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.

@rosemarya

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?

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Hi. Thanks for thinking of me.
I decided not to take them. If it is the tacrolimus..then that has to go and get onto something else. I am meeting with my liver Dr. In 3 weeks and will keep u posted. Your a doll...have a good day

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@rosemarya

@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?

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@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

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@mariancauwel

@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

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@cehunt57 Thank you for your hug, just so want you to know you being a beautiful part of this support group helps so much, especially to all of us that are new, can’t tell you right after transplant of Marlo, as her caregiver I was so worried, need reassurance so badly, the Mayo doctors, transplant team, nurses are so knowledgeable kind and wonderful, but to have someone whose experienced it all, and you are just so relatable. Thank you from all of us who need you and thank you for your calm. Marian

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@anniejax04

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

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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!

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@susanrmnp

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!

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@anniejax04
Hi Annie, my daughter had a kidney and pancreas transplant almost 8 weeks ago, at Phoenix campus she wrote down all her concerns, they are so thorough, you speak to all the specialists, the tests cover everything, if ever you want the best it’s the Mayo, it’s scary at first but the outcome for a 2nd chance at life the Mayo transplant team are truly there for you..it’s all very individual the transplant, the healing, living with the caregiver, we tried to cover all bases with back up caregivers, one who just took to follow up labs doctor appointments, one helped with grocery/ water, me, who was hands on at home, but she is doing very well, it’s so individual but she hasn’t had an insulin shot or dialysis since transplant. Of course we are human but having a positive attitude is important and staying close to your Faith, that gave us so much strength..don’t be afraid to ask any question, but from us who have been thru it and 8 weeks of healing, the Mayo is the best. Will keep u in prayer. Marian

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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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Corey,
Hang in there things will get better trust your Mayo team
God bless

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