waiting transplant

I have been on the transplant list about a year now a few months ago I was admitted with encephalopathy my amonia (ammonia) was 420 I didn;t wake up for about 2 day's............after that happened I was very high on the transplant list
at the hospital even being called in 2 times for transplant but both times didn't get the liver..............when I was sick in the hospital my meld score was 22-24 after getting out my score dropped to about 16 and thats where it stayed to date............this dropped me lower on the list.......what I don't understand is I am getting sicker with less energy feeling like I want to vomit and basically not being able to do much of anything...........I am very sensitive to encepholopathy getting it frequently and ending up in the hospital ....the doc's took me off some of the meds I was taking and that helped because I haven't had an incident for about 2 months.........and theres another thing I am gaining weight because I cant excersize but I eat like a bird....they told me if I gained to much weight the surgeons won't operate if a liver comes along.......all of this is worrying me...so how can I be getting sicker and my meld score is down I don't understand?

[Thomas D Schiano, MD]

unfortunately this is the reality of the MELD system in which encephalopathy does not really confer any priority.  You may need to consider a live donor. it is paradoxical that you have to get sicker so as to get a transplant but we have to work within the system. you must make sure that you are developing ascites as the cause of your weight gain.

[gilmane]

I went through the process of a living donor liver transplant, ten years ago,  because my health complications did not add to my  priority for a cadaver liver, but were killing me just the same. I found it very difficult to discuss the subject since I knew nothing about it from the viewpoint of the donor.  Just recently the New York Center for Liver Transplantation released a new booklet on what the live liver donor can expect during the process . The information is from individuals who have donated a portion of their liver to a loved one.
For the past three years, they have surveyed individuals who donated in New York State about life after living donation. The forty-four respondents included spouses, siblings or children of the recipients. Parents, friends and other relatives also gave information.
In their own words, it is what these donors said about:
• The Surgery
• Recovery After Donation
• Costs of Donation
• Employment Issues
• Life After Donation
It can be found on the internet at: http://www.nyclt.org/living_donor/index.php
Hopefully this can be of some use. Good Luck