Re: Transplant Lists

[Guest guest]

Thank you for responding. I'm checking out this support-group for my

Dad who has PSC and who, I think, would benefit from talking to

others with PSC. And it's comforting for me to hear other's

experiences.

Anyway, I was under the impression that once you have a transplant,

PSC is cured. Is that wrong?

> >

> > Could someone please tell me how long it takes (on average) once

> > someone is on a liver transplant list to get a liver? I've a few

> > success stories of patients' health improving dramatically once

they

> > had a transplant, but what is the risk of staying on the list too

> long

> > and not making it because they couldn't find a match?

> >

>

[Guest guest]

>

> ... I was under the impression that once you have a transplant,

> PSC is cured. Is that wrong?

I think it probably is wrong and that PSC recurrance is just a matter

of time (whether it will be 2 months or 50 years is impossible to

predict). Reports of PSC recurrance after transplant have varied from

5 to 30 percent and higher. There seems to be a steady increase in the

percentage of patients diagnosed with recurrant PSC the longer they

are followed post-transplant. Recurrance is also higher among men who

have not had a colectomy - one can't do much about ones gender and I'm

not sure that the reduced risk of PSC recurrance would be worth having

a colectomy if one wasn't needed for other reasons.

A transplant also exchanges one set of conditions - End Stage Liver

Disease (ESLD) - for another - being a transplant patient, with the

need for constant medication and realitively frequent medical checkups

for the rest of your life. The trade off is worth it because ESLD is a

very terminal condition, and personally I enjoy life too much to make

the choice to refuse a transplant.

Tim R, ltx 4/4/98, PSC recurrance 2002