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General

Transplant Fatigue

Bagman12256Transplant Patient
September 24, 2025 in General

I recently was playing on AI about a life plan going forward for someone whose transplant is 23 years old. It came back with a slew of recommendations and finally mentioned to watch out for Transplant Fatigue. Has anyone experienced this? I am not sure if it meant literal fatigue or the grind of living on meds/with doctors/restrictions, etc. Thoughts?

1 - 10 of 10 Replies

  • TiaBeanTransplant Patient

    I call it the fatigue monster. I get physically and mentally fatigued. I had a pretty rough first year after transplant with the endless fatigue. I am almost two years post transplant and I still get those days where my energy level doesn't match up with the day's plans, but they are not as often. I think the mental fatigue can be more tiresome. I was a little blue today thinking that I am a transplant patient. A survivor. That still mentally and emotionally fatigues me.

    September 24, 2025
  • eachoneTransplant Patient

    I have suffered from this ever since my first transplant. And at the present, I am almost 10 months post transplant from my second transplant and still battling this fight. It's very debilitating and mentally draining. I try my best to keep active and take advantage earlier in the day to get the things I need to get done just in case later I am unable to due to this. My advice is to hang in there and stay strong 💪 🙏

    September 24, 2025
  • DebTransplant Patient

    And I thought it was just me!! I knew all the meds took a toll on my the first 6 months or so after transplant but I’m almost 6 years post tplant and I get tired so easily. I was thinking my age may be part of it but I’m happy and thankful to be alive be able to do what I can.

    September 24, 2025
  • Bagman12256Transplant Patient

    Thanks for the responses. Because of my long term status I know the grind of "wondering what's going to happen" takes it's toll. I wonder if the way I'm feeling is due to my kidney or just aging. I wonder about the long term effects of my meds. I've had many skin cancer issues, that is a long term worry. I've read many of the posts on here about the many restrictions that must be kept in mind. There are many things that cause fatigue but I guess we need to keep working on the things we can control and try to let go of what we can't.

    September 24, 2025
  • CocoTransplant Patient

    I have fatigue for many many years. Now I think it’s high blood sugar ( glucose) level caused by prednisone.

    September 25, 2025
  • TheMacTransplant Patient

    First let me say, I am sorry you are struggling with fatigue. As a 2.5 liver transplanted woman, I have the same issues.

    i try to keep my daytime activities realistic and mostly never engage in after 5 activities. I am chronically tired. I just figured it was the transplant and aging. Diagnosed with end stage liver disease at 51. Now I am approaching 58. I believe that age plays a factor but so many other things could alter our energy. Diet, exercise, meds, mental and emotional stress, how much sleep you get, etc. It is difficult to figure out. Have you talked to your docs about this? I find they have a lot of insight to share.

    September 25, 2025
  • Bagman12256Transplant Patient

    Yes it’s very difficult to figure out. Aging vs side effects/tpx. I only have mild fatigue, didn’t mean to imply something more. I was really trying to understand TPX fatigue. I guess it includes everything.

    September 25, 2025
  • AliEm14Expert
    Transplant Patient

    I could see transplant fatigue being taken in both the physical and mental direction, though based on the wording I would probably lean towards mental fatigue.

    Definitely, as others have echoed, physical fatigue is huge post transplant, or with any chronic illness. Our bodies go through so much just to stay alive, and of course that takes its toll.

    I think mentally, we aren't really built for this much stress all the time. This is even after we get the organ, all the stress of the waiting list, we navigate a traumatic surgery and recovery, and then we're just expected to bounce back. I'm constantly analyzing every symptom I feel to see if it's rejection, staying on top of labs, trying to figure out what foods to eat and how much water to drink. That level of mental intensity could lead to burnout for anyone. Mental health care is so linked to the body, and my pet peeve is that we aren't given more support when navigating transplant.

    September 25, 2025
  • Bagman12256Transplant Patient

    Thanks I think the word burnout is perfect. 20 years ago I never thought about my transplant and just tried to live. Of course I was always reminded when I took my meds or went to docs, but I didn't put many restrictions on myself. As I get older I find myself thinking about many more of the things you mentioned.

    September 25, 2025
  • kowalskikTransplant Patient

    I’m tired. Always. It’s sad because I should be grateful. I am grateful, but I feel like I’m paying a price for this transplant every day. It’s so easy to become depressed. It’s so hard to fight it. I hope energy finds you and really good days happen more often. I’m almost 3 years post. I think I should be used to the meds by now. I need an IV of coffee or Red Bull.

    September 30, 2025
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