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Liver transplant - Let's support each other

Transplants | Last Active: 6 days ago | Replies (1606)
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@khh

I’m trying to hold it together and yes I’ve had trouble with HE. I have been taking Xiphaxan for almost 3 years now. Unfortunately. This is only the tip of my iceberg. I don’t think anyone knows how I’m walking around. I guess I’m very stubborn. I can’t always respond to everyone bc I’m still working full time and I fall out when I get home. Most recently my AFP began elevating.
I just want to be evaluated by someone with more experience and knowledge than the NP I’m seeing. Thank you for your prayers!

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beckyy39 | @beckyy39 | Feb 26, 2020

I've been hospitalized twice for HE but haven't had further issues once I was put on xifaxan 2 x daily and lactulose. I wasn't aware it was happening and was driving in that condition. When I had coworkers, clients, and my son notice strange behavior, I was sent to the ER and my ammonia level was near 90. I didn't even know my name, address, or even that I was at the hospital...I have never been so scared, so my heart goes out to you. Fortunately my eval visit starts on March 10 and it is about 100 miles to Mayo Clinic in Jacksonville from where I live so my 17 year old son (caregiver) and I will be in a hotel that whole time and I hope the process is smooth...have had a very hard week.

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JK | @contentandwell | Feb 26, 2020

@khh. It sounds as if you are staying strong, that’s admirable. To me HE was the most miserable thing, I still get tears in my eyes when I remember the more severe episodes. I was very fortunate that I wasn’t working.

@beckyy39 as I mentioned the xifaxan kept me HE free for a long time too.

I hope the eval goes well and produces good results, and that you will update us. I feel such a bond with those of you going through the process and who have HE. I think only those of us who have “been there” can understand completely.
Hugs to both of you.
JK

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