Liver transplant - Let's support each other

@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

@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.

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.

@ 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!!

@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.

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.

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.

@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?

@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.

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 .