Liver transplant - Let's support each other

@mostlybill I had not really noticed a problem from taking prednisone, until I was diagnosed with osteoporosis and discovered that prednisone contributes to that. Now I hope I will get off in the not too distant future. I asked about it at my three year appointment last month but they are not ready to discontinue it yet. I think my transplant center, Mass General, is fairly conservative. Looking forward to hearing if your surgeon approves discontinuing prednisone. I hope so since you are having so many effects from it.

@rowdyramsey Ramona, you certainly did have to put up with a lot more than many of us prior to transplant. Did you say that your memory problems did not start immediately after transplant though? If so then I think they may need to try to find a different cause. The problems are there, but it is possible that the cause is not what you are thinking it is. The end result is the same of course, it sounds like it would be impossible for you to hold down a full time job. I do hope that you can get some type of disability and also that you might be able to find some job to do that would give you some focus, assuming that is allowed when you are on disability. I personally always found working gave me a boost in how I felt and in focus.
JK

I have a 6 yr old granddaughter, and I am 10 years post transplant. She know that grandma doesn't lip kiss, and she doesn't mess with my food or water glass. And she has always loved to use my hand sanitizer which she calls hanitizer.
Yes, as you gradually increase your activity, you see good results. My husband and I were able to resume hiking in Great Smokeys at 6 months post surgery with approval from my team, at a slower pace and less rugged trail.

Have you seen this? The Mayo transplant staff took one of the transplant discussions and made this handy list: Top Transplant Hacks: Patients Share Their Best Tips and Tricks. It might have some helpful tips for when you resume tour social activities.
https://connect.mayoclinic.org/page/transplant/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/

Thank you for your kindness.

@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.

@mostlybill, I'll be thinking of you.
You are absolutely correct: None of this is simple! Remember that we are tough! We are not alone here!
I look forward to hearing from you after you see the doctor. I hope you get a good check-up and a report of a happy liver.

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?

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

@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

@contentandwell my HE episode occurred shortly after diagnosis I don’t remember the dosage but took it 4 times a day. A month and a half later I was being evaluated at Mayo they added xifaxin and had me titrate the lactulose but I still had issues. I met 2 patients at Mayo that had MELDs in the mid 40’s before it happened to me. I read an article about increasing the MELD scale because more people are having scores above 40. I do not remember where I read this, sorry. Having only one HE episode but noticed short term memory problems before transplant too. My local Gastroenterologist asked me in September if I suffered brain damage. I responded “no” but since then am starting to believe my short term memory issues may be brain damage.

@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