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Looking for long-term Transplant success stories

Posted by glm777 @glm777, Dec 9, 2025

My SIL is 37
Transplant at age 20
Recently had biopsy showing inflammation
12 plasma exchange treatments
Now protein in urine
Waiting for antibody blood work to come back.
He and my DD are in their mid 30’s and just found each other less than 2yrs ago. Please give me some hope that my SIL can live many more years!

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pjw51 | @pjw51 | Apr 16 3:18pm
In reply to @ajdo129 "This Monday April 20,2026, I will be having my 4th year post transplant checkup. The first..." + (show)
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This Monday April 20,2026, I will be having my 4th year post transplant checkup. The first year I learned how important it is to take tacrolimus/prograf as close to every 12 hours as possible or else I would trigger warnings of a rejection.
The 2nd year I got a lesson on what it means to be immune suppressed. One sty in my right eye became 11 stys total in both eyes even with regular advised care and meds. Heavy duty antibiotics cleared that up.
I live in AZ and got Valley Fever, mold spores in the soil and air on super windy days. So my 3rd year, I saw the impact of two lifelong meds that have a delicate balance with each other (tacrolimus and fluconazole).
All the rules we are given re foods, herbs, and supplements to avoid; cooking proteins to well done; no alcohol; and other rules become second nature in the way I live my life. I dance, train with weights, enjoy time with friends, take art classes, travel, and yes I nap. Life, this second life, is good and well worth all the rules in keeping it that way.
I hope this helps. Barbara

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@ajdo129

Your post lifted some of the post-transplant questions especially regarding the infections and meds. Thank you @pjw51

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jimb43581921 | @jimb43581921 | Apr 17 9:03pm
In reply to @rosemarya "@tiabean You are on your way to your own long term transplant success story! Two years..." + (show)
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@tiabean
You are on your way to your own long term transplant success story! Two years with your new liver is fantastic, especially hearing that, "It gets better and better every day."

As for each of us with a transplant, there were struggles and hard times that we experienced along the way. Was there anything that you wished that you would have known ahead of time that might have helped prepare you for post transplant living?

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@rosemarya In August 2024, I had acute liver failure due to reasons that still remain unknown. I went from a fit 185 lb, 59 year old man to a guy with a maxed out MELD score in a matter of weeks. After the transplant, I lost 50 lbs and it scared the heck out of me.

I wish I knew the significant weight loss is fairly common. It's due to your body cannibalizing muscle and fat to get the fuel it needs to do the internal repairs.

After the transplant, focus on moving but do not start pushing yourself with intense workouts until you begin regaining weight. If you're like me and worried about how you're going to rebuild muscle as an old person, don't. Your muscle really does come back on its own. The doctor refer to it as real "muscle memory.'
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ajdo129 | @ajdo129 | Apr 17 10:47pm
In reply to @pjw51 "@ajdo129 Your post lifted some of the post-transplant questions especially regarding the infections and meds. Thank..." + (show)
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@ajdo129

Your post lifted some of the post-transplant questions especially regarding the infections and meds. Thank you @pjw51

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@pjw51
I am glad my post transplant learning journey answered some of your questions.
I forgot to mention, I also wash my hands all the time - after I touch money, grocery shop, handle door knobs, pet my pups, etc.
And I scrub all my veggies and fruit before cutting any of them. I was advised not to get pre-chopped foods because there is no assurance that whoever cut them, may have not washed off any bacteria.
There are a lot of sensible rules and it won't be long until they become 2nd nature to you.
ajdo129

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