Liver transplant - Let's support each other

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

@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

@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

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!

@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

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

Hello everyone,
A Canadian, I had a live donor liver transplant 9 years ago and things have gone so very well (thankful). Have just had repeated blood results showing ultra high AST (500 on CDN scale) and other liver enzymes in the "HI" range. Does anyone have experience with the potential causes for this surprise result?

Good morning from a fellow Canadian.
I had my liver transplant in October 2020. I remember the Dr's saying that besides liver issues there are lots of reasons for an increase in your liver numbers. The big one I remember is rheumatoid arthritis. Have you seen a rheumatologist yet? I know back 12 years ago when I was first diagnosed with primary biliary cholangitis they thought I had arthritis due to the extremely high AST. 🇨🇦

Removed from unos by mayo clinic jacksonville due to 8 months of evaluation uncovering pulmonary thrombosis issue preventing transplant of liver. OK. Went to miami transplant institute as per suggested by mayo clinic jacksonville. Due to my diligence expediting the current medical records to miami, I was accepted in initial interview with transplant surgeon and now having to listen to blame game by both jacksonville and miami on why miami has not (says them) received cd with all current imaging. I am getting sicker by the day and running up on age deadline for surgery. I am exhausted physically and mentally from this stress and having a hard time staying positive when my life is literally in the hands of others. Not a fun story here.

@jmp1234, I'm just catching up with your situation. I hope the CD with all updated imaging has been received since you posted this. Following up with logistics is exhausting, especially when you're sick. Let me know if this has been resolved now.