Liver transplant - Let's support each other

Hi, @jinja320! Welcome to Connect. I am happy to meet you and excited to be the first one to say "Hello" to another liver and kidney recipient!

I am a liver and kidney transplant recipient. I got both organs in a simultaneous transplant surgery in 2009 from an anonymous deceased donor. I had Primary Sclerosing Cholangitis (PSC) and I was 60. I read that you were 17 for your 1st transplant. I must say that you are an inspiration to me - because you are willing to share your story which gives hope to others who are undergoing their own transplant journey.

@jinja320, As a member on Connect, you are able to join into any discussion, anytime with a comment or a question, or an emotion (Like, Helpful, Hug) You mentioned a 3 year anniversary coming soon. Here is a group that I thought to share with you.
- Happy "Transplantiversary"!
https://connect.mayoclinic.org/discussion/happy-transplantiversary/
Did you have a living or deceased donor(s)?
Are you comfortable to share a little about the reason for the 2nd transplant?

@klm3, How soon is too soon? That is a great question and I hope that you will learn the answer to that when you have your evaluation. Each of us is unique and our liver condition as well as related health issues.

I have a deceased donor. I have never heard mention of donor height being a consideration in the match. I urge you to read the information that @jamesduaiswamy has shared.

Here are some links that you will find helpful as you wait for your scheduled appointment:
- Living-donor transplantation
https://www.mayoclinic.org/departments-centers/living-donor-transplantation/overview/
- Transplant Blog - with Living Donor Toolkit
https://connect.mayoclinic.org/blog/transplant/
@klm3, Do you have any questions as you proceed toward evaluation? How can we help you prepare?

New to Mayo Connect, My therapist thought it would be great to talk others who have been in my situation. I've had two liver transplant, the first i had at 17 years old and im approaching my 3 years anniversary of the second transplant. I had a kidney transplant the same time of the second surgery( during Covid). I couldn't remember what recovery was like after my first surgery but this second time around was an experience. The weight gain form being home for 6months was not fun, im still strugging to maintain a size im comfortable with but with prednisone nothing is certain.
Lets talks i'd be happy to share my stories with anyone who are awaiting surgery or post.

Hello

Congratulations

I am a post live donor liver transplant recipient.
Most of the evaluations are done by the hospital transplant team. There are certain criteria they look for but height may not be one of them.
There are many requirements for liver transplant surgery. Before you can begin the liver transplant evaluation process, you must be free of:
• Cancer outside the liver
• Alcohol for at least 6 months
• Substance abuse
• Active infections
• Disabling psychiatric conditions
• Documented medical non-compliance
• Lack of adequate social support
• Lack of adequate insurance
• Other diseases or conditions
You must also be willing and able to make lifestyle changes to support the gift of life that a liver transplant provides
Also, I find that your MELD score is not high enough to get to the waiting list, however, it depends on the evaluation of the Transplant surgeon and the team for both parties.
There are several processes the hospital employs to get to you the transplant stage.
Please note assuming you reach the transplant date it is almost an 11 hour surgery and about 6 hours for the Donor.
Best option, please consult the hospital for further advice.
You will be fine, just take one day at time.

Hello - If anybody can help me that would be great. I am fortunate enough to have a relative open to potentially being a liver donor. I have been referred to Mayo Phoenix and will hopefully be able to get a consultation in a month or two. Does anyone know what the height differential is for a donor? - for example: do you have to be within 8 inches of each other? And, how soon is too soon? My MELD is around 12. Our blood types are compatible.

Thanks for any help.

Hi
Hope you are keeping up your hopes very high, which is a must in a situation such as yours.
When the MELD score is in the range of 34, one is already in the system to get a liver. It could happen anytime and depends on the matching profile of the donor or the source of the liver.
Also, it depends on the Hospital too. In my case the doctors were really keen in finding a liver and during my hospital stay, there were almost 20 patients were with me pre or post surgery. I had mine at The University of Virginia Hospital in Charlottsville VA. Just believe in your self. You will be just fine. I sincerely hope all will work out well. take care

What calmed my fears was after my first evaluation at Mayo being informed, I was not sick enough that time to be listed. That now I was part of the Mayo transplant program scheduled six months later for re-evaluation. That gave me hope again.

@paula01 - Hurray to your gastroenterologist for arranging for your appointment at Mayo Jacksonville! Hurray for the Mayo social worker who took your husband to the Second Chance Support Group! Hurray for your successful liver transplant! And Hurray to Gerry @gerryp for introducing you to Mayo Clinic Connect! I extend my hand in a virtual germ free hand shake of Welcome.

@paula01, I would love to help you get started and help you to find your way around Connect. I already can see that your experience and your willingness to help others is going to provide a message of hope to everyone who reads it.

It has been 3 years since your transplant (Happy Transplant Anniversary) and so I want to invite you to think about sharing your story in a group dedicated to our stories. I have shared some writing ideas at the beginning of the group and you can read inspiring stories that others have shared (I wonder if you will know any one?)

- Organ Donation and Transplant: What is Your story?
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/
How about this one:
- Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
Paula, I have never been part of either an in-person or a zoom support group, I think I would have enjoyed being able to see and hear. I joined Connect after my transplant when I came across it during an online search. I like to think of us sitting around the kitchen table with a cup of coffee while we can chat or listen to what the transplant experience is like for a patient. Connect is available anytime of day or night, and the coffee is always hot. Everyone is welcome.

What is something that you wish you knew before your transplant that might have calmed your fears or aided your recovery?

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

The therapist is great and he understands because he took care of his brother through two kidney transplants. No he really doesn't have anybody to open up to. I've been there through all of this but it's hard for him to open up to me. Really upset with him right now because he's still smoking. He thinks since he made the transplant list they won't test him for nicotine anymore. I feel like they will still test him until transplant time, and that could be a deal-breaker. I know he's using that as a stress reliever, I can't seem to get through to them how important it is to quit.