Liver transplant - Let's support each other

@jackie421blfdgurl, Oops! I am so concerned when I think about you falling a lot. I fell, actually missed the bottom step and - down I went. Fractured wrist, and it is no fun! I don't want you to do that! Have you thought about using a cane for the time being, at least until the dizziness is resolved.
Remember to tell your transplant team about any additional medications. They could interfere with immunosuppressent meds or affect your labs.
I'm going to be thinking about you and hoping that you are soon dancing!

Hi, @anniejax04 and Welcome to Mayo Connect. I am a transplant recipient, and I understand how you are feeling as you approach the date of your liver transplant evaluation. I can assure you that you are not alone.
Are you currently a patient at Mayo? If not, you will be amazed at the coordinated care and the focused attention on you-the patient. You should have received a detailed schedule of all of your appointments. Yes, it is going to be like a marathon and you will sleep well afterwards!

My advice is to bring a notebook to take notes and write questins, and a tote bag for all of the information that you will be given. Bring some snacks and a bottle of water in case you don't have time for eating. Of course a light sweater is a necessity because the buildings are always cold!

I will be looking for some transplant patients from Phoenix to connect with, In the meantime, I have located a discussion that has been ongoing for a long time. Like any conversation, it does veer off course. Yu might want to look at the beginning (oldest) comments first.
- Transplant Evaluation - What to expect
https://connect.mayoclinic.org/discussion/transplant-evaluation-what-to-expect/
Annie,
Will you be traveling to Phoenix? Have you arranged lodging? Is someone coming with you to be a 2nd set of ears? What is your biggest concern right now? Do you have any questions about any of the tests?

EDWARD....it seems yes we r grateful beyond words. But....our lives, moving forward is a crap shoot with all the meds we have to take.i know my situation is linked to tacrolimus...but looking at all other drugs those side effects are worse than the list with tacrolimus. When something happens to me I want to know why......oh well another day. Have a good one!

On a June 25, I have a liver evaluation at the Phoenix campus. I’m terribly nervous! Any advice?

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 👍🏽🙏🏽😊

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....

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?