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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Wait list statistics


#1

http://www.medpagetoday.com/clinical-context/PBCNASH/51592

PSC patients waiting for liver transplant have higher survival rate than PBC and hep patients.


#2

PBC, like PSC, is a very complicated disease and comes with its own risks. Based on a glance of stats online it seems PBC patients generally have a shorter median survival time to end stage and a greater risk of disease recurrence post transplant. PBC patients, similar to PSC patients, are at significantly increased risk of developing hepatocellular carcinoma.

It seems that research is suggesting that the MELD model is not appropriate for determining transplant necessity for PBC patients as they die of other causes before their score reaches that required for transplant consideration. It’s difficult to have a one size fits all method in determining need for transplants. I’m sure that is also true for patients with PSC to some extent. But with such a demand for livers, and that too an increased one owning to the rise in NAFLD, how else do specialists determine who to prioritise. It’s a difficult debate…


#3

Priya and Stephen,

PSC and PBC are both choliostatic liver diseases. As such, they are not accurately measurable by MELD, which is the standard used to get a cadaver liver. I am a PSC'er that received a live donor transplant in 2012. Discussion about changing MELD at Mayo Clinic had already begun when I got transplanted. I was listed in two regions for a cadaver liver. A transplant surgeon at University of Wisconsin, Madison, explained it was almost impossible to get a liver using the MELD model if you have PSC. I did not have much time left and he told me the only choice I had to survive was to find a live donor. At the time of my transplantation, it was 12 years after diagnosis. The doctors told me I had End-stage IV liver cirrhosis and about 15% functionality, but my MELD was only 16 (0= the best. 40= the worst). My transplant was done in Chicago where the average transplant took place when the patient had a MELD between 32-35.

If anyone has PSC and has been waiting on a transplant list for a long time with a low MELD number, I suggest you talk to a transplant center that does live donor transplantation. It may be your only choice. - Paul

Priya Patel said:

PBC, like PSC, is a very complicated disease and comes with its own risks. Based on a glance of stats online it seems PBC patients generally have a shorter median survival time to end stage and a greater risk of disease recurrence post transplant. PBC patients, similar to PSC patients, are at significantly increased risk of developing hepatocellular carcinoma.

It seems that research is suggesting that the MELD model is not appropriate for determining transplant necessity for PBC patients as they die of other causes before their score reaches that required for transplant consideration. It's difficult to have a one size fits all method in determining need for transplants. I'm sure that is also true for patients with PSC to some extent. But with such a demand for livers, and that too an increased one owning to the rise in NAFLD, how else do specialists determine who to prioritise. It's a difficult debate..

#4

I wonder if wait list gets shorter now that hepatitis C has a cure (expensive, but cheaper and nicer than transplant).
In the future, there shouldn’t be any hepatitis C patient waiting for transplant…


#5

Ted - Many of the Hep C patients currently listed are at the point of no return where the available cures are not effective. It will still be a number of years before Hep C drops as the largest group on the list (my hepatologist predicts 2020). Unfortunately, fatty liver is skyrocketing due to the sedentary/overweight state of health of western populations. Long term, the waiting list will likely grow longer, not shorter, due to fatty liver.


#6

From: Paul Hain <■■■■■■■■■■■■■■■■■>
Subject: Re: Stephen replied to the discussion "wait list statistics" on Primary Sclerosing Cholangitis (PSC) - Online Support Group
Date: May 20, 2015 at 2:04:30 PM CDT
To: ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■

Stephen,

Thank you for sharing that heart-warming live donor account with me. Good people step forward and help in times of great tribulation. It reminded me of how I got my live donor liver. My family is small. Only my daughter was a blood type match. She was tested, but was not anatomically a match. My daughter put my PSC story and my need for a live donor on Facebook. A childhood girlfriend (now 33 years old) living in Wisconsin, was the right blood type and wanted to be tested. She had lost her job after 10 years due to a transfer mistake. She could not find work and wondered what purpose she had. When she saw the Facebook page, she was convince this was the reason for everything.

She was a perfect match! The hospital, Northwestern Memorial in Chicago, said it would be 12 weeks before they could schedule the surgeries. I was not doing well, but if I had to wait, I had confidence I would make it. Then, the hospital had a cancellation and the surgeries took place in 10 days. We both came through with flying colors. My new liver performs like a “superstar” says my hepatologist. My donor is perfectly healthy, as well. We get together two or three times a year, and when we do, we call it our ‘liver reunion.’

To have life, when death was so eminent is a daily joy for me. I had two people from foreign countries contact us about being a donor. Northwestern Memorial Hospital recognizes there are people that want to help by donating an organ to a stranger. They have brought this before a national board of medical ethics and have now established a list of “benevolent donors.” These potential donors will be carefully screened by social workers, doctors, psychologists and means people before they can be considered. As far as I know today, they have not approved the procedure for a liver transplant, yet. But it is likely to happen in the near future.

PSC’ers, if you are on the transplant list, your doctors may not feel comfortable about discussing the odds that you will not get a cadaver liver no matter how long you wait on the transplant list. Your MELD score will most likely stay low like mine did after years of waiting. Once I knew I would not get a cadaver liver, I turned my attention to finding a live donor.

Warm regards,

Paul