1. < Transplants

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.

sg3 | @sg3 | Jul 17, 2023
In reply to @jamesduaiswamy "Hi Ibuprofen is not recommended for post-liver transplant patients. Tylenol is the go-to medication. During your..." + (show)
@jamesduaiswamy

Hi

Ibuprofen is not recommended for post-liver transplant patients.
Tylenol is the go-to medication.
During your consultation, please obtain a list of all approved medications/food, etc.

All the best.

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Thank you.

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kandidubrall | @kandidubrall | Jul 18, 2023
In reply to @sg3 "Thank you so much. I do have an appointment with my liver transplant team and my..." + (show)
@sg3

Thank you so much. I do have an appointment with my liver transplant team and my doctor tomorrow. They seem to think I could have developed a hernia. Last week I had an unfortunate situation when having a root canal. The ibuprofen caused me to gag from the nausea.

Feeling better today. Thank you for your reply.

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Hello, Thad liver transplant, I was told can’t take ibuprofen, only Tylenol, ibuprofen can make you nausea, you need to check with your hepatology doctor
Get better soon
Kandi

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arqui02000 | @arqui02000 | Jul 20, 2023
In reply to @rosemarya "@afternoonnaps, Welcome to Connect. I want to connect you with some members who have had experience..." + (show)
@rosemarya

@afternoonnaps, Welcome to Connect. I want to connect you with some members who have had experience with transplant at Mayo Arizona. I had my transplant at the Mayo Clinic in Rochester MN. Like your dad, I was an out of state patient. My husband and I stayed at the Transplant House in Rochester MN and it was the best choice we could have made.

I want to invite - @ajdo129, @klm3, @amyintucson, @emilyw, @danab, to this discussion because they are familiar with the Arizona Campus where they receiver their own transplants.
While waiting for someone to respond, here are some links that you might want to look at.

- Gabriel House of Care
https://gabrielhouseofcare.org/
-
- Liver Transplant Program
https://www.mayoclinic.org/departments-centers/liver-transplant/sections/overview/ovc-20212010
-
@afternoonnaps, If you have any questions related to the transplant process, let me know.

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hey you forgot me I had a liver transplant in the best Hospital MAYO CLINIC in Arizona

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1 reply
arqui02000 | @arqui02000 | Jul 20, 2023
In reply to @rosemarya "@arqui02000, If you click on the blue In reply tp at the beginning of this message,..." + (show)
@rosemarya

@arqui02000, If you click on the blue In reply tp at the beginning of this message, you can read about @jinja320 and her 2nd liver transplant experience.

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thank you Rosemary I connect with her

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kandidubrall | @kandidubrall | Aug 2, 2023
In reply to @arqui02000 "hey you forgot me I had a liver transplant in the best Hospital MAYO CLINIC in..." + (show)
@arqui02000

hey you forgot me I had a liver transplant in the best Hospital MAYO CLINIC in Arizona

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Yes so did I, Mayo Clinic was wonderful.
I don’t like the complications I am having, but it’s good to be cancer free

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nrbecerril | @nrbecerril | Sep 20, 2023

Hi everybody. I'm post liver transplant 7mons and having issues with my belly. Anyone can share there experience. Maybe it's scar tissue or muscles healing but I have a weird feeling. Also having a lot of temp issues. I'm either too hot or too cold. I'm sometimes swell in my legs. Please if anyone has knowledge please share. Thank you. It makes it hard because I also have rheumatoid arthritis and I'm getting a lot of flare ups.

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3 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Sep 20, 2023
In reply to @nrbecerril "Hi everybody. I'm post liver transplant 7mons and having issues with my belly. Anyone can share..." + (show)
@nrbecerril

Hi everybody. I'm post liver transplant 7mons and having issues with my belly. Anyone can share there experience. Maybe it's scar tissue or muscles healing but I have a weird feeling. Also having a lot of temp issues. I'm either too hot or too cold. I'm sometimes swell in my legs. Please if anyone has knowledge please share. Thank you. It makes it hard because I also have rheumatoid arthritis and I'm getting a lot of flare ups.

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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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 20, 2023
In reply to @nrbecerril "Hi everybody. I'm post liver transplant 7mons and having issues with my belly. Anyone can share..." + (show)
@nrbecerril

Hi everybody. I'm post liver transplant 7mons and having issues with my belly. Anyone can share there experience. Maybe it's scar tissue or muscles healing but I have a weird feeling. Also having a lot of temp issues. I'm either too hot or too cold. I'm sometimes swell in my legs. Please if anyone has knowledge please share. Thank you. It makes it hard because I also have rheumatoid arthritis and I'm getting a lot of flare ups.

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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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2 replies
katebw | @katebw | Sep 21, 2023
In reply to @colleenyoung "Hi @nrbecerril, I'd like to add my welcome. I moved your intro post to this existing..." + (show)
@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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@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!!

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gaylea1 | @gaylea1 | Sep 22, 2023
In reply to @nrbecerril "Hi everybody. I'm post liver transplant 7mons and having issues with my belly. Anyone can share..." + (show)
@nrbecerril

Hi everybody. I'm post liver transplant 7mons and having issues with my belly. Anyone can share there experience. Maybe it's scar tissue or muscles healing but I have a weird feeling. Also having a lot of temp issues. I'm either too hot or too cold. I'm sometimes swell in my legs. Please if anyone has knowledge please share. Thank you. It makes it hard because I also have rheumatoid arthritis and I'm getting a lot of flare ups.

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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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