Re: Meld? and Getting Listed/everyone's right...

[Guest guest]

> The real reason Shauna (and many others) didn't get transplants wasn't

> some real or perceived bias in the system, but the organ donor shortage

> in general.

But wait, you're both right! My transplant team also stated that

people who have PSC complications other than cirrhosis have lower

chances of getting a cadaveric transplant under the MELD system. INR

increases with cirrhosis and high creatinine is a renal consequence of

extensive cirrhosis (hepato-renal syndrome). While bilirubin increases

with cholestasis, it often isn't enough to rate a cadaveric liver. I

think this isn't showing up in the stats because there are doubtless

other things that increase death rates in other liver diseases,

counterbalancing those with PSC who don't make it to transplant. I

recall reading that PSC patients have higher rates of living donor

transplants, I suppose in part due to hearing it's their best hope,

which it often is. So MELD is fairer to people with acute disease

than the previous system, but not as generous to people with

life-threatening conditions other than cirrhosis.

We need to encourage organ donation, work to prevent liver diseases

from preventable causes, like alcoholism, hepatitis and acetaminophen

overdose, and find ways of treating PSC more successfully, short of

transplant.

Martha (MA)

[Guest guest]

If you've got the " wrong " symptoms and you're waiting, I don't see how

you could focus on anything else!

A friend of mine suggested I start drinking again to get cirrhosis

synched up with the blocked bile ducts- SOOO helpful...NOT.

Martha (MA)

My transplant team also stated that

> > people who have PSC complications other than cirrhosis have lower

> > chances of getting a cadaveric transplant under the MELD system.

[Guest guest]

If you've got the " wrong " symptoms and you're waiting, I don't see how

you could focus on anything else!

A friend of mine suggested I start drinking again to get cirrhosis

synched up with the blocked bile ducts- SOOO helpful...NOT.

Martha (MA)

My transplant team also stated that

> > people who have PSC complications other than cirrhosis have lower

> > chances of getting a cadaveric transplant under the MELD system.

[Guest guest]

If you've got the " wrong " symptoms and you're waiting, I don't see how

you could focus on anything else!

A friend of mine suggested I start drinking again to get cirrhosis

synched up with the blocked bile ducts- SOOO helpful...NOT.

Martha (MA)

My transplant team also stated that

> > people who have PSC complications other than cirrhosis have lower

> > chances of getting a cadaveric transplant under the MELD system.

[Guest guest]

I'm from the Bay Area, and my transplant was done at Stanford.

> >

> > I think this was my case. My MELD score was 28. Because my creatine

> > never crept up I couldn't get any higher.

> >

> > I was just about dead, so my doctor was able to get UNOS to raise my

> > MELD score to 33, and I was finally transplanted.

> >

> > This was in June 2004

>

> Wow, that's quite a high MELD! You still didn't reach the top of the

> list at 28? It's good that your doctor went to bat for you. What UNOS

> region was this? With a MELD like that some regions would transplant

> you right away. Another difficulty with the system. If you need to

> rent and apartment in another region that transplants at a lower

> average score, financial solvency affects who gets transplants too.

> Hope you are doing well.

> Martha

> 43, UC 1979, PSC 1992

>