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.

@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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@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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@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

@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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@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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@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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@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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@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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@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

REPLY
@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.

Jump to this post

@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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