terminal illness

[Mango5cm]

my son was diagnosed with cirrhosis through alcohol 2 and a half years ago . He was given 2. -3 month to live . He stopped all alcohol immediately . Since then he’s had a TIPS procedure for ascities and he takes water tablets . His bloods are nearly all stable and the only symptoms he has is ascities annd tiredness he gets drained every two weeks usually about 6 litres - he has a permanent rocket drain . He keeps googling to try and find out what his life expectancy is even though I’ve told him and his consultant has told him everyone is different and no one can tell you . He’s asked me to try and find out ! He can’t get the worry out of his head and I’m trying to help . Any thoughts would be helpful .

[AyrshireK]

What age is he again? Has he never been referred for consideration for transplant? Having diuretic resistant ascites and still being regularly drained should make him somewhat of a priority providing he meets all criteria.

Katie

[Mango5cm in reply to AyrshireK]

Hi Katie - he’s 64 and he’s been assessed for a transplant at Freemans . They didn’t list him as they said he wasn’t ill enough or fit enough .

[BritishLiverTrust11 Moderator]

Hello

If you (or your son) are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

If you or your son would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[kensimmons]

You should do everything to get him on the transplant list. Good for him for improving his lifestyle. That should improve his health and thus increase his chances of approval (at least I would imagine it would be so). Don't give up and good luck,

[Mango5cm in reply to kensimmons]

Thank you for your advice and encouragement

[juneblue]

I was about in the same condition 2.5 years ago. Almost died twice. Once from extreme ammonia levels the other from an incarcerated hernia. I had many drains. I came to terms with death but was not ready to die. My faith is strong with God and I know there is a much better place that awaits us. I tell many people that quality of life trumps quantity of life. Many people live their entire life in anticipation of death. Jesus said worry about today, Let me worry about tomorrow.

I fought back with exercise , diet and attitude. At first it took every ounce of strength just to prepare to go to a gym. Some days I just made it there and turned around and went home. That was success. It took about six months to fit and claw my way back to relatively good health. Currently, I can walk, run 5 miles, lift weights, work etc. No more drains. Liver working relatively good. You have to fight for life. Free will. I enjoy every day with, fly, friend, etc. I don’t worry about dying. All of us are going to die. God bless you and yours. I’ll pray for you.