Decompensated liver

[Tk64]

My husband has had 2 recent hospital stays, a week apart,both times had ascites drained ..9 litres first time 12.8 the 2nd time...home now but has no energy at all...lost just under 5 stone in about 7 weeks...the tiredness is crippling him...very poor appetite too....his meld score is 22 so unless anything changes transplant wait time is over 2 years....just wondered if things might improve ?...or is this his life till transplant ....any advice would be great ❤

[Isabelle2]

Oh dear, poor both of you

It sounds pretty bad. The first thing is that he needs to get stronger.

As long as he keeps to the diet, keeps up the protein and avoids what caused him the cirrhosis in the first place (drink or bad diet) or keeps the initial medical problem at bay, then it should get better.

However, as someone who too had cirrhosis, I know it can be difficult to feel like eating. I loved nibbles, not a full plate of food but little things. If you give him a big plate of food he might find it overwhelming. Try little things, like you’d do for drinks - sausage rolls, salmon on blinis with a bit of cream cheese, old fashioned cheese and pineapple, cherry tomatoes, etc. Hopefully he’ll graze and not quite realise how much he’s been eating.

Is he on protein shakes? I liked them but they can be too thick for some people to drink as they feel they are being fed concrete which then sits heavy in the stomach. If he finds them difficult then he must try to have a sip every 5 or 10 mins. Let him have them over time.

Apart from food I can say nothing except keep his morale up and try to get him up and about, so long as his strength permits. My family, hubby and kids where what made me pull through. I am sending you positive thoughts, both of you, so you can make your way through this awful time.

Isabelle xx

[Plaingirl]

Hi Tk64, I'm sorry your husband is so poorly.

I had 4 drains from October 2016-Feb 2017 ranging from 8 to 12 litres a time & felt terrible. I was in hospital for a month over Christmas that year & had gone down to 5 1/2 stone. Being a 5 foot 5 female I was like a skeleton.

With the help of diuretics & complete abstinence from alcohol I am now back up to 9 stone.

I couldn't eat at first. My dietician put me on ensure drinks & told me to eat anything I could that wasn't salt laden. I used to eat yoghurt, cake, toast soldiers, fruit & cereal until my weight started building up.

If he's still filling up then it will decrease his appetite as he will always feel full so little & often is best.

Good luck to you both xx

[Bulldog97]

I have had a very simular experience losing 6 stone in two months and having to be fed by a gastric tube and IV albumin. I developed severe muscle atrophy . I really didn't take to the shakes but started with bone broth (mine was from grass fed beef) and then home made soups then adding in small amounts of great quality meats for the protein. I am now eating for England and I have put 15kg (mostly muscle) back on. I do spend most of the day grazing on things like cherry tomatoes and frozen blueberris (although I know there is doubt about the goodness of blueberries) and texture is so important to me and meals need sauces or gravy as I give up on dry foods easy. Sorry I'm now rambling but it can get get better.

[moonbeam4 in reply to Bulldog97]

Bulldog, where did you hear that blueberries may not be good for us?.😕 I have always thought the opposite and eat tonnes of them as well as the other berries. I know it,s important to try and buy organic as the berries are often sprayed with pesticides etc, maybe that was the concern you had heard about? Certainly hope so I love my blueberry porridge in the mornings it sets me up for the entire day. So pleased that things are going better for you now, take care Bulldog. 🌻🌼🌻🐝

[Bulldog97 in reply to moonbeam4]

Hi moonbeam4.

I read about the blueberries on a post on here somewhere but I eat up to 1KG (of frozen ones) a day.

[moonbeam4]

Hi, so sorry when I read your post, try and hang in there the darkest night is followed by the dawn, things can and do get better, we have heard some wonderful uplifting stories of people in the most dreadfull of circumstances. I am not a transplant person and many here can advise you better but I believe that transplants are on the basis of greatest need rather than a two year wait . The sickest go to the top of the list rather than wait in line as I understand the system, though someone may correct me. I know of one lady who was listed and then got " the call" a day later, she is now healthier than she,s was before she took ill or so she is fond of telling folk, i think that maybe a slight exaggeration 😂😃😁 If you haven,t already you can ask your Doctor to see a dietician with hubby, they are an enormous help. Also, I expect you know that hubby must be at least 6 months free of any drinking etc, I believe that includes smoking but I,m not 100 % sure. Please make time to look after yourself, you will be no use to anyone if you burn out, I,ve often seen and heard of carers who exhaust themseves and can no longer continue. My mum was one case in point. Dad had kidney disease, was waiting for a transplant and it got to where she was totally unable to cope ( some her problems were self inflicted as she refused any outside help saying they cauld manage). Well, My father ended up in a home and she had a heart attack 2 days later, followed by a stroke and was left in a wheelchair and also has had to go into a different nursing home. Don,t be afraid to ask for help if you need it both financial and practical, someone here can tell you where to contact. Best wishes to you both, please keep us informed how things are going. ☺ xx