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Post Liver Transplant Fatigue
I'm 37 male, had 2 liver transplants. Initially I had Primary Sclerosis Cholangitis (auto immune disease) the first transplant was when I was 32 from a living donor, my sister. The transplant itself was good but because they had to reconstruct my bile ducts it ended up causing blockage after blockage. No matter how many times they fixed it I would get another blockage over the course of 4 years which resulted in liver cirrhosis again and needing another liver. This time they took no chances so my only option was from a diseased donor where I would get the entire liver plus the bile ducts. That was a major success and I haven't had any issues with this new liver at all. hence the name "Third Chance Liver" I have been living with this second liver since August 2025.
It has been about 9 months now since my second transplant and I attempted to return to work (management roll in retail) since I've been doing well but I feel as though I have hit a plateau in energy levels. at first 4 hours was hard and I worked up to working 8 hours 40 hours a week but I honestly feel I can not sustain doing this. I did get stronger to the point where I can go 6 hours no problem but after that I hit a wall and being on my feet all day is rough and my feet hurt into the next day.
I guess I'm writing on here to share my story if anyone has any questions I'd love to answer or if anyone would like to share with me how their recovery went post transplant and what working is like for them. I've seen a lot or people mention that you have to find your "new normal" which is tough because I've been trying to get myself back to where I was work-wise pre-transplant.
After my first transplant I returned to work and I was able to get back to it 100% but after the years of complications and second transplant I am having great difficulty and it seems like my new normal would be around 75% of what my 100% used to be. Sometimes I go to work and I am tired after just 2 hours. Just wondering if anyone else is in the same boat as me with the fatigue and energy levels post transplant. I'm looking for a career change and less physically demanding job also taking some time with my family because life is precious and so very short! Love you all.
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Hi ! Third times a charm ! Congratulations on your latest transplant ! Just one person here but I can relate. I was a manager also (at an investment bank) and managing can be stressful and challenging. I am sure you already looked for the most comfy shoes etc. . After a while I got back to walking my golden retriever long walks but still not 8 hrs a day. A "new normal " did eventually come about close to the old Craig but truth be told I already had retired and did not need 8 hrs a day. Sorry I don't have a silver bullet recommendation but I truly believe over time your stamina will return. My take is we are lucky to have the opportunity to have these types of challenges as opposed to where we would be if we did not have our transplants. Very best of luck. (----:
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2 ReactionsI'm 60 years old and now 19 months post transplant following acute liver failure. I have also experienced the energy wall you've talked about. After the transplant, I started walking with a walker and was doing less than 500 steps per day. The wall was almost immediate. To make matters worse, I developed deep vein thrombosis a month after the transplant during a 6 hour drive to attend my son's wedding. Today, I'm walking over 35 miles per week and the wall generally doesn't hit until I sit down after dinner. My best advice is to get yourself a step tracker, increase your stamina through walking and then walking on an incline with a goal of doing 3 mph at a 12% incline for 30 minutes. Rome was not built in a day. Start slowly, build up and know that making the wall insignificant is possible. I also had your painful feet, including a new case of plantar fasciitis, and tried many different types of shoes until I found sweet relief with a pair of Hoka sneakers. I cannot begin to explain how good they feel to painful feet. Finally, reductions in my Tacrolimus dosage and stopping mycophenelate definitely provided me with more energy. Best of luck!
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3 ReactionsThank you @craigcraig
I appreciate your comment. This definitely isn’t a big problem compared to other problems we’ve been through or that other people have. It’s just good to know there’s other people out there that can relate. Thanks for taking the time to write.
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2 ReactionsThank you for your comment @jimb43581921
I’ll keep exorcising and get my stamina up. I appreciate the advice, I did get a really good pair of shoes and although it does help I know it will also take some time. I’ll try your recommendations, you’ve given me some motivation. I’m not sure if the doctors plan to reduce any of my meds anymore but you’ve given me something to look forward to. Thank you for being there and taking the time to comment.
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2 ReactionsYou're very welcome. So many people helped me and it feel good to give back and help others. Just know you can do it and don't stop.