Liver transplant - Let's support each other

My labs are good and things are improving everyday. When I was on Tacro, my side effects were much worse, but when they switched me to Envarsus, which is the extended release form of Tacro, my side effects considerably lessened. Also getting off CellCept, which was awful for me and switched to Sirolimus made a big difference. I still feel some fatigue and minor issues that are manageable. I hope this helps and that you start to feel better soon.

Oh would love to chat more with you. I'm been in severe pain and lack of energy... I feel like a zombie. RA doctor thinks it's Trac but has to prove it's not RA so doing tons of test first. Meanwhile dealing with pain daily.
I also have same issue with stomach but now I'm also retaining fluid. Anything else your experiencing? Nauseous? I'm always nauseous but get hungry after 8pm.

Thank you. I can relate. Sometimes by stomach feels bigger then other times, especially after dinner or lunch. I’m only 7 months post transplant and I feel it will take time. Daily walks are certainly helpful.

Steven

It feels like a dull pain. It could be muscles, scar tissue but everytime I carry 15lbs or more I feel like something will pop. Yesterday my RA doctor said my RA isn't acting up and he suspects it's this weird phenomenon that happens with Trac. That gives you a lot of severe pain. Has anyone experience this???

I had 2 incisional hernias operated on (right side) and repaired. Unfortunately the healing has nor gone that well. I have an additional hernia in the centre of my abdomen that still has to be addressed. I was 3 years post before I was diagnosed. I'm now 4.5 years post

I had a liver transplant in January of 21. The temperature issue is still present but substantially under control.
The scar tissue is a bigger issue. I found what I was told was scar issue was changing in texture hard or soft. I could also hear liquid. It turned out to be an umbilical hernia. It is quite common and May come back after repaired. Tom

Please give yourself a little more time. 7 mos post is not that long for your body to bounce back from such a major surgery. Your organs are slowly going back into place and have experienced some trauma. Also, your core muscles have been surgerically severed. It may take a year or more to feel kind of normal again. Be patient and kind to yourself and listen to your body for rest.

@nrbecerril I can relate to some of what you’re sharing. I had a liver transplant almost 2 years ago. My belly still feels strange sometimes- the scar tissue, the swelling, sometimes I get a weird sensation that something is shifting around- like muscles and scar tissue. For a long while I couldn’t wear blue jeans because the material bothered my belly scars etc. All is better now but still in evidence. I can wear jeans but by days end they’re bothering me. Even now my belly is lumpy and uneven but gets better over time.

I used to have a lot of swelling post transplant (leg swelling) and they prescribed diuretics and ordered daily walks. Walking after a transplant seems to help with just about every aspect of recovery.

I am sorry you have RA with flare ups- that adds another dimension. I have ulcerative colitis, another autoimmune inflammatory disease, and struggle with flare ups much more that first year like you. By now this has also eased.

I’d send you a picture of my belly to reassure you that you are certainly not alone, but I’d scare everyone off of this site!!

Hi @nrbecerril, I'd like to add my welcome. I moved your intro post to this existing discussion:
- Liver transplant - Let's support each other https://connect.mayoclinic.org/discussion/liver-support-group/

I did this so that you can easily connect with many other liver transplant members like @kandidubrall @rosemarya @sg3 @katebw @myfablife @kathycaudle @athenalee @gaylea1 and more.

I'm sorry to hear that 7 months after liver transplant you're dealing with belly issues as well as temperature issues and swelling in your legs. Having rheumatoid arthritis sounds like it might complicate matters for you. I'm sure you've talked to your transplant team about these things and now you just want to connect with other liver transplant recipients to know you're not alone. What has your transplant team shared with you? Can you describe the "wierd" feeling you have in your belly?

Welcome to Connect, @nrbecerril Congratulations on receiving your transplant. It’s certainly a special gift but it can come with some adjustments.

We have quite a few members with different types of transplants who would love to share what they’ve learned through their experiences to help you along your journey.