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!

@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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@bwebster93 It seems that each transplant center has their own protocol for the type of thing you are referring to. I would call the transplant coordinator and ask for clarification. I too find it difficult to understand why he would need to find a cadaver match before having a living donor. To me, that seems to defeat part of the purpose of having a living donor.
I would love to know what your transplant center says, I think maybe there has been a miscommunication.
JK

Liked by jerrydrennan

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@stella25

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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@stella25 I have always wondered about this, what MELD you need to be at for them to do a living donor transplant. What is his MELD currently?
JK

Liked by jerrydrennan

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@contentandwell

@bwebster93 It seems that each transplant center has their own protocol for the type of thing you are referring to. I would call the transplant coordinator and ask for clarification. I too find it difficult to understand why he would need to find a cadaver match before having a living donor. To me, that seems to defeat part of the purpose of having a living donor.
I would love to know what your transplant center says, I think maybe there has been a miscommunication.
JK

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I believe that the evaluation process is the same because; one must 1st be in need of a transplant ; and 2nd one must be physically able to undergo the complex surgery. Being on the list and waiting for a deceased donor, is (my opinion) standard procedure because we can't possibly be certain that a donor canditate will be an eligible donor.

Liked by jodeej, jerrydrennan

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@rosemarya I am sure, as you say, that the evaluation must be the same and that would include being physically able to undergo surgery, but what seems odd is that he would need to be put on the list for a cadaver liver. If he has a living donor then before anything that person would also undergo testing to determine if they were a good match. From what I understand the main criteria for a live donor for liver is blood type and size, but of course there is also health, both physical and mental. If the criteria is satisfied, why would he need to be put on the list for a cadaver liver? That's what I do not understand.
JK

Liked by jodeej, jerrydrennan

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@mnemeth318

@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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@mnemeth318, Welcome to Connect. I want to express my congratulations on your recent liver transplant. You and your amazing wife have experienced an interesting liver health history together. I want to recognize her for the heroic action she participated in. It is an honor for me to be able to say this!
I hope that your recovery is coming along smoothly for you. Do you live near enough to the JAX Mayo that you can recover at home?

I wonder if you would share with me what kind of Biliary complications arose? I ask this because I transplanted due to PSC which affects the bile ducts. Did you have PSC?

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HI everyone! Thank you for your valuable sharing! My sister-in-law was flown to Florida for emergency care and found that she needs a liver. She is on a liver transplant list and like others was told, it would be a cadaver. She’s #30 on the list. They’re keeping her there at the hospital or the hotel since she needs to be no more than 30 miles away. She lives about 1100 miles away as we do. We’re going to fly down when she gets the word. We can’t afford 2 trips with hotel costs and plane fare, so as much as we would love to be with her now and then, then will be more important we felt. She is 59 years old. She’s very independent, but is welcoming us coming down when the time comes, so we know we need to be there. We would of been there no matter what anyway. Didn’t know anything on transplants and this site has helped us gain some insight. Thank you so much.

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@gramjr1

HI everyone! Thank you for your valuable sharing! My sister-in-law was flown to Florida for emergency care and found that she needs a liver. She is on a liver transplant list and like others was told, it would be a cadaver. She’s #30 on the list. They’re keeping her there at the hospital or the hotel since she needs to be no more than 30 miles away. She lives about 1100 miles away as we do. We’re going to fly down when she gets the word. We can’t afford 2 trips with hotel costs and plane fare, so as much as we would love to be with her now and then, then will be more important we felt. She is 59 years old. She’s very independent, but is welcoming us coming down when the time comes, so we know we need to be there. We would of been there no matter what anyway. Didn’t know anything on transplants and this site has helped us gain some insight. Thank you so much.

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gramjr1, I am reaching across the miles to extend a virtual handshake to say Welcome to Mayo Connect. I'm also sending a hug, because I know from my own experience how much that helps.

I am so very happy that you have found Connect, and I want you to know that you are invited to browse through the list of transplant discussions, and to join in anywhere at anytime with any question that you might think of.

I was 59 when I was listed for a liver transplant locally; I was 60 when I was airlifted to Mayo Rochester after 5 days in ICU (@800 miles). I spent 2 weeks in the Hospital at Mayo, then discharged to stay nearby until transplant. My husband and I stayed at the Gift of Life House for transplant patient/caregiver during the duration of my time in Rochester. In Jacksonville, Florida, Gabriel House of Care in offers low-cost housing for transplant patients and their caregivers. I am sending you this link to the Transplant Hospitality Houses – A Home Away From Home.
https://connect.mayoclinic.org/page/transplant/newsfeed/transplant-hospitality-houses-a-home-away-from-home/

From my own experience, you can support your sister-in-law at a distance by your thoughts, prayers, cards, and email messages of encouragement and love. My husband had to read them to me because, I was too weak to do that. I will honor my 10th anniversary in April.

Holidays Greetings – To all who are touched by Organ Donation
https://connect.mayoclinic.org/discussion/holidays-greetings-to-all-who-are-touched-by-organ-donation/

Who is with your sister-in-law at this time? That person also will benefit from your support.

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@contentandwell

@stella25 I have always wondered about this, what MELD you need to be at for them to do a living donor transplant. What is his MELD currently?
JK

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I don't know what the MELD needs to be for living donor transplant…we will ask that question when we meet with the evaluation team. They have not calculated my son's MELD yet. He was in the hospital last week for an emergency ERCP due to a blockage. That's when his team of doctors suggested he is getting close to being evaluated. We should know more in the next few weeks.

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@stella25

I don't know what the MELD needs to be for living donor transplant…we will ask that question when we meet with the evaluation team. They have not calculated my son's MELD yet. He was in the hospital last week for an emergency ERCP due to a blockage. That's when his team of doctors suggested he is getting close to being evaluated. We should know more in the next few weeks.

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@stella25 when we were looking into my husband having a living donor, his doctor said they wouldn't transplant before his MELD was a 28. That was at Mayo, Rochester. I don't know what it is for other programs.
Blessings,
JoDee

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@stella25

I don't know what the MELD needs to be for living donor transplant…we will ask that question when we meet with the evaluation team. They have not calculated my son's MELD yet. He was in the hospital last week for an emergency ERCP due to a blockage. That's when his team of doctors suggested he is getting close to being evaluated. We should know more in the next few weeks.

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@stella25
When I was told that o needed a liver transplant for cancer. I could get a living donor and shorten the process. I would have to undergo unos protocol. Chemoradiation and brachey treatment be a accepted by unos as a candidate. My niece was the closest match after 5 days of testing at the Mayo in Rochester. They determined the liver size was not adequate for me. But if it was good we could of schedule surgery for transplant. I was at a 25 meld score. I was transplanted at 33 meld deceased donors.
Hope this helps.
God Bless

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@jerrydrennan

@stella25
When I was told that o needed a liver transplant for cancer. I could get a living donor and shorten the process. I would have to undergo unos protocol. Chemoradiation and brachey treatment be a accepted by unos as a candidate. My niece was the closest match after 5 days of testing at the Mayo in Rochester. They determined the liver size was not adequate for me. But if it was good we could of schedule surgery for transplant. I was at a 25 meld score. I was transplanted at 33 meld deceased donors.
Hope this helps.
God Bless

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@jerrydrennan Thank you for your reply! The information you shared is very helpful as we begin our journey to transplant. This is such a great platform for those of us to learn about the transplant process from those of you who have gone through it. We appreciate your willingness to tell your story. I know I will have many more questions. Wishing you continued good health & much prosperity come the New Year!

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@jodeej

@stella25 when we were looking into my husband having a living donor, his doctor said they wouldn't transplant before his MELD was a 28. That was at Mayo, Rochester. I don't know what it is for other programs.
Blessings,
JoDee

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Thank you JoDee. Has your husband been transplanted or still waiting?

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@stella25

Thank you JoDee. Has your husband been transplanted or still waiting?

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@stella25 he was blessed with a deceased donor liver July 7 of this year with a MELD of 30 after being listed for 11 months. His wait was shorter due to him having liver cancer.
Blessings on your journey!
JoDee

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@gramjr1

HI everyone! Thank you for your valuable sharing! My sister-in-law was flown to Florida for emergency care and found that she needs a liver. She is on a liver transplant list and like others was told, it would be a cadaver. She’s #30 on the list. They’re keeping her there at the hospital or the hotel since she needs to be no more than 30 miles away. She lives about 1100 miles away as we do. We’re going to fly down when she gets the word. We can’t afford 2 trips with hotel costs and plane fare, so as much as we would love to be with her now and then, then will be more important we felt. She is 59 years old. She’s very independent, but is welcoming us coming down when the time comes, so we know we need to be there. We would of been there no matter what anyway. Didn’t know anything on transplants and this site has helped us gain some insight. Thank you so much.

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@gramjr1 Hi, and welcome to Connect. How is your sister-in-law doing now? I presume that she is at the facility that Mayo has for transplant candidates who are waiting or have just had transplants. How long do they anticipate for her to get to the top of the list, being at #30 now?
I hope she moves up the list quickly or that somehow something happens so she won't have to wait too long.
JK

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@jerrydrennan

@stella25
When I was told that o needed a liver transplant for cancer. I could get a living donor and shorten the process. I would have to undergo unos protocol. Chemoradiation and brachey treatment be a accepted by unos as a candidate. My niece was the closest match after 5 days of testing at the Mayo in Rochester. They determined the liver size was not adequate for me. But if it was good we could of schedule surgery for transplant. I was at a 25 meld score. I was transplanted at 33 meld deceased donors.
Hope this helps.
God Bless

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Jerrydrennan, I am happy to hear that you recieved your liver transplant. Your niece is an amazing person to have offered, and undergone the evaluation to be your donor. I have extreme respect and admiration for her.
Jerry, how are you doing since transplant surgery? Do you have to undergo any extra treatment because of the cancer? I don't know how that all works.

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