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.

Mentor
Dana, Volunteer Mentor | @danab | Mar 16, 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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@tjgisewhite Hi, My transplant was a Heart but I'm an A+ and i got my heart quick so i think maybe that was an advantage in my case.

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1 reply
brianna | @brianna | Mar 16, 2020

Hello. My name is Brianna. I am 25 years old and awaiting a liver transplant. I was wondering how long it takes to be able to walk again after the surgery and also how long it takes for the ascites to go away so I stop looking pregnant and feeling the pressure on my lungs.

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1 reply
khh | @khh | Mar 16, 2020

There inlies part of my problem. I have not been assigned to a doc here and I’ve been doing all the right rtbings for 3 yrs based on my GI (only) doc, my family doc and what I may know along with an NP. So I don’t have a liver doc.

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Tammy | @tjgisewhite | Mar 16, 2020

I had all my vaccines...including the live ones...done before my transplant and I did not encounter any issues. However, keep in mind that everyone must follow their Dr.'s orders.

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khh | @khh | Mar 16, 2020
In reply to @rosemarya "@khh, Healthy life style - stay active, eat healthy foods, abstain from alcohol, avoid over-the-counter medicines..." + (show)
@rosemarya

@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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Thank you for the reply. I have been following every letter of the law, I just don’t have an assigned physician. I do have a question that I have received a consistent response to. Regarding the shingles vaccine ( esp. since it is live I think) , what has been the recommendation? Also know Thai have had shingles several times already. Should I get the vaccine? If I’m no 60, do I get the pneumovax vaccine?

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khh | @khh | Mar 16, 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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May I ask what you were initially diagnosed with?
Karen

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khh | @khh | Mar 15, 2020
In reply to @joanaiken "I trust Mayo. They have been in charge of my care since 2008 and I am..." + (show)
@joanaiken

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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I am so glad to hear you have had such great care! That says a lot for Mayo! Believe me, it’s not that way everywhere. I will continue to pray for your care and success!

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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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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

Jump to this post

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.

REPLY
2 replies
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

REPLY
2 replies
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