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Liver transplant - Let's support each other

Transplants | Last Active: 1 hour ago | Replies (1567)

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@contentandwell

@stella25 After a few HE episodes, two which landed me in the local hospital, the neurologist (my PCP thought I had a neurological problem) suggested that he thought the problem might be my liver so they tested for ammonia, which was high so they put me on lactulose. I then had a CT scan which confirmed the cirrhosis diagnosis. I was on lactulose for a couple of months until I was able to get in to see a hepatologist at MGH (Mass General Hospital). The hepatologist prescribed xifaxan, and I was able to discontinue lactulose.

Lactulose did not entirely control the HE episodes but it was better than nothing. I would have to look back on the dates but I think it did keep me out of the hospital for a while. After getting on xifaxan I had no HE episodes for almost a year, then I had another one. We thought it was because of "the perfect storm" as my son dubbed it because a number of things had happened that can lend themselves to increasing the odds of an HE episode -- a very difficult ablation, followed by norovirus, and probably not holding my medications down due to the norovirus. So at that point, I had to resume taking lactulose along with the xifaxan. I guess the doctor was right, that the HE episode happened due to my cirrhosis progressing, because I then had another in the summer even though I was on both medications. If you have any other questions about it, please just ask. If you would like I will look up exact dates of when the various things took place.

Thank you for your good wishes, I wish you the same. I hope your son is able to get through without the HE episodes. To me, they were the worst thing possible. If he does get them, please remember he is not in his right mind when he has one. Some were not too severe, and I could go to bed (they always made me tired and gave me a stomach ache) and wake up much better, just sort of fuzzy. The more severe ones left me totally irrational and difficult to deal with. Even now I get tears in my eyes just thinking of how I was. The strange thing is that I actually recognized at times that I was irrational but I couldn't help myself! Except for a couple of the severe ones that landed me in the hospital I have a pretty good recall of them, and how irrational I was. One time I even tried to hit my husband which is so unlike me. That was before we knew that I had cirrhosis so we had no idea what was causing this behavior. My daughter happened to be there and for a long time I felt like she was somewhat hostile to me, even after it was discovered that when I had these episodes I was not of my right mind.
JK

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Replies to "@stella25 After a few HE episodes, two which landed me in the local hospital, the neurologist..."

Oh my, I'm so sorry you had to go through those episodes. How scary for you & your loved ones. There was another medication my son's hepatologist considered but I don't remember what is was. Could be the xifaxan you were taking. It was during that office visit they discovered he had a blockage in the bile ducts and was admitted to the hospital for an emergency ERCP. They decided to hold off on the HE meds for now. He will have a follow-up ERCP in two weeks and we will readdress it at that time.

Hi, thank you for sharing your story. I’m happy you have a second lease on life, too! My husband threatened physical violence and gets very moody etc. due to HE. I did not know that was the cause until his hospitalization. He is pre-lover transplant (just approved Friday) with MELD around 35 and I wanted to ask if since the transplant you feel like “yourself” again? Have you had any HE episodes since your transplant? I’m very concerned of it becoming permanent/recurring after transplant. I hope to hear your experience.