Liver transplant - Let's support each other

@lmctif Hello 🙂 my dad is going through liver failure right now and we’ve been looking into living donation so I can give him a part of my liver. We were told he had to go through the list and be put on it for a cadaver liver before mine will be considered. Can you help clarify that a little please? I don’t understand if he has to find a cadaver match before using mine or if he just has to be on the list before other options are considered.

@parmcat Congratulations on your first liverersary. I hope you did something special to celebrate, it is basically like being reborn. I was only called one time so I don't know the agony of getting called and then having your hopes dashed. It must be discouraging.

The letter to the donor family was the most difficult thing I have ever written. Trying to express such extreme gratitude at the same time as expressing sympathy for their loss is almost mind-boggling. I wrote the letter three or four months after my transplant and received a letter back from them a number of months later.
JK

@mathewsw
In answer to your question I did some research and found that according to UNOS there have been NO LDLTs in FLA since 2012 (this includes Mayo) and for PHX MAYO they are continuing to perform them sporadically over the past few years. And finally, ROC MAYO did 15 in 2018 so they are still going strong.

I had my LDLT @ Mayo PHX back in 2013. My wife was the donor and the liver lasted over 5 years until Biliary complications arose and it necessitated a need for us to relocate to JAX where I, only a few weeks ago, received a cadaver liver.

Any supplements that are recommended? I have PBC and autommune hepitis. I am 51 and was diagnosed at 27.

Parmcat, Those sound like perfect plans for a reflection and cdlebration of your life!
I wish you many more liversaries in the coming years.

I tagged you to a conversation where you can find some additional information and links where patients are sharing their letter writing thoughts.

Happy Liverversary!

Hi Rosemary,

Yes....1 year ago today I was called for the third time to attend the hospital for a potential liver. Third time was the charm

Tomorrow is my first liverversary. My plan is to spend the day with my family and reflect and celebrate life.

I have also decided that I am now ready to send a note to my donor family. I am trying to formulate the words, but I am finding it difficult.

@rosemarya and @matthewswill,
Thanks for the great question. The Florida clinic doesn't do living donor liver transplants, but they have a very active deceased donor liver transplant program. While transplant from a living donor is an excellent alternative to a deceased donor, each procedure comes with certain risks: http://www.mayoclinic.org/tests-procedures/liver-transplant/basics/risks/prc-20014076. The risks of living donation should be weighed against the risk of waiting for a matching organ from a deceased donor.
Mayo Clinic Florida is in a region of the country that is fortunate to have a higher rate of livers from deceased donors compared to other regions of the country. As a result, at Mayo Clinic Florida, the average wait time for a liver transplant is about 3 months (significantly lower than national average). At Mayo Clinic Florida, we are able to transplant patients sooner than most other transplant centers in the country and achieve outstanding outcomes without subjecting living donors to the risks of liver donation.
Living donor liver transplant remains an option for patients who will not likely receive a liver transplant from a deceased donor in a timely manner. Though we do not offer living donor liver transplant at Mayo Clinic Florida, it is an option at our campuses in Minnesota and Arizona. I hope this answers your question. Have a wonderful day!
-Kristin

@gaylea1 congratulations! I'm so happy for you!!

Parmcat, I am excited to read about your plan to begin a support group in your area. I love your plan to meet on clinic day.

I do not have a support group in my area, but there is one at the transplant center 50 miles away. It is only for those who transplanted there. That excludes me. Like you, I found Mayo Connect when I stumbled on it when I was looking for someone who had transplanted for same liver disease as me.

I see that you have a big day coming up! What do you plan to do to honor the day?