Liver transplant - Let's support each other

Yes I can relate. I was light headed and dizzy most of the time but several other symptoms were a lot worse. My MELD was 34 when i was 16 months on wait list. I received my liver 17 months in from being on the wait list. I was very ill the year prior to diagnosis. My transplant was Nov 28 2018. I'm still light headed but thank goodness the worst symptoms are all gone.

@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.

The doctor told me not to drive since I was impaired. I have been dizzy since my ammonia levels went up. My own ammonia levels were so high that I had to go to the ER.

@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

@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

@contentandwell , my first doctor was a GP and was of no help. I looked for a liver specialist in my HMO network and found a liver surgeon who was the only liver specialist in network in my area. I asked for a referal to one of the transplant hospitals near me. My primary and liver doctor went back and forth deciding who would write the referal for a transplant evaluation. On my second and last meeting with the liver surgeon he telephoned a liver transplant surgeon at Cedar Sinai. I had a phone number and a name of a transplant surgeon when I entered the hospital at MELD 40. I gave the name and phone number to the attending nurse who them gave it to the department that found a open bed a Cedar Sinai. However, it was luck where I ended up because my condition was such that I would get the first bed that opened up at either UCLA, SC. USC Transplant centers. In hind sight I I credit wishful thinking and many prayers by my lovedones. My illness was ten years long.I was used to the illness and could have gone in either direction. My family made the loving choice to keep me around. The vote was 3-0 yet my vote didn't really count. I was tired of being sick and had planned for either outcome. The unknowns were disconcerting until I finally gave up trying to control the situation and trusted my doctors and my faith in the future. It all turned out OK.