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.

@seahorstmayo

Unfortunately, the MELD is what they look at. I believe that it is the only objective way they have. I was in the same boat. I only got a transplant after developing a tumor in my liver. Wish I could have better news.

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Thank you for the response. It seems everyone is saying the same thing.

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@tjgisewhite

Hi Karen. My name is Tammy. On December 16th, 2019, I had a liver transplant at the Mayo facility here in Jacksonville, FL. In FL, your MELD score has a lot to do with you being qualified or not for a liver transplant. My MELD score was 23. Of course, that is not the only thing they base it on, but it is certainly factored in there. I wish you the best of luck.

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Thank you for your input. I hope you are doing well.

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@racing212

I go to the mayo in Rochester mn tomorrow for more testing monday and Tuesday

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Wish you the best! I had no idea how many people were going through this.

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@rosemarya

I just came up on this Q & A - so grab a quick lunch, because it is today-

Tue, Mar 10, 2020
2:30pm to 3:00pm CT
Video Q&A - Do you have questions about COVID-19?
https://connect.mayoclinic.org/webinar/video-qa-do-you-have-questions-about-covid-19/

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Is there anything overall that is recommended for people with our issues to do differently than following the rec for immunocompromised individuals?

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@racing212

I go to the mayo in Rochester mn tomorrow for more testing monday and Tuesday

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@racing212, I'll be thinking about you. Hope all goes well.

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@tjgisewhite

Hi Karen. My name is Tammy. On December 16th, 2019, I had a liver transplant at the Mayo facility here in Jacksonville, FL. In FL, your MELD score has a lot to do with you being qualified or not for a liver transplant. My MELD score was 23. Of course, that is not the only thing they base it on, but it is certainly factored in there. I wish you the best of luck.

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@tjgisewhite What else do they base who gets the next available liver besides MELD? Of course I know blood type and size, but are there other things? If so I was not aware of them but I found it surprising that I got my transplant at MELD 28 when they were generally transplanting at MELDS in the 30s in my region.

@racing212 Good luck with the testing. Please let us know how it goes.
JK

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@contentandwell They also base it on how many people are on your list according to your blood type.

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@tjgisewhite

@contentandwell They also base it on how many people are on your list according to your blood type.

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@tjgisewhite As I said, I do know of course that blood type is part of the screening of whom gets an available liver, but I thought from your post that there might be other criteria that transplant centers can be a bit subjective with. My MELD would probably have gone into the 30s within a few weeks of getting a liver, I had taken a serious turn for the worse. I always wonder if even though my MELD did not reflect that, they could make that decision. When my liver was dissected it was approaching being totally non-functional. Something that was said made me wonder if they did have some leeway there.
JK

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There might be some other things they consider, but I’m not really hearing of anything definite. I have read about increased “pulmonary artery pressures” making a difference if you reach certain numbers. All I know is I have “pulmonary hypertension”. I don’t know any numbers. Also, apparently my liver is terrible like yours. They say my “liver density” is way off the charts even for people with severe cirrhosis and I know I bleed everywhere all the time. I’m sure everyone else does too.
I am happy to hear you did receive a liver and I pray you are doing great!

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@tjgisewhite

@contentandwell They also base it on how many people are on your list according to your blood type.

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I am A+ and I think that’s pretty common. I wouldn’t think that would be a huge deterrent in my case. What is your experience with this?
Karen

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