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.

@footballmum

Congratulations 🎉👏. Wow you are one active young lady. I'm so happy to hear that your liver and kidneys are doing so well. My new liver is doing amazing. My kidneys however are another story. They really took a wallop during my pre-transplant struggles and unfortunately have never recovered. So far no dialysis, so that's a win. Thank you for listening. 💚

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@footballmum, I have to admit that I can't be still. My hand have always got to be doing something like a puzzle or knitting, or crocheting. I believe I got it from my mom because she was that way.
I hear what you are saying about your kidneys taking a hit. That is what i see from a lot of our members. I'm crossing my fingers about not needing diaysis and send my hopes that all remains stable. I know that you are dedicated to taking care of yourself, and this is to your benefit.
How is your energy? What are some things that you enjoy doing in your extra time?

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Hello 🤗
Thank you for asking. I enjoy camping, photography and going for walks. My energy level is pretty good. I still have tough days but they are fewer and farther between. My biggest concern now is lack of sleep. I really struggle with uninterrupted sleep. I keep myself busy with work at my church and when the weather permits my garden.

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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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Rosemary hi girl! Jackie here. Question...October will b 4 years. I have been experiencing
Numbness and tingle in feet and legs. The numbness is always there the feet feel it especially at night. I have had emg test from neurologist and from current test to previous the condition has worsen. He thinks it is due to tacrolimus but if these symptoms r getting worse I guess my liver dr might want to change my mess. Wondering if anyone else is like me....thanks Rosey..love u guys all have a great day

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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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@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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@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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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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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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@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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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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