Liver transplant - Let's support each other

@oooanooo, Welcome to Connect. Before my own liver and kidney transplant, I had the tiredness/fatigue, couldn't walk far, no appetite, etc. These are some of the symptoms that can occur with liver disease and advanced cirrhosis.
Here is some information about liver disease if this is new to you.
- Liver Disease
https://www.mayoclinic.org/diseases-conditions/liver-problems/symptoms-causes/syc-20374502
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Here is a Connect discussion with members who have experience with liver cancer HCC
- Anyone waiting for liver transplant and diagnosed with liver cancer?
https://connect.mayoclinic.org/discussion/liver-transplant-6/

@oooanooo - Where is your brother-in-law in his current need/journey to a possible liver transplant? Has he been treated for the HCC and Hep B?

@katebw Do you have any information about Hep B before liver transplant?

@stella25 After a few HE episodes, two which landed me in the local hospital, the neurologist (my PCP thought I had a neurological problem) suggested that he thought the problem might be my liver so they tested for ammonia, which was high so they put me on lactulose. I then had a CT scan which confirmed the cirrhosis diagnosis. I was on lactulose for a couple of months until I was able to get in to see a hepatologist at MGH (Mass General Hospital). The hepatologist prescribed xifaxan, and I was able to discontinue lactulose.

Lactulose did not entirely control the HE episodes but it was better than nothing. I would have to look back on the dates but I think it did keep me out of the hospital for a while. After getting on xifaxan I had no HE episodes for almost a year, then I had another one. We thought it was because of "the perfect storm" as my son dubbed it because a number of things had happened that can lend themselves to increasing the odds of an HE episode -- a very difficult ablation, followed by norovirus, and probably not holding my medications down due to the norovirus. So at that point, I had to resume taking lactulose along with the xifaxan. I guess the doctor was right, that the HE episode happened due to my cirrhosis progressing, because I then had another in the summer even though I was on both medications. If you have any other questions about it, please just ask. If you would like I will look up exact dates of when the various things took place.

Thank you for your good wishes, I wish you the same. I hope your son is able to get through without the HE episodes. To me, they were the worst thing possible. If he does get them, please remember he is not in his right mind when he has one. Some were not too severe, and I could go to bed (they always made me tired and gave me a stomach ache) and wake up much better, just sort of fuzzy. The more severe ones left me totally irrational and difficult to deal with. Even now I get tears in my eyes just thinking of how I was. The strange thing is that I actually recognized at times that I was irrational but I couldn't help myself! Except for a couple of the severe ones that landed me in the hospital I have a pretty good recall of them, and how irrational I was. One time I even tried to hit my husband which is so unlike me. That was before we knew that I had cirrhosis so we had no idea what was causing this behavior. My daughter happened to be there and for a long time I felt like she was somewhat hostile to me, even after it was discovered that when I had these episodes I was not of my right mind.
JK

Thanks, @rosemarya. My son and daughter of course were not here most of the time so rarely saw an HE episode. My son did come home one time when one put me in the hospital but my worst episodes passed within two or three days so by the time he got here I was on the mend and out of the hospital. My daughter was present for one. My husband put up with the brunt of it and most of the time he was great. The husband in the couple we are closest with was a huge support for my husband. My husband called him two times when I was having an episode and he came over. One time I was almost catatonic and he told my husband he had to get me to the hospital. I was uncooperative so an ambulance was called. We were still at the point that we did not know what was causing these episodes so that made them even more frightening.
Our doctor friend suggested that it might be from one of the medications I was on because there are a number of medications that can cause confusion. Interestingly I was able to discontinue these medications and had no episodes for over three months so we thought that had been it. They then resumed though. I can't help but think that at least one of those medications contributed to causing the episodes but as my cirrhosis progressed they didn't need something else to contribute to them.
JK

Hi, thank you for sharing your story. I’m happy you have a second lease on life, too! My husband threatened physical violence and gets very moody etc. due to HE. I did not know that was the cause until his hospitalization. He is pre-lover transplant (just approved Friday) with MELD around 35 and I wanted to ask if since the transplant you feel like “yourself” again? Have you had any HE episodes since your transplant? I’m very concerned of it becoming permanent/recurring after transplant. I hope to hear your experience.

I had several episodes of HE pre-trial splat. One severe episode put me into a coma. Since my transplant a year ago my life has improved dramatically. I no longer have to worry about HE. I am much happier and a better person. HE is horrible. Please know that your spouse doesn't realize what is happening and is very confused. After his transplant he will be a different person as long as he forgoes alcohol forever

I’ve been through hell & back. It’s the best decision I’ve ever made. I had my liver transplant on December 2nd 2023. Pre-op and post-op was more than I expected. My decision was made after many months of research and being uncomfortable with my health. You need to be patient and strong.