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Want to connect with other post liver transplant patients
Transplants | Last Active: Aug 13, 2023 | Replies (78)Comment receiving replies
My transplant was June 2021. I received the transplant rather quickly and don’t remember much till about a week after. I had NASH. Prior to surgery I had veracies (always spell that wrong) several times admitted to the hospital. The last time was bad lots of blood but the local hospital would not touch me, after a week of waiting I was transferred. My new liver is working good but I am having issues with protein, fluid and my red blood cells. Recently my fluid was so bad I hand chronic heart failure it was overworking my heart and a valve was not closing. So I had to reduce one of the medications sirolimous and go back on lacesicks and increase the tacorlimous. After 2 1/2 weeks I was released less 52 lbs. Now I am skin and bones and still have more fluid although I feel much better and still on oxygen but not as much.I guess my question is anyone else have these problems 8 months post surgery. I also have a round bump on my right side in my abdomen they tell me it is blood but it is dry and my body will absorb it, it is about 3”w x 2”l and on the surface that I can tell 1 1/2” deep. Only bothers me off and on.
Replies to "My transplant was June 2021. I received the transplant rather quickly and don’t remember much till..."
Hello @marniek, I am very sorry about your ongoing issues. I had my liver transplant in August 2020. I was in the hospital for a month and a week due to several issues, one of which was very low protein and lack of appetite. I was released with a feeding tube. Upon release I started drinking several Orgain protein drinks a day. I’m mostly a vegetarian, so this helped me get the necessary protein. I also struggled with weight, my normal weight, pre-ascites, was 125 (I’m 5.5). I was down to 102 following my release. I’m now at 107. My protein is fine though. I did have a lot of fluid drainage issues as well, but it was under control by the time I left the hospital.
What do your doctors say about your issues? As patients, we all have different experiences. But I’ve always found that my team has been supportive and have the answers.
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Hi, @marniek Welcome to Connect!
I too am post-transplant, my transplant was in September of 2016. I wish I could say more to help you but I didn't have any of the issues that you are experiencing. I am on sirolimus, tacrolimus was causing my creatinine to be higher than optimal. That is the only post-transplant medication I now take. I was taking prednisone but that was discontinued last year.
It's good that your local hospital transferred you to your transplant center. My local hospital was pretty useless when I had issues prior to transplant. Why did it take a week to transfer you?
When I have my bi-monthly lab work done my protein level is never quite up to the range but it's not far below and my team has never considered it to be a problem. I retained a lot of fluid in the last month prior to my transplant but that all gradually came off in the two or three months following my transplant.
I hope your doctors are able to figure out what is causing your problems and resolve them. Please let us know how you are doing.
JK