Partner told yesterday liver compensated (and off transplant list) - mixed emotions

[Rshc]

Partner with ARLD diagnosed 22.12.21 - after 6 months alcohol free was told bloods not improving any more and 'is as good as its going to get, time to consider a transplant'

So my partners transplant team were at our local liver unit and since listing his bloods have been steadily improving to the point now where bilirubin is just shy of normal and other indicators are all looking pretty good. So they told him a big well done and that they consider his liver to be compensated/or in the process of compensating and he is 'too well for a liver' but the truth is he feels awful most days, his fluid is very well controlled with water tablets but he aches so much and is so tired. Some days the aching is so bad he cannot move his arms and he wonders how he will carry on like this.

He also had a small varices banded in Dec. So I am wondering if eventually all of this will improve, will his body catch up with his bloods? Or will he have to cope for ever not being ill enough for transplant but not being well enough to work/travel overseas/etc etc

This sounds very ungrateful, I am so proud of him and how far he has come but the pain at times is almost unbearable and he can't take much for it

thanks

[Readlots]

You must feel really torn between being happy he’s improved and upset that he won’t get a transplant because he’s not ill enough. I don’t think you’re being ungrateful.

My kids both have T1 diabetes and it feels almost like they get punished for looking after themselves. When the latest tech comes out it’s always those with ‘poor control’ that get it. My husband reminds me that NHS resources (and certainly livers) are limited and it’s those with most need that get stuff. Doesn’t stop it smarting though.

When are they going to be able to grow livers in a Petrie dish? They’ve done test tube babies…

I can’t answer your question about living with compensated cirrhosis but I’m sure others will be on soon. Hang in there

[Ewife]

It's a really tough place to be in. My husband is very stable, so there has been questions raised as to whether he needs a transplant.......however.... its often a 'yet' thrown in. So I end up not knowing how to feel - like - forgive me for not feeling celebratory about this!! So many things he/we can't do or enjoy with him still this poorly, however stable he is. On the other hand, transplant is so risky and life changing - I get scared to push for it too.We have had a break from the list since the 1st week of summer holidays - and it's been the best thing. We've really really tried to enjoy quality time together and with our kids. The mental break, after 18months on the list has been huge. I've resigned myself to a) him never getting better than he is now -horrible process but I think has to be done, and b) that he could get worse again and transplant might still be the best option. When he had Covid, it was enlightening to see how fast he got very sick. In this fragile state, it doesn't take much to swing into seriously ill territory.

Try and focus on the positives whilst keeping an open mind (sorry, thats a really tough ask - i know only too well). Tell the team you feel like you need reassuance and lots of checks along the way, and see how it goes. Try and see this stage as a transitioning/treading water part of the journey? If it helps, your husbands progress has been really really fast compared to mine - so you have lots of hope there that he will improve yet. My husbands bilirubin is up by 20 compared to when he was listed in Jan 21.

Lots of love and take care of yourself

Ewife