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Changes after Transplant

Transplants | Last Active: May 21, 2023 | Replies (197)

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@contentandwell

@gaylea1 You had some very severe ones. I do remember one where I was basically catatonic. I sat on the sofa like a zombie yet I was aware of most of what was going on around me. That was one of the episodes that did land me in the hospital. My hospital stays were never more than 3 days. Initially I just used lactulose but when I went to a hepatologist she prescribed xifaxan and that kept me HE free for almost a year. When I had another episode it was assumed that my condition had worsened so then I had to take lactulose along with xifaxan.
An HE episode was also the first thing that triggered the search for a cause in me. I had shaky hands, declining platelet counts, leg cramps, feeling cold all of the time before that but those symptoms were never added up with the HE episode so it took a long time (almost a year and a half) to get a diagnosis. When you had an HE episode was cirrhosis immediately suspected? I have no idea why it was not for me, but as I have said many times, I will never again rely on the local medical community to diagnose me with anything more complex than a cold.

@johnshaw That's wonderful that after having such a severe HE episode your MELD has now decreased and you are doing so much better. Congratulations on being in good shape now, I hope it continues. If the time does come when you need a transplant try to not worry about it though, it was not bad at all for me.
What have you done to improve your MELD so much?
JK

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Replies to "@gaylea1 You had some very severe ones. I do remember one where I was basically catatonic...."

@contentandwell I was also on rifaxomin which complimented the lactulose pretransplant. Yes my HE episodes were debilitating. Total memory loss. I had no idea what month, what year or what day it was. I couldn't remember my address, my phone number or any important dates. It took me almost a full year to start remembering anything day to day. Post transplant my memory has dramatically changed but limited to only 4 months after surgery. I know that I spent Christmas 2018 on the transplant ward in hospital. and went home sometime in the new year. I then was re-admitted 2 weeks later to have surgery on an artery between my heart and liver and was reopened along my surgical scar and had all my staples administered for a 2nd time. Then I had a blocked bile duct that took 4 ERCPs to implant a stent. I contracted pancreatitis 3 times and if you look it up it is the most painful thing to endure. I was on morphine, tramadol, and other painkillers which I cant remember. It's been a trial to say the least. Today I had a cancerous skin lesion removed from my arm (which developed post transplant) by the plastic surgeon. Pathology results pending. Yes I'm grateful still. I'm alive and soon I will be close to recovery. My one year anniversary is Nov 28th.