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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.

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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)
Profile picture for nrbecerril @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
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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)
Profile picture for nrbecerril @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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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.

REPLY
3 replies
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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)
Profile picture for arqui02000 @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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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)
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@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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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)
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@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
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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)
Profile picture for sg3 @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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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)
Profile picture for jamesduaiswamy @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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sg3 | @sg3 | Jul 17, 2023
In reply to @rgb3547 "I've had upper right side pain since the third month after transplant. I am 17 months..." + (show)
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I've had upper right side pain since the third month after transplant. I am 17 months post transplant. After much complaint I had at different times 2 MRIs & 2 Liver biopsies, the last one being about 5 months ago. In addition I have quite elevated liver enzymes, Alk Phos & GGT.
My doctors tell me that I am fine & they are monitoring me. I do not have the bloating problem you mentioned. The pain is more pronounced when I sneeze, cough or have a hearty laugh. It is also sensitive to the touch. I guess I will have to learn to live with it. Or it may go away in time. The doctors also tell me it could be due to a scar tissue or a nerve issue at the incision area. It sure is a much better deal than being 6ft under. There are lots of transplant patients complaining about right side pain of differing proportions. I recommend that you search for "right side pain" in this forum & you may find lots of discussions as this is quite a mature discussion forum. These days I worry more about the persistently elevated liver enzymes than the pain. I don't feel that in a much worrisome position. All kinds of things happen in the first year & gradually they go away. Look down & see at your incisions. You are nearly cut into two halves. Just give it time but you make sure that your coordinators or transplant team are aware of it at every turn. Especially if it has a tendency to progress. Keep the Faith.

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Thank yo so much for taking the time to reply. Very informative.

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rgb3547 | @rgb3547 | 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)
Profile picture for jamesduaiswamy @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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Yes, Tylenol is one of the recommended pain medications but not more than 2000 mg in 24 hours, and that not everyday.
Tylenol in large dosage over a long period is a liver killer.

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