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.

gaylea1 | @gaylea1 | Sep 21, 2019
In reply to @livertrex "I tried just about everything. I received mixed response. I know melition doesn't work. I even..." + (show)
@livertrex

I tried just about everything. I received mixed response. I know melition doesn't work. I even was so desperate that I took ambiance.

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@livertrex I had serious sleep problems pre-transplant. Nothing worked...I tried organic and medical methods. I learned that sleep would come to me when needed. I couldn't force it no matter what I took or tried. I realized that sleep would come when my body was ready. So...I watched Netflix and read a ton of books. I found on line (You tube) lots of calming and sleep inducing music. I slept during the day if I could and if not just rested a lot. I still listen to calming music to help me sleep. It's a rough ride but hang in there...it really does get better..

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2 replies
livertrex | @livertrex | Sep 21, 2019
In reply to @contentandwell "@livertrex Are you taking any prescription pain relievers such as oxycodone, OxyContin, hydrocodone, dilaudid, or tramadol?..." + (show)
@contentandwell

@livertrex Are you taking any prescription pain relievers such as oxycodone, OxyContin, hydrocodone, dilaudid, or tramadol? When I take any of those I lie awake staring at the ceiling for hours. I generally fall asleep at around 5 or 6 in the morning so then I have to sleep all morning. I have to be totally desperate to take anything these days.
JK

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I tried just about everything. I received mixed response. I know melition doesn't work. I even was so desperate that I took ambiance.

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2 replies
livertrex | @livertrex | Sep 21, 2019
In reply to @rosemarya "@livertrex, I wish I could say Good Morning, but it sounds like you had little sleep...." + (show)
@rosemarya

@livertrex, I wish I could say Good Morning, but it sounds like you had little sleep. I know that sleepless nights can be a real bother. My own experience was sleepless miserable nights before transplant. And after my transplant things improved over time.

Livertex, It would be helpful if you share whether you have had a liver transplant yet? Or are you on a waiting list?

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I had my liver transplant Aug 22 and have been realesed to come home.

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1 reply
livertrex | @livertrex | Sep 21, 2019
In reply to @contentandwell "@livertrex Are you taking any prescription pain relievers such as oxycodone, OxyContin, hydrocodone, dilaudid, or tramadol?..." + (show)
@contentandwell

@livertrex Are you taking any prescription pain relievers such as oxycodone, OxyContin, hydrocodone, dilaudid, or tramadol? When I take any of those I lie awake staring at the ceiling for hours. I generally fall asleep at around 5 or 6 in the morning so then I have to sleep all morning. I have to be totally desperate to take anything these days.
JK

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They sent me to the ER they said I was mantic. I can't seem to slow down. Feels like I am on speed. They took me off prednisone and gave me adivan. Feel better now.

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jeanne5009 | @jeanne5009 | Sep 21, 2019
In reply to @rosemarya "@livertrex, I wish I could say Good Morning, but it sounds like you had little sleep...." + (show)
@rosemarya

@livertrex, I wish I could say Good Morning, but it sounds like you had little sleep. I know that sleepless nights can be a real bother. My own experience was sleepless miserable nights before transplant. And after my transplant things improved over time.

Livertex, It would be helpful if you share whether you have had a liver transplant yet? Or are you on a waiting list?

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Rosemarya I am not sleeping at all...miserable impinged rotator cuff not helping. What did you take? Trying to get insurance to cover meds but they are giving us a hard time. What drugs can we take to get an occaisional good nights sleep? Suggestions??

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1 reply
JK | @contentandwell | Sep 21, 2019
In reply to @livertrex "My don't seem to be happy. I feel like I am on speed I can't sleep..." + (show)
@livertrex

My don't seem to be happy. I feel like I am on speed I can't sleep . I spent the night rewiring the house in the middle of the night my mind will not shut down. Must be addressing. I blew out the lights and started out the window all night waiting for morning. mind will not shut.OFf

Jump to this post

@livertrex Are you taking any prescription pain relievers such as oxycodone, OxyContin, hydrocodone, dilaudid, or tramadol? When I take any of those I lie awake staring at the ceiling for hours. I generally fall asleep at around 5 or 6 in the morning so then I have to sleep all morning. I have to be totally desperate to take anything these days.
JK

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 21, 2019
In reply to @livertrex "My don't seem to be happy. I feel like I am on speed I can't sleep..." + (show)
@livertrex

My don't seem to be happy. I feel like I am on speed I can't sleep . I spent the night rewiring the house in the middle of the night my mind will not shut down. Must be addressing. I blew out the lights and started out the window all night waiting for morning. mind will not shut.OFf

Jump to this post

@livertrex, I wish I could say Good Morning, but it sounds like you had little sleep. I know that sleepless nights can be a real bother. My own experience was sleepless miserable nights before transplant. And after my transplant things improved over time.

Livertex, It would be helpful if you share whether you have had a liver transplant yet? Or are you on a waiting list?

REPLY
2 replies
livertrex | @livertrex | Sep 21, 2019
In reply to @rosemarya "My husband and I like to say that if my transplanted organs are happy, then everybody's..." + (show)
@rosemarya

My husband and I like to say that if my transplanted organs are happy, then everybody's happy 😊

Jump to this post

My don't seem to be happy. I feel like I am on speed I can't sleep . I spent the night rewiring the house in the middle of the night my mind will not shut down. Must be addressing. I blew out the lights and started out the window all night waiting for morning. mind will not shut.OFf

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 21, 2019
In reply to @contentandwell "@luckonetj If your transplant center is happy with your numbers that's what matters I think. We..." + (show)
@contentandwell

@luckonetj If your transplant center is happy with your numbers that's what matters I think. We have to trust them to know best. Mine initially said they would consider 1.40 to be my norm but then for some reason they lowered that. Now it is generally less than 1.10. I do have days when I don't manage to get all of that water down, especially if traveling.
JK

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My husband and I like to say that if my transplanted organs are happy, then everybody's happy 😊

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1 reply
JK | @contentandwell | Sep 20, 2019
In reply to @luckonetj "JK, I am doing fine and my creatinine level is 1.37. I expect it to rise..." + (show)
@luckonetj

JK, I am doing fine and my creatinine level is 1.37. I expect it to rise to around 1.45 since my TACROLIMUS has increased to 3 and three. Thank you for asking and I hope you are well. I do drink around 18 glasses of water per day.

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@luckonetj If your transplant center is happy with your numbers that's what matters I think. We have to trust them to know best. Mine initially said they would consider 1.40 to be my norm but then for some reason they lowered that. Now it is generally less than 1.10. I do have days when I don't manage to get all of that water down, especially if traveling.
JK

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