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.

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

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@parmcat

@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!

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

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@gaylea1

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

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

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@parmcat

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

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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?

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@gaylea1

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

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

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@rosemarya

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

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@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

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@rosemarya

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?

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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.

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@parmcat

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.

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Happy Liverversary!

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@parmcat

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.

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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.

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

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