Liver transplant - Let's support each other

@klm3 - Welcome to Connect! I work with the doctors and nurses in the transplant center at Mayo. For living donors, the beginning first few steps of the process can be done remotely. The potential donors can fill out our online form and if they chosen as a donor, they can have their bloodwork done locally to be sure they are a match and healthy enough to continue the process. Once those results are reviewed by Mayo, the donors can also do any routine preventative care locally that they might be missing such as colonoscopy, mammogram, skin checks, etc. These are things they may already have done if they are keeping up with their preventative care. Once they have their bloodwork approved by the team and are being considered a potential donor, that's when they will need to travel to the transplant center for consultations and testing. The transplant team needs to meet the donor in person to assess their health and willingness to donate. So in short summary, some tests can be done at home but generally the consultations need to be done at Mayo. I hope that's helpful information for you. The team will go over all those and other details once you are approved for transplant.

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.

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?

Hello

You survived two transplants and that is just amazing.
Its not fun, the processes one has to go through after surgery.
It is very regimental and to the point and no deviations.
I had my transplant almost 4 years and 4 months ago. I am still around not sure how long, but I dont think about it. Just take one day at a time and be thankful God let us to keep breathing.
You may want to start a strict workout program to keep your health and weight in good shape. Trust me it is really tough to lose weight.
But you will be ok.
Take care and God Bless

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 @klm3

My first transplant was through living donor. I was 17 years old and my donor was my father, he was 40. At that time we were no where close in height. I know the size of the organs matter but im not sure it has anything to do with height. My second donor although he was deceased he was also much taller than I was. He was 18 and i was 37.
I hope this helps a bit.

All the best with your consultation and I hope your surgery goes well if you decide to go ahead with it.

Thank you for the Welcome!
My first surgey was done by a living donor. My father gave me a piece of his liver and i was blessed that have that for 20 years. My second surgery i got both Liver and and Kidney from a cousin of who passed away. It was a true miracle how fast the second surgery happened. With in a week or two of being told I needed a transplant I got a call one day that my cousin's parents wanted to donate to me.
I was also diagnosed with PSC. Its wonderful to meet someone else with the same diagnosis. I'm glad things have been working well for you. I pray it continues.

Jinja

@jinja320, I joined Connect because I wanted to meet someone else who had received a transplant due to PSC. I was monitored for nearly 8 years before I needed to be listed. I was inactivated when cholangiocarcinoma was suspected. My kidneys failed before I got a cancer free diagnosis. I was flown from ICU in Kentucky to Mayo Rochester to see the PSC specialist there. UofKy was not doing living liver transplants in 2009, so it was not an option. Then when I got to Mayo and was able to be reactivated on the transplant list, I needed a liver and a kidney, so the transplant list, living donation was not an option. I will never forget the phone call from my surgeon when she rold me that there were organs for me! I am forever grateful for the anonymous donor who gave me a new life.
I do not have Ulcerative Colitis although I have read that not everyone with PSC gets it. Did you have UC before your transplant?

@klm3 - Welcome to Connect! I work with the doctors and nurses in the transplant center at Mayo. For living donors, the beginning first few steps of the process can be done remotely. The potential donors can fill out our online form and if they chosen as a donor, they can have their bloodwork done locally to be sure they are a match and healthy enough to continue the process. Once those results are reviewed by Mayo, the donors can also do any routine preventative care locally that they might be missing such as colonoscopy, mammogram, skin checks, etc. These are things they may already have done if they are keeping up with their preventative care. Once they have their bloodwork approved by the team and are being considered a potential donor, that's when they will need to travel to the transplant center for consultations and testing. The transplant team needs to meet the donor in person to assess their health and willingness to donate. So in short summary, some tests can be done at home but generally the consultations need to be done at Mayo. I hope that's helpful information for you. The team will go over all those and other details once you are approved for transplant.