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.

carecare | @carecare | May 5 2:55pm
In reply to @melmc18 "I am just starting the evaluation process. So I’m not on the list yet. I have..." + (show)
@melmc18

I am just starting the evaluation process. So I’m not on the list yet. I have a MELD score of 15 and just diagnosed w HPS. No O2 needed yet

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Ok, so your liver must be in worse shape than mine. Im on oxygen 24/7.
I hope your evaluation goes smoothly.

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melmc18 | @melmc18 | May 5 2:20pm
In reply to @carecare "Hi, yes, I have HPS. Are you on transplant list. How is your oxygen? I’ve been..." + (show)
@carecare

Hi, yes, I have HPS. Are you on transplant list. How is your oxygen? I’ve been on oxygen for 8 months.

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I am just starting the evaluation process. So I’m not on the list yet. I have a MELD score of 15 and just diagnosed w HPS. No O2 needed yet

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1 reply
carecare | @carecare | May 5 12:13pm
In reply to @melmc18 "I it’s probably Hepapulminary Syndrome. it can influence getting put on the list and how high...." + (show)
@melmc18

I it’s probably Hepapulminary Syndrome. it can influence getting put on the list and how high. I also have HPS.

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Hi, yes, I have HPS. Are you on transplant list. How is your oxygen? I’ve been on oxygen for 8 months.

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1 reply
carecare | @carecare | May 5 12:11pm
In reply to @kmlowe "Hope the blood gas procedures has the outcomes you need - it does seem that you’ve..." + (show)
@kmlowe

Hope the blood gas procedures has the outcomes you need - it does seem that you’ve a lot going on. I’m surprised that you’ve actually been put on the list at 9 - I thought MELD had to be at least 15 to be listed, unless there’s a qualified exception (I don’t know what conditions this includes). Which location is your transplant hospital? I’m assuming it’s one of the Mayos 😁.

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I have Hepatopulmonary Syndrome. My oxygen levels have been awful, but I guess not awful enough. I hope they don’t wait to help me until I’m deathly ill.
I’m patient at Tampa General Hospital.

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1 reply
melmc18 | @melmc18 | May 5 11:41am
In reply to @kmlowe "Hope the blood gas procedures has the outcomes you need - it does seem that you’ve..." + (show)
@kmlowe

Hope the blood gas procedures has the outcomes you need - it does seem that you’ve a lot going on. I’m surprised that you’ve actually been put on the list at 9 - I thought MELD had to be at least 15 to be listed, unless there’s a qualified exception (I don’t know what conditions this includes). Which location is your transplant hospital? I’m assuming it’s one of the Mayos 😁.

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I it’s probably Hepapulminary Syndrome. it can influence getting put on the list and how high. I also have HPS.

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1 reply
Curses | @kmlowe | May 4 6:04pm

Hope the blood gas procedures has the outcomes you need - it does seem that you’ve a lot going on. I’m surprised that you’ve actually been put on the list at 9 - I thought MELD had to be at least 15 to be listed, unless there’s a qualified exception (I don’t know what conditions this includes). Which location is your transplant hospital? I’m assuming it’s one of the Mayos 😁.

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2 replies
carecare | @carecare | May 4 5:00pm

Hello… I was just placed on the liver transplant list, but MELD score is only 9. I have to have an arterial blood gas done on May 9th to see how low my oxygen level is. If low enough, my meld score will go higher. I’ve been on oxygen for 8 months now. I’ve been through a lot.

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melmc18 | @melmc18 | May 1 11:11am
In reply to @kmlowe "Welcome, @melmc18! Feel free to reach out with any questions. I’m currently awaiting approval from insurance..." + (show)
@kmlowe

Welcome, @melmc18! Feel free to reach out with any questions. I’m currently awaiting approval from insurance to go through the transplant evaluation process, so am kind of a newbie, but I’m here to support as I can.

Kelly

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That’s Great Kelly,
we will be able to go through it together. I hope everything works out w your insurance. Mayo fights hard for you if insurance becomes an issue. Keep me posted on how things are going, I will be praying for you that you get all that you need
Melissa

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Curses | @kmlowe | Apr 30 4:44pm
In reply to @melmc18 "I have been on a life long journey with my liver. Confirmed I had HepC at..." + (show)
@melmc18

I have been on a life long journey with my liver. Confirmed I had HepC at age 17 due to blood transfusions at birth. Went through 3 different experimental treatments, finally cured in 2013. Now because of all of the damage taken onto my liver I begin my journey of a transplant. I am very optimistic and hope my evaluation goes well. I am glad to have a place now to connect with others like me and who have already had the transplant. It will be helpful to learn from others. Blessings to All

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Welcome, @melmc18! Feel free to reach out with any questions. I’m currently awaiting approval from insurance to go through the transplant evaluation process, so am kind of a newbie, but I’m here to support as I can.

Kelly

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1 reply
melmc18 | @melmc18 | Apr 30 12:41pm

I have been on a life long journey with my liver. Confirmed I had HepC at age 17 due to blood transfusions at birth. Went through 3 different experimental treatments, finally cured in 2013. Now because of all of the damage taken onto my liver I begin my journey of a transplant. I am very optimistic and hope my evaluation goes well. I am glad to have a place now to connect with others like me and who have already had the transplant. It will be helpful to learn from others. Blessings to All

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