update

[Bazinga89]

Hello all.

I haven't been here for long time as I am trying to avoid media for now. Little update (if anyone read it) my liver nurse says that I am doing very well, I managed to do some houseworks, workouts and eat well. We proceed my check ups from every 3 weeks to every 8 weeks as my blood tests back to normal. Ultrasound showed no changes in abdomen and no fliud (as I'm on water tablets 50mg).

Anyway I feel bad, quality of life is poor and they still says that liver transplant is no needed thwy think you dont need it as blood test and ultrasound is okay so everything is fine as its totally NOT!

I thought to go back to work but noone give that much support to do light job and flexi hours.

I strongly feel that I was left... as still hear you are young and give yourself a lot of time.

[borzoiharvey]

Hello, I hope things improve for you, keep up the good work and hopefully soon you will feel a lot better. The exhaustion is a bit difficult to live with I know x

[AyrshireK]

My hubby always feels like he's sort of living a half life. Ok in the grand scheme of things he's doing well with none of the symptoms of decompensated cirrhosis but not fit enough to live a normal life with the fatigue issues, sleep disruption, concentration struggles etc. Can't work or anything so it's all quality of life issues though he absolutely pushes himself to make the most of good days and his mood and outlook have improved alot with him taking up cycling.

When he was delisted from transplant list because his condition/blood tests improved therefore taking him out of the criteria we had a spell where we felt the light at the end of the tunnel had been snuffed out but we had to realise that transplant doesn't guarantee a golden ticket to a happy ever after, some people still have major issues post transplant, something like 5% don't even make it out of theatre and there is no guarantee that with all the meds you have to take post op that the fatigue will even go away - some people feel worse post op than they did before.

If you have ANY quality of life just now then make the most of the good days, sadly due to the donor organ shortage they won't give people the op just to (maybe) improve quality of life. Transplant is seen as the last ditch effort to save someones life and they won't risk the chance of you potentially dying or becoming more ill with a big op like transplant unless it is really needed to save your life.

Yes, it's an absolute bummer that you have to live with this reduced quality of life but often if your liver is stable then they can not give you a transplant - just not poorly enough.

In this period its about making the best of the life you have, write off the rubbish days but make the most of any good spells.

Katie