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.

Thank you so very much, Rosemary! I am ok with the procedure. Mayo has liver biopsies down to a tolerable experience. I have had several through the years. It's more the 40 mg of Prednisone that has been rather distracting. LOL Hugs back.

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I'm in FL and would love to be part of the group. Anyhing about HE interests me. I am ESLD and have moderate HE. Meld is 8 and Mayo sees me every 6 months unless needed.

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@jeanne5009

I'm in FL and would love to be part of the group. Anyhing about HE interests me. I am ESLD and have moderate HE. Meld is 8 and Mayo sees me every 6 months unless needed.

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I go to mayo mn,and evey 3 months my meld is 19. And get HE often. I get it so bad i spend days in the hospital and even been transford to bigger hospital's

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@jeanne5009

I'm in FL and would love to be part of the group. Anyhing about HE interests me. I am ESLD and have moderate HE. Meld is 8 and Mayo sees me every 6 months unless needed.

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I'm in florida and am supposed to go to my eval visit March 10

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The process and what to expect with support resources, caregiver, financial, medication, transportation, etc.

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@mathewsw

@rosemarya I recently was informed by my Liver Transplant Team that they no longer do Living Donor Liver Transplants at Mayo Clinic Jacksonville. It sort of caught me off guard and I completely forgot to ask if that was also the same at the other two Mayo Clinic locations. Does anyone on here know?

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@mathewsw I also found out that although I have 2 children willing to donate, Jacksonville no longer does this. I was thrown for a loop since I assume this will make the process much longer if they had been a match.

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@beckyy39

I'm in florida and am supposed to go to my eval visit March 10

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Im in Minnesota and go to mayo march 16th and 17th

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@racing212

Im in Minnesota and go to mayo march 16th and 17th

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@racing212,
Are you going for a routine checkup, or will you be going for transplant evaluation?

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Rutine check up. Last one was in September. Im leaving on the 15th

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@beckyy39

The process and what to expect with support resources, caregiver, financial, medication, transportation, etc.

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@beckyy39,
For your evaluation appointment, one of the first things that I would advise you is to get a good sturdy notebook and a sturdy folder for storing all of the paperwork and information that you are going to collect before, during and after the evaluation. Also get a sturdy water bottle to carry with you. And comfortable shoes because you will be doing lots of walking.

With appointments at Mayo you will receive a schedule packet which will also tell you all about each procedure on your schedule. You will look at the appointment schedule and wonder how all of that can be possible in a span of a couple days. Trust me, it will!
I know that our members are going to have ideas of their own to help you along the way.

In the meantime here are some links I think you might want to look at.

-TransplantsTransplant Evaluation - What to expect
https://connect.mayoclinic.org/discussion/transplant-evaluation-what-to-expect/
- Getting Listed for Transplant
https://connect.mayoclinic.org/page/transplant/newsfeed-post/getting-listed-for-transplant/https://connect.mayoclinic.org/page/transplant/
- Transplant Pages - https://connect.mayoclinic.org/page/transplant/ -is a part of Connect that is put together by the transplant staff. I consider it a "must read" and keep it in my favorites folder. If you scroll thru the newsfeed posts, you are going to find articles that will provide good reading about topics like -Getting Listed for Transplant
https://connect.mayoclinic.org/page/transplant/newsfeed-post/getting-listed-for-transplant/https://connect.mayoclinic.org/page/transplant/
Becky, What is your biggest concern or question about your upcoming appointment? You can ask anything us anything because we want to support you and all transplant patients.

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