Any advice for my Fiance, 27, Cirrhosis

[Rimah127]

Hello,

My fiance was diagnosed last year with cirrhosis. It's a genetic disease he has. We are now waiting on the list for a transplant but due to current events with covid, things are taking a little longer than usual. My fiance's problem is getting worse, the pain is unbearable and it hurts me to see him like this. The pain he's experiencing every day is like a solid rock at his right side, it's sharp and he can't even lay down, sit properly or even have a good night's sleep! He gets scared to even eat and I don't want to see him like this. The pain usually gets really worse at night. He's been to his local hospital nearly every day to try to stop the pain or manage it somehow but no luck, they can't find anything. Doctors advised him to take paranormal, but it doesn't even work at all.

I'm hoping there is someone out there who can give us advice? Someone else who has cirrhosis like him. What can be done to help manage the pain a bit better while we wait for the time of the transplant? Because I wish to see him ease down with the pain, I hate for him to feel like this. It breaks my heart.

Thank you.

[AyrshireK]

Is your fiance actually listed for transplant? Is he attending transplant clinic or have a contact with the transplant unit. This is something you should ask them, they may even expedite his next clinic appointment in light of these increasing symptoms. When was he last seen at the transplant hospital?

Make sure transplant team know of this pain (if that means phoning co-ordinators then do so). They need to know about the pain and the knock on effect on appetite etc. because you don't want him not eating and thereby loosing weight which could have the effect of making him too weak for transplant.

Katie

[Mo94 in reply to AyrshireK]

Hey it’s me who have this problem and yes I just signed up here .Yes I’m in a waiting list for a transplant I live in York shire but my liver doctors and coordinators in London and they know about this pain it’s been for more then 30 days and now it getting worse and worse and all they say it might be your liver expanding or stretching. This can’t be the problem it’s been for long and now days I can not even sleep or eat Normally anymore , I have been to A&E almost daily from pain getting worse and severe in the right side of my abdomen or exactly on my right rep cage , the time gets worse when I go to sleep and my body relax or when I eat , it feels like something solid like a rock or something pushing need to come out and so much noises like rumbling or like kinda water dripping from a tab, I’m also getting scared of eating, and everytime I go to A&E they find nothing even with scans and blood tests, I have no idea what to do anymore