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.

@rosemarya

@parrot53, It has been a couple weeks since I have heard from you. I want to drop in and to ask - How are you getting along? Have you found the answers that you were looking for? Will you be eligible for transplant?

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Hello Rosemary,
I am not qualified for a transplant at present. They are currently monitoring a tumor and watching my MELD score and tumor size. I did get answers. Thank you,
Susan

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@rosemarya

@parrot53 - Hi Susan and Welcome to Mayo Clinic Connect. I am a liver and kidney recipient. As a patient I am qualified to share my experiences and to walk with you on your journey, however the information that you seek is best left to the Professionals.
Here is the link to the Mayo Clinic Liver Transplant Program
https://www.mayoclinic.org/departments-centers/liver-transplant/home/orc-20211818
and here is the contact information for the Florida Liver transplant Center:
Florida
4500 San Pablo Road
Jacksonville, FL 32224
Phone: 904-956-3309

Please call them and ask these specific questions directly to the liver department in Florida.
Has your current medical team suggested transplant?

Jump to this post

@parrot53, It has been a couple weeks since I have heard from you. I want to drop in and to ask - How are you getting along? Have you found the answers that you were looking for? Will you be eligible for transplant?

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@loribmt

Congratulations on your 5th transplant anniversary! That’s a very positive and encouraging mile stone. ☺️

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Thank you, Lori. It is a milestone.

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@contentandwell

@parrot53 as @rosemarya said, you need to ask those questions to the transplant facility that you are interested in. I do know that back when I had my transplant, 5 years ago today, there was not a specific age at my hospital, Mass General, they looked at the overall health of the individual and how they would do with such a major surgery. Of course they have you do virtually every test in the book too.
JK

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Congratulations on your 5th transplant anniversary! That’s a very positive and encouraging mile stone. ☺️

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@parrot53

Hello,
My name is Susan and I have been diagnosed with cirrhosis and HCC. My current question is what is the age limit for a liver transplant at Mayo Clinic in Florida? Current requirements to qualify for a transplant, how distance from the facility affects patients order for transplant, and current exception points/requirements for patients with HCC.

Jump to this post

@parrot53 as @rosemarya said, you need to ask those questions to the transplant facility that you are interested in. I do know that back when I had my transplant, 5 years ago today, there was not a specific age at my hospital, Mass General, they looked at the overall health of the individual and how they would do with such a major surgery. Of course they have you do virtually every test in the book too.
JK

REPLY
@parrot53

Hello,
My name is Susan and I have been diagnosed with cirrhosis and HCC. My current question is what is the age limit for a liver transplant at Mayo Clinic in Florida? Current requirements to qualify for a transplant, how distance from the facility affects patients order for transplant, and current exception points/requirements for patients with HCC.

Jump to this post

@parrot53 - Hi Susan and Welcome to Mayo Clinic Connect. I am a liver and kidney recipient. As a patient I am qualified to share my experiences and to walk with you on your journey, however the information that you seek is best left to the Professionals.
Here is the link to the Mayo Clinic Liver Transplant Program
https://www.mayoclinic.org/departments-centers/liver-transplant/home/orc-20211818
and here is the contact information for the Florida Liver transplant Center:
Florida
4500 San Pablo Road
Jacksonville, FL 32224
Phone: 904-956-3309

Please call them and ask these specific questions directly to the liver department in Florida.
Has your current medical team suggested transplant?

REPLY

Hello,
My name is Susan and I have been diagnosed with cirrhosis and HCC. My current question is what is the age limit for a liver transplant at Mayo Clinic in Florida? Current requirements to qualify for a transplant, how distance from the facility affects patients order for transplant, and current exception points/requirements for patients with HCC.

REPLY
@contentandwell

@alliepete I'm happy to hear that your husband's nausea is getting better with zofran. I never had that problem but I have heard a lot of people do lose their appetites. I do know that I was not on Cellcept for too long. Discontinuing that was the first drug change they made I think. Now I am just on sirolimus - tacrolimus was causing potential kidney problems. I will be five years post next week.
JK

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My husband's main drug is Everolimus for antirejection. Have ongoing ascites issue but seems to be slowing. We're still in the 6 month post surgery acute period so patience must be practiced. Quite a journey!

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@alliepete

It seems to be a Cellcept issue maybe, but he used one compazine suppository last Thursday and it was miraculous...he also started a zofran regimen three times a day before meals, and he's doing great. Has gained 4 pounds. Fingers crossed! They're going to change out the cellcept to something with less stomach side effects. Thank you.

Jump to this post

@alliepete I'm happy to hear that your husband's nausea is getting better with zofran. I never had that problem but I have heard a lot of people do lose their appetites. I do know that I was not on Cellcept for too long. Discontinuing that was the first drug change they made I think. Now I am just on sirolimus - tacrolimus was causing potential kidney problems. I will be five years post next week.
JK

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@colleenyoung

Hi @alliepete, allow me to welcome you. Sorry for the delay. You'll want to also meet @rosemarya @contentandwell @gaylea1 and others here.

Has your husband's nausea improved with increasingly his magnesium levels?

Jump to this post

It seems to be a Cellcept issue maybe, but he used one compazine suppository last Thursday and it was miraculous...he also started a zofran regimen three times a day before meals, and he's doing great. Has gained 4 pounds. Fingers crossed! They're going to change out the cellcept to something with less stomach side effects. Thank you.

REPLY
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