Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

@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.

Liked by jeanne5009, parmcat

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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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@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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@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.

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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 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

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@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.

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@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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I know they do it at the Minnesota location and the Arizona location. My dad and I are looking into this as an option as well

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@bwebster93

@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.

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Good Morning, bwebster93. I am extending a virtual handshake across the miles to welcome you to Connect. I am a liver/kidney (2009) recipient of a deceased donor. While I understand what your dad is experiencing now, I do not know the answer to that question.
However, I do want to link you to the Mayo Connect Transplant Pages where you can access the Living Donor and Recipient Toolkits. https://connect.mayoclinic.org/page/transplant/

Let me know what I can do to help you along the way. I am happy to share what I have experienced, as well as locate the information that you might need.
Not all transplant centers offer living organ transplants. Is your dad being seen at a transplant center? Do they offer living donation?

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@bwebster93

@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.

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My son is decompensating and getting closer to needing a transplant. Our center does living donor transplants. We were told he would need to be evaluated before they would consider transplanting him. He is stage 4 cirrhosis but still not bad enough that they would transplant him now even with a living donor. Could be your center meant he needs to be evaluated and ready to go on the list. Maybe go back and ask them to be more specific. Best of luck to your Dad. And God Bless you for offering to be his donor. Prayers you are the perfect match!

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@rosemarya

Good Morning, bwebster93. I am extending a virtual handshake across the miles to welcome you to Connect. I am a liver/kidney (2009) recipient of a deceased donor. While I understand what your dad is experiencing now, I do not know the answer to that question.
However, I do want to link you to the Mayo Connect Transplant Pages where you can access the Living Donor and Recipient Toolkits. https://connect.mayoclinic.org/page/transplant/

Let me know what I can do to help you along the way. I am happy to share what I have experienced, as well as locate the information that you might need.
Not all transplant centers offer living organ transplants. Is your dad being seen at a transplant center? Do they offer living donation?

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Hello! Thank you for the response and the offer for help, both are greatly appreciated. We thought the center he was at offered living donation as an option but we just found out they make you go through a waiting list first. So we’re trying to redirect our game plan and figure out what’s next.

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@rosemarya

Good Morning, bwebster93. I am extending a virtual handshake across the miles to welcome you to Connect. I am a liver/kidney (2009) recipient of a deceased donor. While I understand what your dad is experiencing now, I do not know the answer to that question.
However, I do want to link you to the Mayo Connect Transplant Pages where you can access the Living Donor and Recipient Toolkits. https://connect.mayoclinic.org/page/transplant/

Let me know what I can do to help you along the way. I am happy to share what I have experienced, as well as locate the information that you might need.
Not all transplant centers offer living organ transplants. Is your dad being seen at a transplant center? Do they offer living donation?

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Hello Rosemary. I'm fairly new to Connect. I want to thank you for being a mentor for transplants. Your insight and willingness to share is extremely beneficial to those of us heading to transplant. I appreciate you providing the pages for Living Donor and Recipient Toolkits. Great information. Again, thank you for your time and expertise. I'm sure I will be coming to you quite often in the very near future.

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@bwebster93, @stella25, Here is something for you. I recommend that you view the webinar.

Top Takeaways from "Transplant 101: Preparing for Your Journey"
https://connect.mayoclinic.org/page/transplant/newsfeed/icymi-key-takeaways-from-transplant-101-preparing-for-your-journey/

Liked by stella25

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