Liver transplant - Let's support each other

@mostlybill I was taken off prednisone and cellcept months after transplant . I had very bad tremors and shaking and once off those meds i was fine.

@flagal22 I recall reading that MELD can measure above 40 but it is not at all typical so they generally give that as the top of the range. Perhaps the new way to calculate MELD has made those high numbers more common. You were so lucky to have only had one HE episode. Did you also modify your diet? If I recall correctly, you did not wait long for a transplant, right?
I am really beginning to wonder if my short term memory could be from my HE episodes. I think some of mine is simply not paying enough attention, but that would not apply to things I read, or things I say. My son gets exasperated with me when I tell him something, saying I've told him that 100 times. Obviously he exaggerates but I know I do tell him things more than once. I think it's simply because I don't remember if I told him or someone else!
JK

I see the surgeon on Thursday to discuss getting off the prednisone. Yay. The trouble is that none of this is that simple.

If u have seen any of my posts,u would know I’m 100% behind u about HE. I’m the one who has a disability case trying to prove that my instant and short term memory loss is due to permanent brain damage caused from excessive and long term HE episodes. My memory has gotten soo bad! Mostly it’s instant memory loss. Like I forget what I’m saying,can’t remember to turn the stove off,things like that. I suffered from HE for almost 2 years straight. It was daily HE episodes. My ammonia levels were 190+. I lived on lactolose for a year and a half. Every 3 hrs I had to drink a dose. I crapped my brains out for over a year everyday. I also was struck down with fluid every 2 weeks. I had a standing order to tap my abdomen every 12 days. They pulled ten thousand cc off. That’s 6 2liter bottles! Image that ,6 2liters of coke. Got that vision? Now,instead of coke replace it with my fluid. That’s how much they got for about a year ,tapping me every 12 days. Get this though,I was never yellow. Not my eyes,not my skin,nothing! I was never put on 2 drugs that I hear most of u were on. Something they gave you or the others to help with HE. It’s not lactolose either. It’s called something else. I’m just thinking to myself,why wasent I put on it since I suffered so bad with HE. Do u know what I’m talking about? Anybody?

@rowdyramsey, I did not have HE. Please know that I am thinking about you. I hope that you will soon receive the healing and answers that bring a solution that you deserve.

Thanks for your thoughts. I think the tough part is that we need to come to terms with side effects, they will never go away. As I grow stronger I will be adding yoga to my weekly activities. This was a great help to me with relaxation pre-transplant. Daily walks help as well. I am also eager to resume social activities. See more of friends, grandchildren, and my wife and fewer doctors!

I see the surgeon on Thursday to discuss getting off the prednisone. Yay. The trouble is that none of this is that simple.

@rowdyramsey I just went back to read your prior posts. It sounds as if these problems didn't start immediately after transplant? I saw a response I had before that I still believe - I have no medical training but I think if they started a couple of years after your transplant then the problems are probably not related to HE episodes. Did you have any of these problems immediately after transplant?
That's good that you are seeing a neurologist. I don't know anything about brain scans but hopefully, if you are unable to hold a job they will be able to help you get disability no matter the cause. I am also not familiar with disability. If you are on disability are you allowed to hold a part-time job? I would think that could help you with depression, getting out and interacting and doing something, even if the part-time job is something fairly easy.
Try to eat something. When I can't eat, which is pretty rare, I find that toast does go down well, maybe with a little ginger ale. You do need to keep your energy up and if you don't eat you will be even worse. You mention a son. Does he of anyone live with you to give you some help?
When will you be having brain scans? I hope you will let us know how they turn out.
JK

Not sure if I responded already to this. If I have ,sorry. It’s my memory. I can’t remember if I responded or not. Crap like that happens all the time. Anyway to answer your first question. My loss of memory started soon after the transplant. I gave myself almost a year for recovery and during that first year or towards the end of the year,I began noticing that I wasent getting any better with my memory. It just got worse. So,yes,I noticed it right away. Once the “fog” lifted and my body was got better,I noticed my mind and my thinking had drastically changed. I would love to keep posting my updates because I believe in what I’m doing and saying. I do believe that long lasting HE will leave “brain damage” permanently. Depending on the severity of your experience with HE.

Not sure if I responded already to this. If I have ,sorry. It’s my memory. I can’t remember if I responded or not. Crap like that happens all the time. Anyway to answer your first question. My loss of memory started soon after the transplant. I gave myself almost a year for recovery and during that first year or towards the end of the year,I began noticing that I wasent getting any better with my memory. It just got worse. So,yes,I noticed it right away. Once the “fog” lifted and my body was got better,I noticed my mind and my thinking had drastically changed. I would love to keep posting my updates because I believe in what I’m doing and saying. I do believe that long lasting HE will leave “brain damage” permanently. Depending on the severity of your experience with HE.