This and That and Talk - My Transplant
As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.
Drop in and say 'Hi'. You are welcome anytime.
What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?
Interested in more discussions like this? Go to the Transplants Support Group.
Good Morning and Welcome to Connect. I send your brother my thoughts and hopes for continued health and I admire his attempt to be a donor for you. And for you, @abel I send my hopes and some resources to help you with your future decisions.
In answer to your question about the amount of wait times, I refer you to the Scientific Registry of Transplant Recipients (SRTR) where you can access national data. Here are 2 articles that can help you to get started.
January 2018 Program Summary Report Highlights
https://connect.mayoclinic.org/page/transplant/newsfeed/january-2018-program-summary-report-highlights/
Transplant Resource: Using the Scientific Registry of Transplant Recipients
https://connect.mayoclinic.org/page/transplant/newsfeed/transplant-resource-using-the-scientific-registry-of-transplant-recipients/
@abel Welcome to Connect! No doubt you are both very disappointed to receive that news, that your brother cannot donate to you. I cannot give you much information about other states, except to say each transplant center has their own criteria. You would have to go through testing again, specific to that center. If you are a veteran, check with the VA, as they will transport you to other states for a transplant. Please let us know what state you are in?
Ginger
Hello thank you for reading my post. I’m located in New Jersey.
I’m actually 30 years old and thanks for the help and resources that you are giving me. I’m trying to see all my options open.
@abel, I commend you for doing a thorough investigation of your options.
Whenever you have a question, I invite you to post it, and I or other members who share a similar experience are always here to share. And, always, you are welcome to join into any of the discussion groups at anytime, We are here 24/7 🙂
Hi @abel, Here is a blog post written by our Transplant Team answering many of the questions you ask about out-of-state transplantation at Mayo Clinic.
- Q&A for Out-of-State Patients https://connect.mayoclinic.org/page/transplant/newsfeed/qa-for-out-of-state-patients/
@ghayden777 thanks your brother sure has gone more than his share of problems. It’s wonderful though that he is finally to able to have a transplant and that you will be there for him..
I wish you both a speedy recovery, and that the surgery takes place soonJK
@fauneconner definitely sounds like it is time. What a relief it will be for you and your husband.
JK
I would like to hear more from people who have already had liver transplants - what's the best/worst of the long term experience? Had liver failure four months ago, now MELD 27 or so. Up and down a lot of days. Hard to predict energy levels. Just doing the liver transplant evaluation tests. Am wondering what life might be like after the proposed transplant.
Hello @autoimmunecirr and welcome to Mayo Connect!
I am sure that Rosemary, @rosemarya, and @contentandwell will be in touch with you shortly. They are both active members of Connect and have both had liver transplants with very good success. I'm sure you will feel encouraged by them relating their experiences with you.
In the meantime, I encourage you to look through the many discussions in the Transplant group and read the ones that deal specifically with pre-transplant discussions.