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.

@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

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@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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@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

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@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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@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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@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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@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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@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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@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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@gaylea1

@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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Thanks for the encouragement, I no that this shall to pass. It makes me a little irritable With my spouse. what does manic mean, am I going crazy .

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@livertrex

Thanks for the encouragement, I no that this shall to pass. It makes me a little irritable With my spouse. what does manic mean, am I going crazy .

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@livertrex believe me you are not going crazy. Many of us go through this process. Still your mind and whatever you feel is negative remember that there are so many positives. Look forward.. look towards all that you want to do in life. Hang on to that...reassure yourself that life is so worth living.

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@livertrex

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

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@livertrex, Congratulations on your transplant one month ago! I am glad to hear that you are going home.

I remember that when I went home after my transplant, my husband and I felt suddenly alone without our nurses and doctors nearby. I want to share a couple of links with you. I invite you to enter the conversation as you are comfortable. And ask any questions as you think of them.

- Post-Transplant Mental Health & Well-being: Q&A with Shelia Jowsey-Gregoire, M.D.
You can read an interview with Here Shelia Jowsey-Gregoire, M.D., psychiatrist in the transplant center at Mayo Clinic’s campus in Rochester, Minnesota. Here is what she says, "One thing we watch for is any changes to sleep or mood as a result of new immunosuppressive therapy. If there are any negative side effects, we work to address those right away."
https://connect.mayoclinic.org/page/transplant/newsfeed-post/post-transplant-mental-health-well-being-qa-with-shelia-jowsey-gregoire-m-d/
- Changes after Transplant - This is a group discussion where members have shared their own experiences with their new lives after transplant.
https://connect.mayoclinic.org/discussion/changes-after-transplant/
Are you able to take naps during the daytime hours?
Have you spoken to your transplant coordinator or team about the sleep issues since they have taken you off prednisone? What have they suggested?

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