Liver
Pre-transplant - but still have questions
Just found this site today. Jumping right in with my first post.
Male, 57, ALD, surprisingly, I wasn't a big drinker, except in my twenties.
Celiac and vitiligo are the autoimmune diseases that I was diagnosed with about 16 years ago. I'm used to sudden, necessary lifestyle changes. -
We, my wife and I, finally called the hospital to schedule my liver transplant for May 2026.
My wife will be my living donor. It has been a struggle for me to agree to that.
There are still so many unanswered questions. I work with my team and therapist. We have a small business that relies on my wife and me to be present and working.
In the last few years, we took up recreational running, and now I've started running in the gym and lifting weights. My doc says I need to lift to maintain muscle. Sometimes I get too competitive and run faster and lift more weight than my doctor would approve of.
I want to be in the best shape I can be again.
I hope recovery will not take more than 3 months before I can return to my desk. My wife gets scared when I speak of potential risks and side effects.
Would love to hear what the real post-transplant life will look like.
Has anyone been able to run again post-transplant and live a (somewhat) normal life?
Thanks for reading this!
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Hi run_for_fun
I cannot tell you my own experiences yet, as I am also waiting for a liver, but I recommend you listen to Danny's Podcasts https://www.youtube.com/@TransplantStrong . There you will find a great number of LTx athletes who have been able to live a very active, healthy and fit life after their LTx. I am deeply impressed (and relieved) when I listen to their stories.
Kind regards and all the best for both of you!
Gesine
Thank you, Gesine.
I bookmarked it for watching later tonight.
My best wishes to you,
Andreas
Transplant Patient
I can share my liver transplant story, though I know it was quite a-typical! I can also hint we will have a living liver donor coming to share his story with us in support groups in February so stay tuned for that 😉
I felt like my healing happened in 3 month milestones. So I felt improvement at 3 months, at 6 months… pretty much major leaps for at least the first year. I had almost every possible complication in the books, so that set me back quite a bit. I had to change careers post transplant (I worked with tiny humans before, who are notorious for carrying germs and not caring who they give them to) but I was back to working about 8 months post transplant. My brother was my living donor my first transplant and he was back in college within a few months, now lives a perfectly normal life minus a gallbladder
Moving is key, even when you won’t feel like it. If you can, get set up with a good PT asap. Having the mental flexibility to roll with the punches helps a ton.
And I second @DannyH. I’m pretty sure he does everything post liver transplant 😂 he hosts a support group on the first Wednesday of every month if you ever want to join us. But honestly finding community and people you can look at as inspiration helps a lot to keep you motivated. Whatever questions come up, I know a lot of people here would love to chat.
Welcome, I am glad you found us. We are a community of support and solutions, not a typical site where everyone complains. Pre-transplant is a scary time, I remember it well. So many questions about the unknown. Every organ type receives the organ differently. I have heard stories of getting back to "normal" quickly and others moving more slowly. I had a difficult time but I have never once wished I had not done it. And I have to say, I have never met a transplant patient that wished they had not had the transplant. I will have 3 years in March LX and life gets better and better as my stamina grows. I would definitely recommend our support groups as well as the Podcasts. Keep us posted on how it goes.
Hi @run_for_fun. Welcome! I am two years post liver transplant. My first year post surgery was rough. I had complications that held me back as well. I went into a 12 day coma after my surgery, and I had to work my way back to walking again. I do feel that my second year has gone extremely well. I really feel better at life. I agree with @TheMac. I haven't met a transplant patient that wouldn't do it again. Life after transplant can be everything you want. There will be moments of doubt, but you will be better for it on the other side.
Thank you all for the warm welcome! I've been listening to the podcast from @DannyH the last two days and it really helps to hear everyone's personal experience, it takes the edge off, some anecdotes make me laugh out loud. There is a good vibe here, a community of survivors, first time I don't feel guilty talking about surgery out loud. I'm really into learning as much as I can and anxious to get on the table.
My takeaways so far are: 1. Healing may take longer than expected 2. Complications are part of the deal 3. I will have to work hard to get back on track 4. Future goal, running in the World Transplant Games.
That's it for today, snow storm is on its way to the East Coast. I'm looking forward to hearing more from everyone.
-Andreas