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Liver transplant - Let's support each other

Transplants | Last Active: 1 day ago | Replies (1572)

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@kltchrmn

@jim1208
I’m at Mayo Rochester. I just started year three on the list. My MELD has been all over the place from my current 11 to 26. At my last check up my doctor stopped my driving due to “overt signs” of Encephalopathy. I have been on medical disability through my employer since January 2nd. Luckily I live in the twin cities and attend a weekly support group for people pre- and post-transplant at the U of M. A little harder now I’m not allowed to drive. I have no idea how long it will be before I’m eligible for transplant.

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Replies to "@jim1208 I’m at Mayo Rochester. I just started year three on the list. My MELD has..."

@kltchrmn my license was suspended Dec 2016 for the same reason. The doctors just signed the forms today to reinstate my license at our ministry of transportation. I lived in a fairly rural area - no buses and taxis were expensive to get into the city. I was literally imprisoned at home all that time. Got pretty lonely stuck in the house day after day, month after month and being ill and waiting for the "call". I can't wait to get my license back!

Interesting to me that your Doctor diagnosed encephalopathy without a blood test. I had one incident that scared me. I was due for a parasytethis and my temperature went up to 106. I had a momentary black out. Wrote memory took over and I made it home. That day I went in to get drained and they tested for haptic Encephalopathy. Negative. Must have been the fever. Has anyone made it to Meld 40 without being on the transplant list?

@kltchrmn, Waiting for a transplant is a true test of patience. I think that you are most fortunate to be a patient at Mayo. And you are fortunate to be so near to a support group! I live in Kentucky, and there is no support group here, I felt completely alone when I was developing liver failure. I was flown to Mayo from ICU where I did live for a while and receive my transplant. When I returned home afterwards, I began looking for someone to talk to, that is when I found Mayo Connect.
@kltchrmn, What kind of things do talk about in a support group?

@jim1208 You are having HE at a MELD of only 11? I didn't know that could happen. The thing that brought my cirrhosis to the attention of my doctor was an HE episode. It still took almost a year and a half to get a diagnosis despite having other symptoms such as lowering platelet counts, shaky hands, edema, and chills. I was then sent to a hepatologist and she immediately prescribed xifaxan. I was on lactulose. I didn't need lactulose for almost a year while on xifaxan but then as my cirrhosis progressed I had another HE episode so had to resume taking lactulose along with xifaxan.
I was very lucky. When I was not having an HE episode my cognitive abilities were not affected at all. I was dreading that day that they take my license away but it didn't happen. The last summer prior to transplant I told my husband that I didn't want to have drive far myself. I always either woke up having an HE episode, or had warning symptoms. I would get a bad stomach ache. If I was out and my stomach hurt I would immediately head home. Sometimes nothing further happened but better safe than sorry.

@luckonetj I was in the hospital due to an undiagnosed HE episode when the neurologist suspected that it was my liver so that was when they tested me for ammonia. I had been sent to a neurologist because it was thought that the confusion episodes were neurological, but of course they were not.
How could a person get that high a MELD without being on the transplant list? I thought when it hit a certain number that was when you were put on the list. Mine was in the teens when I was put on the list and fortunate to get transplanted at MELD 28. I was due for my MELD to be increased at the end of the month and I am sure it would have been in the 30s at that point. I had really gone downhill.
JK