Question about Transplant Listing

[Guest guest]

Hello all,

I have been a member since my dx in 2004. I mainly lurk and

ask questions when I hit a bump in the road. I have recently had 2

cholangitis attacks in the past 2 months. I had 2 last year. Other

than that, I have been doing pretty good with only fatigue and some

itching. During my recent hospitalization the GI docs suggested that

I meet with a Transplant team and talk to them about my options. (

This last attack has had a much longer recuperation period for me. In

the past I was out of the hospital in 1 1/2 -2 days. This time I

stayed for 10 days) They felt my PSC was progressing. They gave me a

MELD score of :13. Well, this took me completely by surprise and

scared me greatly. I met with my Liver Specialist last week and he

did not give me the impression that he felt the same as the other

docs. He said he felt my MELD was skewed due to the Cholangitis and my

Bilirubin being elevated. When I don't have cholangitis, my Bilirubin

has been normal. He talked to me about the success rate/failure of

transplant; rejection; and a lifetime of anti-rejection drugs. He

asked me what my quality of life was before my latest cholangitis

attacks. My husband and I both agreed it was about 80 on a 0-100

scale. He said I needed to think of that as well. So, now I am

really confused. I have read that it is better to meet with the

transplant team and go through the whole process when you are feeling

well. However, I don't know anything about the process or what

happens once you have met with them. DOES IT MEAN YOU ARE THEN

LISTED?! Any info would be greatly appreciated as always. Thanks so

much for your time and God Bless you all! Some info about me: soon to

be 43 year old wife and mother of a very active 4 year old son who is

the light of my life-living in the suburbs of Atlanta. Thanks,

Chris

[Guest guest]

> ... I don't know anything about the process or what

> happens once you have met with them. DOES IT MEAN YOU ARE THEN

> LISTED?! ...

No, getting a transplant evaluation does not lead automatically to

being listed for a transplant. You must agree that you want a

transplant and are ready to accept it when it is offered. The

transplant team must also agree that you are a viable candidate for a

transplant with no conditions that would be counter indicative of a

transplant and that it is medically advisable for you to get a

transplant rather than wait.

A full evaluation will involve testing your heart, imaging the blood

vessels supplying your liver, interviews with social workers to

evaluate your mental state and support network, discussions about

financial resources and health insurance needed to pay for the

transplant and post-transplant drugs, and other tests which your

center may require (such as dental clearance). Going through all of

these tests and interviews is easier when you are not feeling wiped

out by a cholangitis attack or other temporary health issue.

While your PSC is probably progressing, I would tend to agree with

your GI doc that the MELD score of 13 was a temporary spike and if

your billirubin is usually in the normal range instead of around 5

that your typical MELD score probably close to 6. A transplant

evaluation now would probably not result in your being listed. It

would put you on the tx team's list of patients to be followed.

Whether that is something you want at this time is something for you

and your husband to decide. It may also alert you to problems that you

did not know existed in time for you to take some corrective action.

As with everything you have to weight the advantages and disadvantages

and make a decision that fits with your life.

Wishing you all a happpy new year,

Tim R, 59, ltx 1998, recurrent PSC 2002