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Liver transplant - Let's support each other

Transplants | Last Active: 1 day ago | Replies (1566)

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@jim1208

I can sleep them off. I definitely feel like I am losing my mind. Always dizzy and lightheaded. My right hand has started shaking some now.

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Replies to "I can sleep them off. I definitely feel like I am losing my mind. Always dizzy..."

@jim1208 My shaky hands started long before I had HE episodes. At the time the doctor I went to said they were essential tremor, but since they no longer shake they were definitely from cirrhosis.
The hepatologist I went to after being diagnosed said I probably had cirrhosis for about 10 years, it takes that long for symptoms to really become apparent. During that time not only did I have shaky hands but my platelet count was dropping more and more. I was going to a hematologist for that and he diagnosed it as Immune thrombocytopenia (ITP). That generally causes bruising though and I did not have any unexpected bruising, just what is typical. I was also diagnosed with diabetes during that time, another tie-in with cirrhosis.

@kltchrmn Interestingly, I also had norovirus during my wait for a liver transplant. Coincidental? I still have some difficulty with word retrieval but I attribute that to getting older.

@luckonetj I was pretty good with HE before my transplant. I was on both xifaxan and lactulose and that seemed to keep me cognizant. I did have a hospital stay at one point in July but that episode was short-lived. They must have discharged me too soon though because I was home for one day and then back in the hospital for a day. I never got talkative, just the opposite. I became withdrawn and one time when I had a really bad episode I was almost catatonic. I actually remember that well. It was like I was a spectator to what was going on around me.
I live in NH and there are no liver transplant centers here. I am only about 55 miles north of Boston though so when I was finally diagnosed I went to a hepatologist there, at Mass General Hospital. She was great as are all of the transplant doctors. I feel so fortunate to have them so close by. There are two hepatologists in NH, up north at Dartmouth-Hitchcock Hospital.

@gaylea1 More exercise certainly cannot hurt. So, your doctor has not indicated if this is typical, and hopefully temporary?

@livertrex I too had malignant lesions in my liver from cirrhosis. They ablated them but there was still a trace when they dissected my liver after transplant so now I have to go for yearly MRIs. I never had fluid removed. I had no problem with it until about a month before I had my transplant. At that point I felt like I had a barrel around me. I had lost weight and thankfully saved my older clothes because otherwise I would have had nothing to wear. I did have off and on problems with edema which also got very bad shortly before my transplant. I could not get any shoes on my feet, just slippers.
JK