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.

Kristin Eggebraaten | @keggebraaten | Dec 6, 2018

In reply to @rosemarya "Matthewsw, Welcome. I want to ask @keggebraaten or @NatalieR for their input. Are you currently on..." + (show)

@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

jodeej | @jodeej | Dec 6, 2018

In reply to @gaylea1 "@parmcat Hello! I finally got my transplant last Wed night at UH. Lots to learn!" + (show)

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

Rosemary, Volunteer Mentor | @rosemarya | Dec 5, 2018

In reply to @parmcat "Awesome!!! I am so happy for you!!!!!!!" + (show)

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?

parmcat | @parmcat | Dec 5, 2018

In reply to @gaylea1 "@parmcat Hello! I finally got my transplant last Wed night at UH. Lots to learn!" + (show)

Awesome!!! I am so happy for you!!!!!!!

gaylea1 | @gaylea1 | Dec 5, 2018

In reply to @parmcat "@gaylea1 Hello there. I am sorry fir the slow response. In my haste in joining this..." + (show)

@parmcat Hello! I finally got my transplant last Wed night at UH. Lots to learn!

Rosemary, Volunteer Mentor | @rosemarya | Dec 5, 2018

In reply to @mathewsw "@rosemarya I recently was informed by my Liver Transplant Team that they no longer do Living..." + (show)

Matthewsw, Welcome. I want to ask @keggebraaten or @NatalieR for their input.
Are you currently on the transplant waiting list in Mayo JAX?

mathewsw | @mathewsw | Dec 5, 2018

@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?

parmcat | @parmcat | Dec 5, 2018

In reply to @gaylea1 "@parmcat Hello! Hi am in London Ontario waiting for a transplant. I have never see anyone..." + (show)

@gaylea1 Hello there. I am sorry fir the slow response. In my haste in joining this group, I forgot to bookmark the site, and lost the page. Please feel free to reach out to me anytime. I hope to have the support group test run in January. If you would like to chat about anything, please contact me here at healthylivering@gmail.com

That is the email fir the group, but it is just being rolled out.

All the best!

Rosemary, Volunteer Mentor | @rosemarya | Nov 24, 2018

In reply to @jeanne5009 "@rosemarya Just wanted to wish a Happy Thanksgiving to all my Mayo Connect friends. We all..." + (show)

Happy Thanksgiving EveryDay to all of the Mayo Connect Transplant Members who generously share their love and messages of hope and support with each other.

Have you seen the discussion post: Just Want to Talk: I never thought I'd be thankful for ...
https://connect.mayoclinic.org/discussion/i-never-thought-id-be-thankful-for/?pg=1#chv4-comment-stream-header

I invite all of you to click on the link, and share your ideas!

gaylea1 | @gaylea1 | Nov 22, 2018

In reply to @parmcat "Hi there, I just stumbled on this thread. I am almost 1 year post liver transplant..." + (show)

@parmcat Hello! Hi am in London Ontario waiting for a transplant. I have never see anyone on this site before from our area. I joined connect at Mayo about a year ago as I had no support group here in London. This site has been helping me along my journey. They have been invaluable in support and advice. I was put on the wait list July 10th 2016. My MELD score is 30+ and am still waiting for a match. I would love to hear about your experiences with the transplant clinic at UH. I would love to hear frm you.