Quick deterioration

[MrsWorried]

4 weeks after his last admission hubby eventually agreed to go back to hospital. I'm shocked at how frail he now is, shuffling across to the bathroom. Can't get a sense of his liver health. Apparently diuretics stopped, giving him albumin, and there is some kidney damage? They then have to reinstate diuretics, possibly different dosage. He's barely eating, has some sickness and diarrhoea, and his skin is more itchy than ever. He's so thin, lost so much muscle, the staff keep calling me his daughter- have to remind them I'm his wife, only 5 years younger. The first 3 days he didn't recognise anyone, now he does but he's not got energy for a long visit. So many questions - has he got the stamina to pull through? How ill is he? How will he cope at home, if he ever gets back? Anyone else been there? What questions should I be asking?

[Rshc]

I am so very sorry to hear all of this. Can I ask if he is still drinking? Of course you know all of this, but that is probably the most significant thing he can do in order to try and improve his condition. My partner has been on, off, and on again diuretics due to low sodium, it isn't uncommon. Do you have a clear picture of whether the kidney damage is likely to resolve, it could be that his kidneys were struggling due to the diuretics rather than a permanent state of damage? Is he suffering from jaundice? High billirubin could be the cause, there are things they may be able to prescribe for the itch. If he isn't feeling much like eating have they prescribed anything such as fortisip for him? It is very difficult to encourage someone feeling sick to eat but anything he fancies at this moment would be better than nothing just to try and build him back up. When my partner was quite poorly he was basically living off cake.

[MrsWorried in reply to Rshc]

Thanks for your kind words. He was still drinking before he was admitted last week, obviously nothing in hospital and he never mentions it, always amazes me how he can stop booze and fags yet needs them at home?No idea about kidney damage apart from nursing team saying there is some.

No jaundice.

He is given Fortisip, gather he had one drink yesterday. We have a large box at home but he refuses them here.

Lying in bed, hardly moving, he's wasting away. Hard to see.

[Rshc in reply to MrsWorried]

It must be very very tough to watch. I think the fortisips can be hard to stomach if feeling sick, they do a juice version, he may find that easier. The other thing we do is keep them in the fridge as my partner finds them easier to drink cold, I have seen suggestions of freezing them in lolly molds too. Has your husband been seen by an alcohol nurse? It might be good whilst he is in hospital to see if anyone could stop by and have a chat with him.

[MrsWorried in reply to Rshc]

He has an addictions nurse who visits us at home weekly. Although he's cut back he still can't/ won't quit. Never been one to do what he's told.I've heard about juice ones but not sure we can get them here.

[MrsWorried in reply to Rshc]

Should have said, I find it really hard to get updates from nursing team. No matter what time I go to hospital (over 100 mile round trip) the person I need to speak to is on lunch, on a break, in a meeting etc

[Rshc in reply to MrsWorried]

that must be very hard and what a long trip you have, I am forever grateful we have a liver unit 10 minutes from home. Is he being cared for in a specialised liver unit? I would probably get hold of the consultant secretaries number and go directly to them if you are not having much luck getting updates from nurses. Do not feel like you are being a pain if you keep calling and leaving messages, they will eventually get back to you. When my partner was hospitalised for 3 weeks in Dec last year I called all the time and I still do if there is something I am worried about. They may think I am a pain and in a way I hope they do

[MrsWorried in reply to Rshc]

No he's on a general ward. Only seen a liver consultant once in July when cirrhosis confirmed. I think he's slipped through the net. Or being ignored as he's still drinking?

[Guppy26]

Hi there,

I posted on here a month or so ago, my mum sounds very similar to your partner. It might be worth asking for the name of the consultant in charge of your partner and asking for them to call you back. Once you have a name, if they dont call you back you can at least demand to see them.

My mum is currently in hospital and I've pushed hard to get more done to understand what state her liver is in. Even after having a liver scan which shows fibrosis I was being told she did have compensated cirrhosis to she doesnt have a liver disease when all the symptoms I see are decompensated cirrhosis. I dont think the scans show everything. One of the doctors has agreed to consult a gastro expert- perhaps you could ask for one for your partner. Until they know what stage of liver disease someone is at they risk making the wrong decisions about post hospital care.

It's a nightmare of a rollercoaster, hang in there.

[MrsWorried in reply to Guppy26]

Thanks Guppy26, I'm definitely going to ask some questions. Hope your Mum is doing okay x

[lonmallin50]

Hopefully he might stop drinking now it took me a bad spell in hospital to snap out of it not drank now for 10 month's now but I left it to late need a transplant now

[MrsWorried in reply to lonmallin50]

It may be the start of sobriety for him, who knows? Hope you're keeping OK xx

[zeplianbettlespage]

Is it possible for him to get protein in a drinkable form? I'd be very concerned with the wasting process. Also if you need to make the drink tasty include something he enjoys like some ice cream and as long as he doesn't have a problem with salt try some nuts with salt.

[MrsWorried in reply to zeplianbettlespage]

There are protein drinks supplied in hospital and on prescription but he's not keen.Liver patients generally follow no salt diet but he does occasionally eat nuts