, I was now too sick with an infection and pneumonia
(and. of course delirious) for a transplant.

Then the clouds parted - ten days after I entered Baylor, the
infection subsided just as suitable liver was found in Atlanta.

I spent the next five months in the hospital, in and out of
the ICU, underwent 6 lavages (Cut open and vacuum the 
abdominal cavity). I had contracted one of those hospital
bred bacterial infections which resist all known antibiotics.
I wanted a zipper. Then another stroke of luck. We got a drug
company to send us two experimental new antibiotics. The 
first failed its laboratory test against the germ, but the
second one killed the little buggers in the petrie dish. Oh
boy was I glad to sign the waiver and become a guinea pig.
The drug worked!

During most of my stay I couldn't eat, I couldn't stand without
help and I weighed 155 lbs with my barrel chest and 6'4" frame.
It was a chore to try to hold a cup of milk steady.

My mental capabilities were nil all during most of these months.
I would test myself twice a day when they weighed me to see if
I could mentally convert kilograms to pounds - usually I couldn't
and thereby knew that I was not the brightest guy around. 
Intellectually, I knew who I was, but my self-image was of a
faceless being at best - a mop of grey beard and hair. More
often I saw myself as a polyp of some sort, a sort of truncated
stump.  The worst period was immediately before my transplant
when I nearly convinced them, and did convince the head nurse
that I had changed my mind. Truth is - I swear I thought I was
in Latvia/Lithuania and they were KGB agents whom I had to 
fool into letting me go.

Talk about needing supervision. It was a long time before I
could sweet talk them into untying my wrists. 

Going back to the time between hospitals before the Tx, yes,
they usually got someone to watch over me when the family
went out.

I guess the last point that might interest you is my age. I'm
nearly 59 and I got my liver a year ago last July 14.

I've got a cold now with an earache and a little congestion.
It feels wonderful. I can eat nails, need to go on a diet,
and love to go hiking in the woods. 

Yes and I've got some of my brain back. I've been in court a few 
times as an expert witness and been been deposed a few times in the 
last year and was able to give the the young cross-examiners a run 
for their money.

By the way, I am a chemist, Ph.D,, Cambridge and you may smile to 
hear that I hold the patent (now expired) on those silver heliun 
balloons you sometimes get in the hospital that say "Get Well Soon." 
I hope that all of you awaiting a Tx do precisely that and darned 
quickly.

Jerry