Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

@gaylea1

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.

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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

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@bogietopar

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

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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

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@colleenyoung

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?

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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???

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@gaylea1

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.

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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

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@sg3

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

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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.

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@nrbecerril

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.

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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.

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@nrbecerril

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???

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@nrbecerril, Hi ! Welcome! Congratulations on your recent liver transplant!!!
I had a liver and kidney transplant in 2009. I did not have pain in the area of my liver transplant surgery after my initial surgery healing, but I did have some pain/discomfort in
my lower left abdomen where my new kidney is located. I remember asking about it at my 1st year checkup, and learned that it was scar tissue and that if I kept up with gentle exercises, it would do no harm and would go away in time. It did! However when my husband and I joined a gym, I became over zealous and the pain plus returned. Intuitively, I reduced my level of exercise, and all was well again.

Are you possible over lifting or exerting? Are you able to ease up for a while? Or do you have a job that requires lifting? Have you mentioned this to your liver transplant team?

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I’m 7 weeks post transplant and I just wonder if I will ever truly feel better and get back to my old self.

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@jennybouch

I’m 7 weeks post transplant and I just wonder if I will ever truly feel better and get back to my old self.

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Hi, @jennybouch. Wow! You have certainly jumped into the liver transplant support with a perfectly good question❤️. First of all, I want to extend my virtual handshake or hug in a sincere welcome. My transplant was 14 years ago and I can safely assure you that you are not alone with this question. At 7 weeks you are still in recovery from surgery, and your body needs time to heal and to adjust to medicines. Most of us, myself include, were very ill prior to our transplantation. Plus, there are individual differences with pretransplant health concerns in addition to our failing organ(s).
Jenny, what part of your recovery is most troubling to you? We are here to listen and to share our experiences. You are not alone.

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Hi Jen!! I am less than 6 months since LTP and I can 't truly answer your question. I will say that physically you should begin getting better daily. The 2 month mark was a time that exercise and sleep becoming a part of my regiment again. However, growing and healing pains also were becoming a part of me.
I feel great most of the time and really would like to be back to normal. However, physical and mental fatigue are a struggle. I can tell you that it is great to have venues like this to vent and to recieve support/encouragement.
Congratulations on your gift of life.

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