1. < Transplants

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.

stella25 | @stella25 | Dec 26, 2018
In reply to @jodeej "@stella25 when we were looking into my husband having a living donor, his doctor said they..." + (show)
@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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1 reply
jodeej | @jodeej | Dec 27, 2018
In reply to @stella25 "Thank you JoDee. Has your husband been transplanted or still waiting?" + (show)
@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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JK | @contentandwell | Dec 27, 2018
In reply to @gramjr1 "HI everyone! Thank you for your valuable sharing! My sister-in-law was flown to Florida for emergency..." + (show)
@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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 28, 2018
In reply to @jerrydrennan "@stella25 When I was told that o needed a liver transplant for cancer. I could get..." + (show)
@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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1 reply
JK | @contentandwell | Dec 28, 2018
In reply to @jerrydrennan "@stella25 When I was told that o needed a liver transplant for cancer. I could get..." + (show)
@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 just checked back and saw that you received your transplant in September, very close to my own "transplantiversary", September 23. Are you back in full swing at this point? I didn't realize that they do transplants for liver cancer. As Rosemary commented, I am in the dark about it, is there any follow-up with any other cancer treatments?
It's so great to finally be on the other side of your liver problems. How did liver cancer effect you prior to transplant? Are there similarities to the problems of cirrhosis since the liver is probably not functioning well when it is cancerous?
JK

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jerrydrennan | @jerrydrennan | Dec 28, 2018
In reply to @rosemarya "Jerrydrennan, I am happy to hear that you recieved your liver transplant. Your niece is an..." + (show)
@rosemarya

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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@rosemarya @contentandwell

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1 reply
jerrydrennan | @jerrydrennan | Dec 28, 2018
In reply to @jerrydrennan "@rosemarya @contentandwell" + (show)
@jerrydrennan

@rosemarya @contentandwell

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@contentandwell
@rosemarya
I had my transplant Sept. 19 officially. The transplant went great. I was walking day 0
Released on day5.
On Sept 30 my niece who tried to be the donor have my brother a break from caretaker for me. That night I passed out will staying at GOL house. Casey called 911,, went to st Mary's hospital have a hemorrhagic bleed in the body. Hyplexia anemia. And alot of other hyplexia stuff. Under went massive transfusions.
30 pts of blood , platelet, and fluids. Was not good had several teams work g on a way to stop the bleed. I am very fortunate to have had Casey with me , she helped with 911 and was able to give them a detail info to the paramedics and Drs at the ER. Until my brother showed up. 5 days in ICU then 10 days recovery. Went backwards. I am doing good now. I have been reading the connect but I guess I haven't responded to it. Sorry
I was diagnosed with prehillar Chalangiocarsanoma.
That's why the transplant. I am blessed.
Jerry Drennan

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2 replies
JK | @contentandwell | Dec 28, 2018
In reply to @jerrydrennan "@contentandwell @rosemarya I had my transplant Sept. 19 officially. The transplant went great. I was walking..." + (show)
@jerrydrennan

@contentandwell
@rosemarya
I had my transplant Sept. 19 officially. The transplant went great. I was walking day 0
Released on day5.
On Sept 30 my niece who tried to be the donor have my brother a break from caretaker for me. That night I passed out will staying at GOL house. Casey called 911,, went to st Mary's hospital have a hemorrhagic bleed in the body. Hyplexia anemia. And alot of other hyplexia stuff. Under went massive transfusions.
30 pts of blood , platelet, and fluids. Was not good had several teams work g on a way to stop the bleed. I am very fortunate to have had Casey with me , she helped with 911 and was able to give them a detail info to the paramedics and Drs at the ER. Until my brother showed up. 5 days in ICU then 10 days recovery. Went backwards. I am doing good now. I have been reading the connect but I guess I haven't responded to it. Sorry
I was diagnosed with prehillar Chalangiocarsanoma.
That's why the transplant. I am blessed.
Jerry Drennan

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@jerrydrennan Oh my goodness, Jerry, you sure had a tough time there. That sure is a lot of transfusions. Thank goodness you had someone there with you. I am so happy for you that you are doing well now, and yes, you are blessed.

I just googled Perihilar cholangiocarcinoma and you are indeed very fortunate to have been diagnosed when you were and to have had a transplant. Those of us who have been through transplants realize how lucky we are to be alive in a time when this is possible. I thank God every day that I am still here.
JK

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 30, 2018
In reply to @jerrydrennan "@contentandwell @rosemarya I had my transplant Sept. 19 officially. The transplant went great. I was walking..." + (show)
@jerrydrennan

@contentandwell
@rosemarya
I had my transplant Sept. 19 officially. The transplant went great. I was walking day 0
Released on day5.
On Sept 30 my niece who tried to be the donor have my brother a break from caretaker for me. That night I passed out will staying at GOL house. Casey called 911,, went to st Mary's hospital have a hemorrhagic bleed in the body. Hyplexia anemia. And alot of other hyplexia stuff. Under went massive transfusions.
30 pts of blood , platelet, and fluids. Was not good had several teams work g on a way to stop the bleed. I am very fortunate to have had Casey with me , she helped with 911 and was able to give them a detail info to the paramedics and Drs at the ER. Until my brother showed up. 5 days in ICU then 10 days recovery. Went backwards. I am doing good now. I have been reading the connect but I guess I haven't responded to it. Sorry
I was diagnosed with prehillar Chalangiocarsanoma.
That's why the transplant. I am blessed.
Jerry Drennan

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Jerry, You have really been on a wild journey. I had no idea that all this was happening to you. I am relieved to hear that you are doing good now. I send my thoughts and prayers that your recovery continues on a positive path.

What a blessing to have such a niece! Carrie is a hero and a role model for all of us.
It is remarkable that you were still at the GOL and so near to Mayo St Mary's ER. It sounds as if that is another part of your miracle outcome.

Jerry, with all of that behind you, I fully expect you to have strong expectation for a Happy and Healthy New Year. Take it one day at a time, and keep on getting stronger. I am happy that you are following the conversations here on Connect, and as you get stronger, I look forward to hearing from you about your new life. I have a lot of questions that I would like to ask you, so don't stay away too long!

Are you at home now?

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 30, 2018
In reply to @mnemeth318 "@mathewsw In answer to your question I did some research and found that according to UNOS..." + (show)
@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, I want to drop in for a short visit and say that I hope that you are experiencing a satisfactory recovery. I hope that you will have the energy to welcome the New Year!
Have you been released from the hospital?

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