Liver transplant - Let's support each other

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?

Hi Annie, I had my transplant in Phoenix in February. The Transplant team there is wonderful. They had good answers to every question I had during the evaluation. Write down all of your concerns and take the list with you. I learned so much about the transplant process from the team there, and by asking questions I felt I understood the process, risks, and healing process well. So we (my caretaker and I) felt very confident (though still nervous) going into the actual transplant. Good luck to you!

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

@rosemarya Hi Rosemary, so good to see you are helping others. I just wanted to let u know Marlo is now on her 8th week after pancreas and kidney transplant from Mayo in Glendale Az. So happy to report she is doing well, had issues with, infections, blood clots in lungs and pancrease, eating more protein, but she is eating much better, she hasn’t been to dialysis since before transplant or had insulin, it’s hard and yet beautiful..yesterday she wrote her thank you letter to the donor yesterday, she let me read it and I cried..so grateful for those and their families who help share life .. she will always take the best care of her self. Soon our time at Mayo will come to an end because of her insurance, but they were a miracle team, staff and hospital, if anyone is considering transplant they are the caring, professional and kind ones..she and all of us love them all. Just wanted to touch bases that we are doing well, and I hope to be back again with the support group if I am allowed. You were absolutely the kindest especially in moments of panic right after the transplant..you’re so calm and helpful..so many blessings to you and all the caregivers and their loved ones. Marian

@robertj936, As a mother and as a patient who has received a liver transpant, I can feel your frustration and anguish with the current situation regarding your son. I am sorry that you are getting turned down by transplant hospitals at this time, however the reason it that excess alcohol consumption is a disqualifying condition. Alcohol is toxic to the liver and a potential recipient must first prove that he/she can refrain from alcohol.

I would like to share this link with you/and your son. He is not alone. Please join the conversation and discover how others are working to qualify for transplants.
- Alcohol Withdrawal Program Required for Transplant
https://connect.mayoclinic.org/discussion/alcohol-withdrawal-program-required-for-transplant/
Has his doctor encouraged him ot seek alcohol counseling?

Jackie, What did you decide about taking the Gabapentin? My son took it for a period of time after spine injury and don't know if he had side effects, but it was part of his recovery process.
Like you and @edwardwallace, I accept that medications have side effects, but not everyone experiences the same reaction to the meds. I guess what I'm saying is that it is a balance of risk vs benefit.

@jackie421blfdgurl - If you are still undecided, here is an idea for consideration: Talk to your doctor about trying the medication for a few weeks, and then checking in with him to report how you are responding. Then you can decide whether to continue, or to stop.
Does that sound like something you would consider trying?

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....

I appreciate you very much!! Thank you for all the information. I do have an account with Mayo Patient Portal.

I trust I will be in good hands, however, I’m nervous about the appointment.

It’s reassuring to know that you had a successful transplant!

Annie, If this is your first appointment/meeting with the transplant team, it is possible that there is not a defined schedule.
When I had my initial appointment with my local transplant dept in KY, it was a long day that included labs, consults and meeting member of the team like social worker, nurse, dietician, and a transplant surgeon. The entire process was explained, and my husband and I had the opportunity to ask questions. It was a long day, but a very informative day. It was frightening and also comforting. We learned that there was a whole team of people who were experts with the medical knowledge who were there for us. We became part of a team that day!

However, if this is an appointment for the evaluation to determine eligibility for the transplant wait list, it involves several days of medical scans/tests. For this "evaluation" you will have several days of scheduled appointments. Many transplant patients call it a marathon. And if this is your situation, I suggest that you contact Mayo about schedule.

Have you signed up on the Mayo Clinic Patient Portal yet? You should be able to do that as soon as you receive your patient number. It is where you can access your Mayo information, including scheduling.

Annie, I transplanted at Mayo Rochester, and I know that you are going to be surrounded by the best of care at Mayo Phoenix!❤️