My husband was given his current meld number and he is 5 points away from being eligible for a transplant. I would love to know everyone's experience in this process. Once you became eligible how long did you have to wait for a donor?
The number does tend to bounce around quite a bit. The length of time for a liver depends a lot on where you live. I live in Silicon Valley/Bay Area in Northern CA and there is a very long wait here. It is called the Tylenol capital because of all the transplants that they attribute to Tylenol use. The weather is so good here, that people work out year round and then take Tylenol.....
Does he have any encephalopathy? Is he having to use Lactulose? How is his overall health besides the PSC liver damage?
How is his ascites? Is there more fluid now than before?
It is so hard to be that family member that supports the PSCer. Keep your spirit and faith up and ask for support from family and friends if they are willing to help!! Take care
Dear Shane,
The MELD# qualifying one for transplant is not fixed around the country. Some centers will transplant a 20+ score, others may be closer to 30. The main determining factors are how many people have his blood type that are higher on the list, how long they have been on the list, and the number of cadaver livers that become available. Also, some regions have historically shorter wait times. In addition, if some one below you on the list gets worse very quickly, they may leapfrog over you.
For my transplant I waited about six weeks. My MELD score was over 40, but no livers became available for a few weeks.
Stay Strong!
EAD3
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Hello, Shane. Did your doctor talk to you about petitioning for additional points?
I am interested in how petitioning for extra points works. Can you direct me towards a good resource for that info, Gloria? Thanks.
While I am pre-transplant, I have just been listed and was told that there are 150 people in front of me.. I know that there are people who have been on a list for years, and some that are on it for a very short time. There are a lot of variables affecting how long a person waits.
For example, another transplant center nearby has a list of 100 patients. That makes me do some thinking, but I have been told there is a high degree of cooperation between the two centers.
Shane,
Hi. Just read your post from the end of last year. To answer your question though, I was listed in January of 2015 at a MELD of 12. In June it went up to 19. I had my blood tested on July 20th this summer and my MELD had shot up to 35! I was then at the top of the transplant list at Duke Medical Center. They checked it again on the 21st and it was still there. Then on July 22nd just two days since it had gone to 35 I received a call that they had a liver. I now am 9 weeks post-transplant with a 22 year old liver in my 51 year old body. What a wonderful gift of life I have received. I wish you and your husband the very best in getting listed and transplanted. You never know, you may not have to wait too long, it all depends on how sick he gets before transplant. I just hope and pray he can avoid any infections prior to transplant as they will not transplant you with an active infection. I was so blessed in this regards. Keep in touch and give us an update if you wish.
Mark