@gaylea1 I assumed that you knew your diagnosis prior to having HE because of the dates. So I guess they knew your liver was in trouble but didn’t know the cause if they had put you on the list.
You sound so much like me, having to be convinced to go to the hospital. I went to the hospital two times in an ambulance when I had HE, or possibly three. I remember the ride and hoping that none of my neighbors saw an ambulance take me out, but I have no recall of the initial time in the hospital. My episodes, even the very severe one, were over in a few days, max. The first time I had a horrible nurse, all I could think of was nurse Ratched from “One Flew Over the Cuckoo’s Nest”. I think at the local hospital they just did really know that much about HE but that’s no excuse for treating a patient poorly.
I’m glad to hear that your transplant center is such a good one. You really will be so happy when this is over and you can live a normal, full life again.
Are you taking xifaxan, lactulose, or both to control the HE? After my transplant, when I had some pain, my husband would say “no more lactulose”, I hated that so much.
JK

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