Transplant story

[Guest guest]

Greetings all this holiday season!

It has been awhile since I visited this PSC list. I suspect that

there are many new visitors who are now waiting for their

transplant and I wish you all the very best. May 2007 be your

landmark year. It has been a year and a half since my brother

Dan's transplant and he continues to do well. With time behind

us I can look back and pick out some critical events that tilted the

table in our favor, increased our chances and made it possible

for us to keep our family universe intact. I can't speak to what it

was like to be the recipient of a life saving liver. My point of view

is that of a family advocate. It was much more than I expected or

had prepared for. Please consider our experience and use them

for your own benefit.

1. Pre-transplant condition

This turned out to be the most dangerous time by far. As his

health was deteriorating we did not know what critical signs to

watch for and he almost slipped away. We quickly learned that

the most significant signs of very advanced liver disease are 1.

water retention (ascites), 2. mental confusion (encephelothapy),

and 3. internal bleeding deep in the esophagus (esophageal

varices). The internal bleeding was by far the worst of these. Any

signs such as black stools must be addressed immediately. We

did not know the symptoms and early one morning Dan

collapsed and was very critical. A significant amount of blood

had collected in his stomach and his kidneys were shutting

down. They had to drain the blood and band up the source of the

bleeding. One doctor told us that he was at the edge. His MELD

score rose to 25. This episode was the most dangerous

moment of the entire transplant process. The mental confusion

came on quickly, though there were early signs such as

fogginess and heavy fatigue. Once the toxins filled his system he

had no idea who or where he was and did not recognize any

family. Lactulose syrup did a great job at keeping this under

control. The water retention had started two years earlier filling

his abdomen and requiring tapping to remove it (paracentesis).

He was tapped about every three weeks and they would remove

10 -14 liters of fluid each time. The water weight was a great

burden and a strain and caused two hernias which further

complicated matters. If you are a family member learn these

symptoms and stay ahead of them. Learn the terms and

medications as you may have to be responsible for all of them.

2. Organ shortage and multi listing

After his internal bleed event had stabilized his pre-transplant

coordinator suggested that we begin to look for other hospital

options out of state. He was on the Michigan transplant list and

when his condition stabilized his MELD went back down to 19.

With that number there were about 8 ahead of him. Meanwhile,

his attending doctor was telling us that we could not multi-list

and saying that we could not " play the system that way " . It was

very confusing to get conflicting suggestions at such a critical

time. I called the Liver Foundation in NY and spoke with

someone about multi-listing. I had called them years before

when I was looking for non-transplant PSC options. Once again

they were a tremendous help! They explained that multi-listing

was a gray area and possible though it would be determined by

the health insurance coverage. So I started " shopping around "

and called a hospital in Boston where I live. They said their

MELD scores were even higher, up to 34. They suggested

Indiana University in Indianapolis. I called them and they said

with a MELD of 19 he would be in the top 3 and could get in done

in 2-4 weeks. With that we started the process of getting listed

there. This was late February and he was not added to the list

until June 3. Insurance pre-approval, transfer of records,

scheduling tests, scheduling more tests, tests reviewed,

insurance final approval...it all took months so plan ahead. He

was now listed at both hospitals but his chances at Indiana were

much greater so we moved there, got an apartment and waited.

To summarize, multi-listing is possible. The big secret to the

transplant process is that organs are not equally available.

Some states have many more than others in proportion to the

demand and your chances of surviving will be greater there. If

you call around, hospitals should be able to tell you where your

MELD would fall on their list. Big east and west coast cities will

probably have the highest demand and longest wait. Others I

spoke with suggested ville Mayo and Madison,

Wisconsin so ask around. Hospitals want you to come, it's big

business. This is a potential $250k for them and that does carry

some weight. And it's the same when one hospital doctor

suggests that you should stay and not leave. Do whatever you

need to do to make it happen. If you need to quit your job, max

your credit cards and move somewhere do it and pick up the

pieces later. You won't regret it!

3. Insurance wrangling

After almost three months of working to get listed we ran into a

major insurance snag and it had to do with contract and payment

issues. It required great persistence to get the insurance and

hospital financial people to resolve their stalemate. Have a direct

phone contact at your insurance company in case problems like

this occur. Our insurance situation was resolved on Friday June

3. That night and the next morning Dan's condition dipped again

and we took him to Emergency. Saturday afternoon June 4, the

next day, we got the transplant. I was told afterward that if the

insurance had not approved the terms then his transplant would

not have happened. He could have slipped away because no

one was working at the insurance company over the weekend

and that would have been a cruel tragedy. The process should

not be so challenging but they hold the key. You must strongly

convey a sense of urgency to get them to act. Otherwise the

process just drags along.

4. Transplant and post

I had imagined the transplant would be the most dangerous and

risky time. It does not seem possible that someone could

survive such a radical procedure. It lasted about 6 hours, the

surgeon came out and said that everything had gone perfectly,

and that was it. I know that the success rate is not 100% and that

some will not make it but if you can keep your symptoms under

control long enough to get to the operating table the chances of

surviving are in the high 80% and that is absolutely remarkable!

Dan was 38 at the time and had been very athletic and that must

have helped him greatly. The aftercare lasted 2-3 months. The

anti-rejection drugs took some time to get used to. He had bad

hand jitters and was still somewhat confused, this lasted for at

least 5 more weeks. The other recovering patients were not as

bad though there was a range of problems with some.

PSC and transplant is a very serious matter. There is no certainty

that you will have a successful outcome. As surrounding family

members all you can do is give it your absolute best effort and

do whatever it takes to increase your chances. In hindsight I feel

that we were very lucky initially and became more active in the

process once we realized that things could get off track very

quickly. Give it your absolute best shot! May 2007 be your year.

Feel free to contact me directly if I can be of any help,

secretjflo@....