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Transplants | Last Active: Oct 24 12:37pm | Replies (445)
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@contentandwell My diagnosis came with the bad HE episode in Nov 2016. I had to wait 6 months to be placed on a waiting list. That was done June 2017. My MELD was only 25 then. Now just above 30.
I had the opposite experience with my hospital experiences. The nurses were awesome and the PWs were gentle and caring.
I take lactulose (does everyone hate that stuff...yuk) and xifaxin. Definitely helping. No more lactuose will be welcomed with open arms. For my stomach I take domperidone, lansazporole and Zantac. For edema furosemide and spironolactone. Trazodone for sleep. A real chemical cocktail daily.
Thanks so much for sharing with me.
Replies to "@contentandwell My diagnosis came with the bad HE episode in Nov 2016. I had to wait..."
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@gaylea1 Ahh, I was confused because you said the HE episode was in November 2017 - a typo.
My hospital experiences in my transplant center were great, it was my local hospital that really was not, and I have heard other people not be happy with that hospital also. There are two local hospitals and my husband's doctor is at the other one so should he ever have to go in he will go to that one, I will go to Boston to my transplant hospital.
I was given something for my stomach but it really didn't help much and it totally knocked me out for a full day! I never had problems like that before but when your liver is not functioning well it does effect medications. I was more miserable with the nausea medication than I was without it.
Near the end, I was also taking furosemide and spironolactone. They helped some but then, as I am sure I have mentioned, I gained 35 pounds of fluid and nothing helped -- or maybe it did and without it I would have gained even more. It was horrible.
It's a blur to me a bit, which is why I wish I had kept a journal, but I don't think I waited that long at all to get on a waiting list. When I was listed my MELD was 18.
Please do keep us informed, it's always so wonderful to hear of some one we "know" who has also come through this miserable journey and is on the other side finally.
JK