Liver transplant - Let's support each other

Liver transplant patient

@randallscott1 - Welcome to Mayo Connect!
I am excited to meet another person with a liver transplant. I actually have 2 organs, liver and kidney, and I received my transplant at Mayo Rochester in 2009 . I live in Kentucky and I had PSC (Primary Sclerosing Cholangitis) that caused my liver and kidneys to fail.

Randall, what about you? When? Where? What would you like to share or ask about your transplant?

Hi @vera77, you are asking very good questions that will need careful consideration for doing a transplant in US when you live elsewhere. There is a period of time directly after transplant that you as the caregiver and your husband would need a short-term stay near the clinic where you get the transplant as well as regular follow up appointments.

Mayo Clinic staff have written these blogs that outline a bit more detail about liver transplant at Mayo.

- Liver Transplant at Mayo Clinic https://connect.mayoclinic.org/blog/transplant/newsfeed-post/liver-transplant-at-mayo-clinic/
- What to Expect: Post Transplant Care https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-annual-post-transplant-follow-up/
- What to Expect as a Transplant Caregiver https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/

@rosemarya @jerrydrennan @amyintucson @arqui02000 @2ndlvrxplantmom @karen51 @parrot53 @eparker6 and many others can share their first-hand experiences with post liver transplant care and short-term stays.

Are you thinking of applying to Mayo Clinic for transplant?

I coloured my hair before and after transplant..(now 20months post transplant) and never had any issues. Make sure she has a patch test before leaping in to the full monty though. X

My kidneys failed after liver transplant for PBC, I ended up with cirrhosis of the liver.
Thought my kidneys may pick up but they haven't so now I am waiting for a kidney transplant.

@janni1, I can't even imagine how you must have felt when you found out that you kidneys did not recover after your liver transplant as hoped. My kidneys did not respond to dialysis prior to transplant, so I had both organs at the same time. Are you currently on dialysis? or will you need dialysis? How does the listing/wait work, since you already have a transplanted liver?
Are you currently on the active kidney transplant list?

What questions do you have as you prepare?

@vera77, I had my simultaneous liver and kidney transplant at Mayo Rochester MN in 2009. My home is 800 miles away. We stayed at the Gift of Life transplant House during my time there. Due to my condition we arrived in late February. My transplant was on April 22, and I spent 7 days in the hospital. At discharge, I went back to the Gift of life House and had frequent labs, and tests as outpatient. I returned home in mid May to continue my recovery and healing.

After transplant there are regularly scheduled labs that begin weekly, and gradually are spaced farther apart. Labs are drawn locally and results sent to Mayo. I returned to Mayo after 4 months, and again 1 year after my transplant. I was given the option of being transferred to my local transplant center for monitoring, but chose to continue with Mayo and I return annually.
My Primary Care Doctor takes care of me locally, and he is willing to follow Mayo's follow-up plan for me. I've only had one emergency hospitalization here, and the hospital and doctors were in contact with the transplant doctors at Mayo during my stay.

Vera, this is just a snapshot from my perspective. I hope that you will look at the links that Colleen has sent to you. I also want to let you know that Mayo does have an International Department.

Here is the link to the Liver Transplant Department and Contact Information
- Liver Transplant Program / Contact
https://www.mayoclinic.org/departments-centers/liver-transplant/home/orc-20211818

I decided to create a group message, but I'm thinking that a group hug would appropriate for all of us who are friends thru transplant.

@arqui02000, It's been a while since I've seen you here. How are things going? Do you have any updates about your possible need for a 2nd liver transplant?

@nrbecerril, I know that you have been struggling with a cold, and I hope that you are feeling better. You asked me about tea, and in all honesty, I don't know that I qualify as a tea drinker because I use tea bags in a cup of hot water - Lipton or Bigalow which are available at my grocery store. Will you let us know why your doctor told you not to drink tea (after you see him again).

@gaylea1, I am so very happy to see that you are on Connect! I remember when you were waiting for your liver transplant. And I remember when you told us that you got your Call and were on the way to the hospital for your transplant. How long ago was that? Do you remember doing that?

@rosemarya I remember this like it was yesterday. That was a long 18 months wait. I had so many symptoms and so many questions. I was so sick I just wanted it to end at times. That was over 6 years ago. I had my transplant on Nov 28 2018. I'm coming up to 5 years post now and today is my birthday. I've become a Grandmother for the first time (Aug 20th 2023) and I'm looking forward to many more grandchildren. I hope you are well and living your best life.

I am 9 months post liver transplant, becoming very disappointed, just told my pancreatic is not working good. Never ending, has any one else had problems with pancreatic?