Liver transplant - Let's support each other

@rosmarya
While a lot of you transplant folks tell of pre transplant horrors, I seem to be just passing the time waiting for one of those horrors to happen..lol. Im anticipating some big drama that will start the ball rolling...or.....maybe I will just deal with silly symptoms for the rest of my days....
My summer flew by with OT for my broken hand, PT for my bone spur aggravating my Achilles and of course there is the ever present impinged rotator cuff plus lots of Dr visits. The combined pain was exhausting and didnt make for a happy lady!
Now, the hand is getting better, the foot is under control...no more boot ...and the shoulder is still driving me crazy. Insomnia is something no one in my house understands or wants to. I have restless leg with it and flop around like a fish on a dock in bed. I think a lot of this started with the pain. I managed with 1 Tramadol sometimes 2 for most days. My GP has now prescribed Temazepam but we arent able to get it thru insurance. They keep pushing Melatonin which makes me weird with nightmares....a very scary combo. So...since I research everything, I came upon a report that said there was succuss with Hydoxyzine which is an antihistamine that I was given for my itchies from excema. I am anxious to run this by my hepatologist to see what she thinks. Self management is so important but doctors input is too! Communications between the patient and all the Drs is the key.
This is long but it is a little difficult to type on my phone...perhaps I should try to SLEEP! A novel idea!
Be well...you continue to be my heros!

Yes

@livertrex, What a fantastic picture! Was that taken before you headed home?

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.

@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.