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liver transplant

im 2 months post liver transplant so i know its early days.but i feel worse than before.have been reading of peoples reaction to anti rejection meds and am getting worried about how these meds are affecting me.i ache all over and appitite is terrible.never gave anti rejection meds a thought before tx thought i was going to feel loads better once i had transplant i didnt expect all the problems that im having.am having that survivors guilt that i hear of not nice.am hoping as they lower anti rejection meds things will pick up.would like to hear anyones experiances in the early days of there transplants.thankyou bill

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  • Hi Bill,

    I am approaching 3 months post tx. I was hospitalized on 11/14/2017 and received my tx on 12/4/2016, discharged from the hospital on 1/4/2017 and returned to my job on 2/15/2017. Had and still have my moments with the meds (appetite is not one), I was really sick and end stage liver disease / failure. I seen the end and it was not pretty, I know there are other forces at work, and I had received 2 donor organs in 24 hours, first was not viable. My dad, wife and daughter were bedside and helped me convalesce. I had to learn to do everything again, walk, talk, chew, swallow ect. I still have issues with my right leg and hands, these are annoying and frustrating but I do feel better. Feeling worse in my situation was not an option. Moving forward I suggest hang in there and follow the gameplan.

    Best Wishes,

    Tom

  • Hey Bill, I just hit 6yrs post liver tx, i know people tell you to accept your gift and not have survivors guilt, but it's real, I think of all my ailments since my transplant, emotionally that's the thing I have most trouble with, I know I received a gift as did you but it's not easy to deal with, I went to two funerals recently and it hit me again! It's not easy just don't let it get the best of you, ultimately you were chosen to be here for a reason, embrace it, I wish I had learned more about the meds and the football in the stomach feeling and the abdomen pain and weak legs , your here buddy and the good thing is if you stay on the meds, with time the pain lessens, you will have great n crappy days but you survived something that not many people can relate to, this site is very helpful, there are really kind people here, very smart , I wish the hospital promoted this site before my transplant, I might have had a heads up, but just like me, you will be a stronger more humble person in time. Congratulations on your transplant and stay positive, things get better!
  • Hi Bill,<br />
    Congratulations on your Tx . I had my Tx aug 9 2016, lots of aches and pains for several months, my appetite was terrible pre Tx couldn't taste a thing and felt like gagging at the taste of food. After Tx , lots of pain and low appetite, than slowly, things started working again. My appetite slowly came back, I made sure I exercised regularly according to physical therapist, crammed down protein, lots of water and electrolyte water ..... just followed instructions to the tea .. staying in close communication with the liver team helped too with aches and pain.
  • After a 5 month hospital stay with my transplant I didn't feel too good either. I can assure you it gets way better and I am 17years post transplant. Keep a positive attitude. Good luck,  

  • Dear Bill

    Mr. Liver is about 2.5 years post transplant.

    Survivor's guilt= FORGET IT. You received a great gift, you did not live and someone else died instead. Someone else was already DEAD!! Your donor was already dead and a family made a difficult decision to bury their family member missing some tissue. Honor your donor's life and live your's to the fullest. Don't be guilty, you are not the reason, the donor was already dead. I am sure your loved ones are VERY grateful you are still here!!

    Mr. Liver has had ups & downs, but  overall things are good. Your body has had a major traumatic assualt on it with the transplant.  You are also taking major drugs with side effects. You still need to heal and regain strength.

    Mr. Liver's appetite was terrible post transplant and tired, and very low energy. Best advice, have patience and give it time. Do what you need to heal. Your body is talking to you, listen to it.

    Best of luck

    Mrs. Liver

  • Although I agree with Mark's advice about walking, there may be other reasons you aren't feeling well, yet. Consider the meds you're taking. As your meds are lowered you will probably feel a lot better. Also, I had a real problem with generic tacrolimus and could only take the brand name prograf.

     Be patient, eat well, exercise as much or as little as you can~ stretching and walking are ideal. Good luck.

  • William,

    I am on my sixth year of liver transplant (hepatitis B). I have had similar issues during the first six months or so. But gradually when the intake of  immunosuppressant (tacrolimus in my case), is reduced, things would be better. You have to bear with it for some more time. After five years of tx, with minimal medication, I feel pretty normal now.

  • I felt pretty bad physically and emotionally for about 2.5 months post transplant. Things were not going as smoothly as I had somehow expected. I had no appetite at all which turned out to be due to Cellcept (changed to Myfortic) and higher does of Prograf (now reduced). Plus, I simply could not tolerate the high dose of magnesium they had me on post transplant which caused diarrhea. Eventually, things stabilize.
    It will almost certainly improve. Stay hopeful and positive as much as you possibly can.
  • William,

      Sorry that you are feeling poorly.  Be sure you are discussing in detail with your transplant nurse/coordinator and with your doctor when you see him what you are experiencing.  You need to be as detailed as possible so they will know how to address these concerns.  Everyone is different and sometimes anti-rejection meds can cause adverse effects.  I was on Prograf. Cellcept and Prednisone immediate post transplant and I had some damage in my colon to the Cellcept so they switched me off of that and put MyFortic in its place.  So there are changes that can be made if needs be.

      One question though.  Are you walking at least 30 minutes each day?  If you are not walking you need to be.  That is a big part of transplant recovery.  I hope you can get over the guilt soon, that's not good for your recovery either.  Something to think about, on the exact one year anniversary of my liver transplant this year I met my donors family.  It was one of the most rewarding and precious moments in my life.  It meant so much to them as well as me and our families.  To know more personally about my donor, his family and all means so much.  You may have this opportunity if you pursue it.  Sit down one day when you are feeling blue about it all and write that anonymous letter that you are allowed and send it to your donor family through your transplant team.  Who knows, one day you may receive a reply and have the same opportunity I had.  I wish you well in your progress.  It will get better!

    Mark
    Liver Transplant 7-2015 / PSC 2011

    • They did not give me any information regarding the donor yet. It has only been three months. In time does this information become available?
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