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University of Pittsburgh Physicians
Division of Transplant Surgery
Dr. Fung answers Moe's question regarding transplant list. Dr. Fung will be one of our guest speakers at our PBC Conference 2000.
From: Reynolds, Maureen.J
Sent: Thursday, March 02, 2000 11:57 AM
Subject: liver and liver transplant
Dear Dr.
I was given your transplant page by one of my fellow PBCers (Primary Billary Cirrhosis sufferers)What an informative site you have.
My question is:
When does one who has PBC get listed on a transplant list?
Are Biopsy's always on the mark as to what stage a person is in?
I suffer from PBC Stage 2 and live in Upstate NY. Is it possible to be listed at other hospitals or does one need to be within a certain distance of the hospital?
Thank you for any information possible.
Answer
From: Fung, John
Sent: Friday, March 03, 2000 8:19 AM
To: 'Reynolds, Maureen.J'
Subject: RE: liver and liver transplant
As you know, Primary Biliary Cirrhosis, PBC, is thought to be an autoimmune
liver disease, which is more frequent in women, whose course is variable,but generally lasting many years. Some develop complications within a few years, other live with the disease for 25-30 years. It is not understood what factors affect the rate of developing life threatening complications.
As with other liver diseases, the complications relate to portal hypertension and inability of the liver to function normally. This is manifest by: esophagel varices and ascites (fluid in the abdomen) due to portal hypertension, confusion or encephalopathy due to inability of the liver to clear toxins, itching or pruritis due to inability of the liver to excrete bilirubin and bile salts, and weakened bones or osteoporosis due to the inability of the body to absorb calcium.
Once a patient develops enough of these problems, then one should be considered for transplantation. A rough guide for being put on the waiting list can be determined by a scale known as the Childs-Pugh score. It takes 3 biochemical measurements, serum albumin, prothrombin time, total bilirubin and 2 clinical measurements, presence of ascites (fluid in the abdomen) and encephalopathy (confusion). It assigns a number of points to various levels of derangement. The more points you have, the worse the liver disease.
The minimum number of points you can have is 5, the most is 15. The greater number of points, the more likely that you will develop complications, including life threatening complications.
It has been determined that a minimum of 7 points is needed to be even listed on the transplant list. This is because lower scores than that are not associated with a significant risk of dying. Nevertheless, if there are extenuating circumstances, someone can be listed, however this must be approved by a special committee. Even if one meets the minimum 7 points for listing, they can only be listed in the lowest urgency catagory, i.e.Status 3.
As one's liver disease progresses, then he/she will get more points and can move to the next level, i.e. Status 2B, when the Childs score reaches 10. To get to the highest level, Status 2A, one must be on life support and in the ICU. Obviously it would be best to get a transplant well before this happens.
The best advice that I can give you is to have close followup by your hepatologist/gastroenterologist and keep your transplant program notified of any changes in your condition. If you have any further questions, please do not hesitate to let me know.
Sincerely,
John J. Fung, MD, PhD
Professor of Surgery
Chief, Division of Transplant Surgery
