Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

@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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@rosemarya

@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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Thanks, I live in a small community. I get a lot of support from my chuch. But it is nice to talk to people that are going through the same issues. I am resting and if the Broncos don't start playing some football. I am going to nod off. Thanks for your support.

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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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Please, Always check any medications or supplements with your transplant team. Many things can interact in a harmful way with our antirejection medications and our transplanted organ.

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@livertrex

Thanks, I live in a small community. I get a lot of support from my chuch. But it is nice to talk to people that are going through the same issues. I am resting and if the Broncos don't start playing some football. I am going to nod off. Thanks for your support.

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@livertrex, I am not a Broncos fan, in fact not a sports fan at all. So I guess it's OK for me to say that, I hope that the game delays or is boring and you fall asleep!
I know exactly what you mean. I had a lot of support from family and friends, and especially my church community. But I did not have, or even know anyone with a transplant. So that is when I began to look online for others. I really wish that I had something like Mayo Connect before and after my transplant in 2009. I was thrilled when I found Connect. I still am thrilled to be able to meet people from all across the country, and other parts of the world to0. I like to try to help others, but I especially like to celebrate the New Life of Organ Donation.

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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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@ livertex
Yep…here I am sleepless in FL. Tired all day but no sleep. I'm finding that the rxs for sleep I cant take. There is an antihistimine that we may try. I am Stage 4 cirrhosis with a Meld of 8. Decompensated but very slow progression
Mayo says I am a very good candidate just too early. UGH! My road is long but Im strong…I will make it. You will too!!

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@jeanne5009

@ livertex
Yep…here I am sleepless in FL. Tired all day but no sleep. I'm finding that the rxs for sleep I cant take. There is an antihistimine that we may try. I am Stage 4 cirrhosis with a Meld of 8. Decompensated but very slow progression
Mayo says I am a very good candidate just too early. UGH! My road is long but Im strong…I will make it. You will too!!

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Long yes. But worth it. You learn a lot about your self and make friends. If they ask you relocate do it. It was in and received a liver in 5 day. God answers prayer.

IMG_20190913_085036

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@jeanne5009

@ livertex
Yep…here I am sleepless in FL. Tired all day but no sleep. I'm finding that the rxs for sleep I cant take. There is an antihistimine that we may try. I am Stage 4 cirrhosis with a Meld of 8. Decompensated but very slow progression
Mayo says I am a very good candidate just too early. UGH! My road is long but Im strong…I will make it. You will too!!

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@livertrex hang in there! My MELD was over 30 before they transplanted me (2 1/2 year wait list) and some people here have reached as high as 40. I know that sleep seems impossible but thank goodness you don't have the severe itching, nausea and EI episodes. Resting your body for now is good. When it can't take anymore you will sleep. Don't fight it just get yourself into a mind set that sleep will come when your body is ready. I found the more I fretted about not sleeping the worse it became. Then I let it go and eventually I did sleep.

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@jeanne5009

@ livertex
Yep…here I am sleepless in FL. Tired all day but no sleep. I'm finding that the rxs for sleep I cant take. There is an antihistimine that we may try. I am Stage 4 cirrhosis with a Meld of 8. Decompensated but very slow progression
Mayo says I am a very good candidate just too early. UGH! My road is long but Im strong…I will make it. You will too!!

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@jeanne5009 You are in that difficult time of wanting to be able to get a transplant but to get one you need to get much sicker. I managed to make it to MELD 28 without feeling too bad most of the time. Just the last 6 weeks or so were difficult and even then every day was not bad. I hope your MELD goes up too without you feeling too bad. You have a pretty low MELD, I didn’t think you could even be on the list with such a low one.
JK

Liked by jeanne5009

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@jeanne5009

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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Hi @jeanne5009. I did not sleep well prior to transplant. And I remember being unable to get comfortable due to ascites and later edema. I had to prop up with pillows because I was too uncomfortable lying down. I only spent a short period of time in the bed at night, and spent most of my time on the couch. I was also bothered with fatigue.
I didn't take anything for it to protect my liver.
After I experienced acute kidney failure and was flown to Mayo, I was on dialysis. The dialysis along with paracenthesis proedures eased some of the ascites and edema, so I was able to experience some relief to lie in bed (still propped up) for a longer time night and day. I do remember that I could get out of bed and I paced the floor of our bedroom at GOL to pass the time and to relieve the abdominal discomfort.
I am sorry to add that this is probably not the information that you hoped for. I know how time can seem to move in slow motion while waiting. I send my hopes and prayers for some relief.

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