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DiscussionLiver transplant - Let's support each other
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Replies to "@jim1208 I’m at Mayo Rochester. I just started year three on the list. My MELD has..."
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
@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!