← Return to Liver transplant - Let's support each other

Discussion

Liver transplant - Let's support each other

Transplants | Last Active: Jun 22 9:17am | Replies (1606)

Comment receiving replies
@rosemarya

@paula01, Welcome to Connect! It is exciting to read that you have already connected with @gerryp in a zoom meeting. And now we are all delighted that you have joined Connect, Mayo's online support community. Members come from all over the world to share their experiences and support each other.
I had my liver and kidney transplant in 2009 at Mayo Clinic in Rochester after being flown there from my home transplant center in Kentucky. I had Primary Sclerosing Cholangitis (PSC).

As a new member, I can understand feeling lost. Here is the link that will help you get started. Be sure to look at the section: How to Get Started to learn how to: Follow a group, post a message and discover your network. Learn how you can get the most out of Connect in this step-by-step guide.
About Connect: Who, What & Why About Connect
https://connect.mayoclinic.org/blog/about-connect/tab/aboutconnect/

Paula,
What brings you to Connect? Are you a recipient, a caregiver, or are you waiting for a transplant?

Jump to this post


Replies to "@paula01, Welcome to Connect! It is exciting to read that you have already connected with @gerryp..."

I'm a Mother and caregiver for my adult Son that's waiting on liver transplant list.

Hello Rosemary
I am trying to catch up this was sent to my spam. I had non-alcoholic steatohepatitis (NASH) with a trans jugular intrahepatic portosystemic shunt (TIPS) and an inferior vena cava (IVC) filter procedures done at a different transplant center. There I was informed after the (IVC) procedure that their transplant committee voted not list me with United Network for Organ Sharing (UNOS) for liver transplant because I was too anxious and depressed. I was told in a year to call back and I could possibly be considered for revaluation then they walked out of the room not to be heard from again. This infuriated my gastroenterologist in Tallahassee FL who had diagnosed the (NASH) in 1992. He called Mayo Jax and arranged an appointment for me at the Mayo Clinic Liver Transplant Program. I was accepted into program 2018 and transplanted at Mayo Jax 3 year ago Valentine’s Day 2020. Covid started so all support groups stopped my husband was lucky a Mayo social worker took him out of my ICU room to the Second Chance Support Group of Jacksonville FL meeting for pre and post liver and kidney transplants at Mayo clinic. Mayo after closing group meetings started the zoom meeting every Tuesday where I have received a lot of support and help from members in the group. I would like to try and give back helping others from my journey of having no hope new hope not on the (UNOS) list informed when admitted into Mayo Hospital Feb. 7th by my clinic surgeon I would not go home becoming listed and transplanted within a week by the grace of God. Gerry said something about this group last week during the zoom meeting so we thought we would give it a try.
Paula