Walter Payton - Liver Transplants

[Guest guest]

By now, many of us have heard about the untimely and sad death of Walter

Payton. His death will be disturbing to many of us, not only because he

was so young and it came so soon after his diagnosis (or so it seemed) but

we have to wonder how it could have happened.

The news reported that he was on the transplant waiting list at Mayo but

was taken off two weeks ago because he became too ill for transplant.

This raises many questions in my mind. I read the UNOS rules that Joanne

posted the other day and tried to tie them into the procedures that appear

to have followed regarding my own placement and subsequent removal from

the transplant list. Something isn't adding up but I'm not sure what it is.

In November 1997, following a biopsy, I was diagnosed with stage IV

cirrhosis. The biopsy report said " stage IV - scale of I to IV " . To me,

that sounds as bad as it gets. I began Prednisone therapy immediately but

didn't start taking Imuran until February, as I recall. I was very sick,

no doubt about it.

I've read my own medical records from the transplant center. Each

specialist who saw me approved me for transplant eligibility. I assumed my

name had been placed on the transplant waiting list with UNOS.

Over the months that followed, my condition began to improve but I was

paying a high price for taking the same drugs that were bringing about my

remission, though I didn't know it at the time. I'm clear for many of the

harmful effects of the drug but my triglycerides are very high and there is

now a " prominent fatty pad " around my heart. I've developed osteoporosis

and will soon be tested to be sure that something even more sinister isn't

going on with my bones and joints. If the bone and joint problems continue

to escalate, I'll be a complete cripple with an intact liver. Small price

to pay to avoid transplant, or is it?

I haven't had a second liver biopsy. I'm assuming that the cirrhosis still

exists. It's even noted on ultrasounds and CT scans, though I didn't know

cirrhosis showed up in those kinds of tests. But by golly, my labs are

stable except for GGTP and a couple others that I'm told are " not

significant " .

Not so many months ago while I was talking to my insurance company, they

commented that the transplant center had never submitted the data they

needed to approve me for a transplant. I " assumed " (again, making an ass

of myself by taking anything for granted) that this merely meant that the

transplant center had been slow to submit the data. I also " assumed " that

my name had been submitted to UNOS as a candidate.

Then, I got a call from my insurance company and they told me that my name

had been taken OFF the transplant list because of my remission. This

worried me. My liver is still bad, I just don't have elevated labs. Any

guarantee it will stay that way? And, did this mean I would lose my

" place " on the transplant waiting list?

I called the transplant center and asked what was going on. After several

phone calls and much hemming and hawing, I got a call from the transplant

specialist and he informed me that my name had never been submitted to

UNOS. Further, because of my remission, they weren't going to submit

it. So, I pointed out that I'd been very sick and in end-stage liver

disease once, so my obvious question was, 'what happens if I begin to

deteriorate again?'. I was assured that if that were to happen, I would go

right to the top of the list and if I needed a liver, I'd get one.

Okay, I don't know a lot about transplants but I do know when 2 + 2 doesn't

add up to 4.

From everything I've read, I've gained no status at all on the transplant

waiting list. I am basically strong and I think fundamentally

healthy. This is on my side. But, so was Walter Payton at some point. I

realize he didn't have AIH, but he was under treatment and nothing could be

done to help him.

By UNOS standards, in late 1997 and early 1998, I was sick enough to be on

the official transplant list. But I was never placed on the list, it now

seems. My question has to be, " why " ? And, what do I need to do

next? Start all over someplace else? I think that my transplant center

has failed me and I hope that the price I pay won't be too high.

I'd be very interested to hear other opinions on all of this. Don't anyone

worry, I won't just let this go. I'm a real bulldog when it comes to this

kind of thing and I'll go after answers until I get them, but I need to put

these pieces together so I can examine them and figure out what I'm dealing

with.

Take care,

Geri