Liver transplant - Let's support each other

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

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

@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.

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?

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.

@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.

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

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 😊🙏🏽

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

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.