referred

[lonmallin50]

just been referred to QE Birmingham to transplant team yesterday really worried about it all my brother wants to give me half of his liver and don't want for him to go through with it. anyone out there who can't stop drinking I urge them to stop straight away the stress of it all, is not worth it, I had a pub when i was 20 so it was all around me 49 now. I just thought people get liver disease drinking bottles of vodka day and night how wrong I was I never touched shorts at all only pints and wine with dinner i just thought no pain no illness how wrong I was again. if you got compensated liver it stime to stop before its gets de compensated I wish I would have listened, I have not had a drink now for 8 months now my bilirubin level is still high, anyone who has not reached that stage, yet you still got a second chance take it, being off the drink I feel a lot better sleeping great anyone who can't stop just try for a week the difference you feel is a lot better than any drink trust me. anyone out there had a transplant, i read they are successful in and out of hospital in a couple of weeks.

lon

[Rshc]

hi, you have done so so well to get this far. My partner stopped drinking last December and has just been listed for transplant HOWEVER his bloods continue to slightly improve each time so its worth bearing in mind that although they do say that by 6 months post drinking you may not improve further that is not always the case. Keep looking after yourself, stay away from alcohol in all its forms, in food, in mouth wash, eat a balance diet and try and exercise as much as you can even just walking and you will be giving yourself the very best chance of further recovery or making sure you are as fit as you can be to get through the transplant assessment.

I know transplant is a very scary thing to be talking about but try not to worry too much, you are in very safe hands, have you been allocated a transplant co ordinator? We found that early in the process our co ordinator was the best person to talk to as she knew my partners case and was able to support us with advice and facts.

[lonmallin50 in reply to Rshc]

no not been al allocated yet it was only yesterday i was told just a bit scared of the whole thing lucky i got a very supported family behind me

[Rshc in reply to lonmallin50]

I promise the more you talk about it the less scary it is. Back in April when they first mentioned transplant as a possibility to my partner he couldn't even say the word, now he is desperate to get it done and is worried that he might get just well enough to be taken off the list

[lonmallin50 in reply to Rshc]

how long has he had de compensated liver for

[Rshc in reply to lonmallin50]

he was diagnosed with decompensated cirrhosis 22.12.21 - that was the first time he had attended hospital. At the time he was told that his liver may recompensate but his bloods started to get worse around April and he was quite poorly. However since then, over the past few months they have slightly improved each month. So just keep doing everything you are told to do by your liver team

[lonmallin50 in reply to Rshc]

thank you for you replies

[BritishLiverTrust4]

Dear lonmallin50

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

If you are in the UK and 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

[johndavidliver]

good luck my friend. Can't give you any advice but keep doing what you are doing.

[lonmallin50 in reply to johndavidliver]

thank you

[Yellowsydney]

Dont be scared the transplant team have seen it all before, initially they just want to talk to you and discuss options, if they think you need a transplant you will have an assessment to make sure you are fit enough to survive what is one of the most complicated surgeries you could have. When transplant was first mentioned to me I told the doctor not to be so stupid I wasn't ill, it took many consultants to convince me. I had NASH cirrhosis.

Well done for stopping drinking, the first step in recovery.

if you use Facebook we have a very friendly and knowledgeable group called liver transplant support uk. You would be very welcome.

Hilary

[lonmallin50 in reply to Yellowsydney]

thanks for reply

[Kristian]

Well done so far, you've done great. From a Transplant perspective, the folks at the QE are brill and will really take care of you. Timescales wise, your pretty spot on, think the average hospital stay after transplant used to be about 10 days, but I suspect that may be coming down a bit. I was out after 8 and that was with a fairly complicated procedure and a bit of an extended stay in ICU afterwards. After that its just a case of taking things at your own pace and getting the strength back over time. It can take a while to fully recover, but you'll definitely feel the difference, so its definitely worth it. Just be patient. I'm 5 years post transplant now and doing great.

[VickiSpence]

Same here. Beer and seltzer was my go to. I never considered that would end up in cirrhosis. But here we are at 48! Your advice is solid!