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Liver transplant - Let's support each other
Transplants | Last Active: Dec 15, 2024 | Replies (1623)Comment receiving replies
@mostlybill @tgshomes I too welcome both of you to Connect.
Bill, how do you feel that you are not the same person? I found the biggest difference for me was a huge amount of gratitude and appreciation of virtually everything. I don’t think those differences really define me though so I have not had a difficult time. My transplant was in September 2016.
@tgshomes your parents are very fortunate that you are so concerned and want to be able to understand better what they both are going through. The “mind cloudy-ness” that you refer to is of course hepatic encephalopathy, or HE. It varies a lot from person to person, mine was not present always but rather in episodes during which I was irrational and sometimes somewhat confrontational. When I saw a hepatologist she put me on xifaxan and I had no HE for almost a year. When they resumed it was assumed it was because my liver had deteriorated further and I had to start taking lactulose also. When I did not an HE episode I could live my normal life. My episodes were sometimes brief and going to bed for a while would cure them, but the worse ones put me in the hospital for two or three days.
Please feel free to ask anything and if it’s something that I or someone else has dealt with we are glad to explain.
JK
Replies to "@mostlybill @tgshomes I too welcome both of you to Connect. Bill, how do you feel that..."
Thank you for your reply! And thank you again, my parents are awesome people and my Dad and I are very close. We run a custom home business together which I have taken on my own, and sometimes I feel like all I want to do is call him and ask him a question, but he literally is so brain fogged, that he can't even get a simple sentence out some days. Other days he is pretty alert and he can talk and have a conversation, but other days he is weak and frail. He is on both Lactalose and Rixfixin (SP) and I am not sure if it is going to get better or worse. He pretty much just sleeps all the time and his appetite is non existent. Anything to help the HE? Does it get better over time with the medicine? Also, with the tiredness and loss of appetite?
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Changes? These seem small, yet add up to a strange feeling. I lost most of my muscle mass after an active life. My hands are not my hands anymore--there are no calluses or dirt under my nails, no cuts or splinters. I now have high blood pressure, which I did not have before. And I feel drugged all the time, not in a clear state of mind as I was before transplant. While I know many of these things are resolved with time, these obstacles are difficult now. I notice other small things every day, feelings I never had--things hard to describe or define. It has been difficult getting back to my usual daily schedule as well. Setting goals has also been a challenge, I think mostly due to drug side effect draining my energy and fogging my mind. I am blessed with a wonderful, caring family who sustain my efforts to recover and inspire me to be better.