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.

@jackie421blfdgurl

Well. It affects my balance I
Tend to fall alot I move around a lot in am and early afternoon before I go to work. Does not seem to help at all . My family Dr. Wants to prescribe gabapectin for neuropathy
Take at night. Have not gotten the pills yet!!!! But if I do will keep ya all posted. Thanks for your info. I only have been on tacrolimus for 3 yrs. This is one of the side effects. Other meds are not so hot either....

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I agree, I have a bit of balance issue as well but like you said “ don’t read side effects 😊”
Way too many to read and cause worry right ?
We do what we can and better than the alternative we faced 👍🏽🙏🏽😊

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@edwardlwallace

I am going on 7 years post transplant and have been on Envarsus / tacro and have the numbness and tingling as well. I have heard others say the same and mine hasn’t gotten much worse maybe at times worse than others. I have found exercise to help curb it so walking / biking / tend to help. Interested if you find any other options share as I think alot of us would like to know 😊🙏🏽

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Well. It affects my balance I
Tend to fall alot I move around a lot in am and early afternoon before I go to work. Does not seem to help at all . My family Dr. Wants to prescribe gabapectin for neuropathy
Take at night. Have not gotten the pills yet!!!! But if I do will keep ya all posted. Thanks for your info. I only have been on tacrolimus for 3 yrs. This is one of the side effects. Other meds are not so hot either....

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@coreyb77

@rrichardparker I am a new member and looking to be a part of a community to share my experiences and learn from others. My transplant started on March 10, 2023 and concluded March 12, 2023 (there was a complication) so I still have moments when communicating with people who can relate to some of what I'm dealing with.

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Richard,
I understand and had to be transplanted again a week after my first so I kind of get where you’re coming from.
I think you will find it helpful here.

Blessings Ed

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Hi Rosemary dud my post come thru regarding my tacrolimus.my legs and feet are numb legs hurt if I touch them. Had two emg test and it showed condition is worse. Any suggestions. How r u? Hope all is well thanks. Jackie

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@coreyb77

Since my transplant in March 2023 I have been dealing with bile duct issues. They get backed up which leads to high fevers (i.e. 102.5) along with significant body chills and decreased motor functions. Thankfully most have not lasted more than one full day, however I've had 8 ERCP's and stents put in and taken out. According to the liver team this can continue for a long time. Has anyone had a similar set of experiences?

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@corey77
Hi Corey, Congratulations on your liver transplant in March 2023! Iwould like to welcome you to Connect, and to let you know that as a registered member, you are part of the Mayo Connect on-line community and are invited to partake in any of the support groups,
I would like to help you get started by connecting you with some liver transplant recipients who have shared their experiences with bile duct issues.

Here is the link. Go to pg 3 and scroll to the bottom of the page 3 where the conversation about bile duct issues begins:
- Want to connect with other post liver transplant patients
https://connect.mayoclinic.org/discussion/want-to-connect-with-other-post-liver-transplant-patients/?pg=3#chv4-comment-stream-header
Corey, I invite you to join into the conversation with @ajdo129 @kandidubrall, @erikaclark.

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Since my transplant in March 2023 I have been dealing with bile duct issues. They get backed up which leads to high fevers (i.e. 102.5) along with significant body chills and decreased motor functions. Thankfully most have not lasted more than one full day, however I've had 8 ERCP's and stents put in and taken out. According to the liver team this can continue for a long time. Has anyone had a similar set of experiences?

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Good afternoon Everyone. My name is Corey. I am one year post-transplant (03/10/23) . I was looking for a support group to learn from, ask questions, and share my experiences. I am a member of other non-transplant support groups and find them to be extremely beneficial. I am looking forward to reading all of the comments and connecting with others.

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@rosemarya

@rrichardparker, I want to re-welcome you to Connect. It has been a while since I have seen you in the transplant group. I am also a transplant recipient. I joined Mayo Connect because I wanted to meet and to learn from other transplant patients. I learned that as a recipient, I can share my own experiences to help others along their own journey. I have a feeling that you have learned a lot from your transplant, as well as how to manage your self care for 6 post transplant years.

Are you interested in supporting others who are like yourself?
I invite you to look thru the transplant discussions that are happening because there have been a lot of new members and conversations. You are always welcome to join in anywhere, with your own comments, questions, and helpful suggestions.
How can I help you get started?

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@rrichardparker I am a new member and looking to be a part of a community to share my experiences and learn from others. My transplant started on March 10, 2023 and concluded March 12, 2023 (there was a complication) so I still have moments when communicating with people who can relate to some of what I'm dealing with.

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@gaylea1

@lmctif as a pre-transplant liver patient I am interested in symptoms that occur before surgery and tips on how to remedy them. Sharing in others journeys seems to be very helpful and combats the lonliness. Just knowing that others are waiting and discussing post transplant expectations are beneficial.

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@lmctif I had similar symptoms that some others listed (high ammonia levels) but one interesting symptom was a high fever and body chills.

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I am going on 7 years post transplant and have been on Envarsus / tacro and have the numbness and tingling as well. I have heard others say the same and mine hasn’t gotten much worse maybe at times worse than others. I have found exercise to help curb it so walking / biking / tend to help. Interested if you find any other options share as I think alot of us would like to know 😊🙏🏽

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