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.

JK | @contentandwell | Mar 14, 2020
In reply to @khh "I am A+ and I think that’s pretty common. I wouldn’t think that would be a..." + (show)
@khh

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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@khh that is probably a plus, as my B type was. + and - don’t matter. O type can go to anyone but O can only get type O so that blood type is at a disadvantage from what I’ve heard. You can get a type A liver or a type O liver.
JK

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benlam11 | @benlam11 | Mar 15, 2020
In reply to @contentandwell "@tjgisewhite What else do they base who gets the next available liver besides MELD? Of course..." + (show)
@contentandwell

@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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My Meld score was in the high 20,s , however I needed a Liver and Kidney transplant. I was transferred with extreme HE (Like in a Coma) from Las Vegas and after being revived at the MAYO and an additional heart test, I received my transplant within 24 hrs. This was after a 2 year journey of misdiagnosis in Las Vegas. Never give up and stay positive - they journey will be worth it.

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1 reply
beckyy39 | @beckyy39 | Mar 15, 2020
In reply to @contentandwell "@tjgisewhite What else do they base who gets the next available liver besides MELD? Of course..." + (show)
@contentandwell

@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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This week at Mayo in FL I was told because my blood type is A+ and that isn't as common, generally, you don't get your liver transplant until you have a MELD score of 25 because there are fewer organs available.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 15, 2020

Here is an Infographic: MELD scores for liver transplants
https://newsnetwork.mayoclinic.org/discussion/infographic-meld-scores-for-liver-transplants/

@khh, @beckyy39, @benlam11, @contentandwell, @tjgisewhite, @racing212, @seahorstmayo, @joanaiken, @jeanne5009,
As many of you have been sharing about MELD score in this conversation, I want to share this with you.

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 15, 2020
In reply to @khh "Is there anything overall that is recommended for people with our issues to do differently than..." + (show)
@khh

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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@khh, Healthy life style - stay active, eat healthy foods, abstain from alcohol, avoid over-the-counter medicines and supplements, stay updated on routine medical prevention, stay up to date on vaccines, are a few that come to mind. Most important is to follow doctors advice develop an open communication with a doctor whom you trust.

You are asking some terrific questions! And you are so right that there are a lot of 'us' out here! We stick together, and we are here for you and for each other.

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1 reply
JK | @contentandwell | Mar 15, 2020
In reply to @benlam11 "My Meld score was in the high 20,s , however I needed a Liver and Kidney..." + (show)
@benlam11

My Meld score was in the high 20,s , however I needed a Liver and Kidney transplant. I was transferred with extreme HE (Like in a Coma) from Las Vegas and after being revived at the MAYO and an additional heart test, I received my transplant within 24 hrs. This was after a 2 year journey of misdiagnosis in Las Vegas. Never give up and stay positive - they journey will be worth it.

Jump to this post

@benlam11 Thank goodness you were transferred to a good transplant center. Being misdiagnosed is so difficult. My symptoms should have led to a diagnosis of cirrhosis so easily but they did not. Thank God the neurologist added it all up.

@beckyy39 MELD 25 really is not that high overall. You can of course get a type O liver also. I was told that was an advantage.

@rosemarya Ahh, distance from donor (she was in Cambridge, right next door to Boston where I was) and my time on the list both probably helped me.
JK

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2 replies
benlam11 | @benlam11 | Mar 15, 2020
In reply to @contentandwell "@benlam11 Thank goodness you were transferred to a good transplant center. Being misdiagnosed is so difficult...." + (show)
@contentandwell

@benlam11 Thank goodness you were transferred to a good transplant center. Being misdiagnosed is so difficult. My symptoms should have led to a diagnosis of cirrhosis so easily but they did not. Thank God the neurologist added it all up.

@beckyy39 MELD 25 really is not that high overall. You can of course get a type O liver also. I was told that was an advantage.

@rosemarya Ahh, distance from donor (she was in Cambridge, right next door to Boston where I was) and my time on the list both probably helped me.
JK

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After the misdiagnosis, I contacted the MAYO myself - as I lost trust locally. They are just the most caring and, knowledge people I've ever met. With all my records sent there - I was diagnosed in One Day. It did take 9 months to complete all the testing. I've been in a HE coma twice (initially the TV was talking to me, then I entered a FOG that I could not see trough, with things talking to me. Now my Ammonia Levels are Great. Before I was taking Xifaxan and Lactulose, Las Vegas Doctors were pushing me to go on dialysis (I kept procrastinating) and eventually after speaking with an amazing Dr. at the Mayo, he said to skip it - for the worst that would happen is that they would tap my neck. Get on the waiting list quickly and also look at the time to transplant at each center. There are some huge swings. Best Wishes. My Meld score at some point was in the upper 20's, and when they called, I was 5 minutes away.

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2 replies
joanaiken | @joanaiken | Mar 15, 2020
In reply to @benlam11 "After the misdiagnosis, I contacted the MAYO myself - as I lost trust locally. They are..." + (show)
@benlam11

After the misdiagnosis, I contacted the MAYO myself - as I lost trust locally. They are just the most caring and, knowledge people I've ever met. With all my records sent there - I was diagnosed in One Day. It did take 9 months to complete all the testing. I've been in a HE coma twice (initially the TV was talking to me, then I entered a FOG that I could not see trough, with things talking to me. Now my Ammonia Levels are Great. Before I was taking Xifaxan and Lactulose, Las Vegas Doctors were pushing me to go on dialysis (I kept procrastinating) and eventually after speaking with an amazing Dr. at the Mayo, he said to skip it - for the worst that would happen is that they would tap my neck. Get on the waiting list quickly and also look at the time to transplant at each center. There are some huge swings. Best Wishes. My Meld score at some point was in the upper 20's, and when they called, I was 5 minutes away.

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I trust Mayo. They have been in charge of my care since 2008 and I am still here after 2 liver transplants and awaiting a kidney. Best wishes !

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