My husband has decompensated cirrhosis and has very swollen legs/ankles. He has gone from living a fairly normal life in May to diagnosis in June after investigation for various symptoms. Now he is exhausted and struggles walking. Dr would not prescribe diuretics to help with this oedema due to blood test results. After abdominal drain Dr has agreed to prescribe diuretics as walking has gradually become more and more difficult especially going upstairs. However Dr has said diuretics will probably reduce his lifespan. Has anyone else experienced this? I want my husband around as long as possible but the oedema is making his life so miserable I guess it has to be a balancing act to have best quality of life during the time he has left.
Diuretics: My husband has decompensated... - British Liver Trust
Diuretics
I would imagine his blood work showed heart/kidney failure symptoms. His only option for longevity is diet at this point. Research, ask, implement. My dad died of cirrhosis. I wish I would have known at the time how to at least help him feel comfortable. My advice just be there for him
Hi Yaris, thanks. Blood tests showed low sodium but this has improved after last results. Not heart failure as we did ask about that. I am floundering a bit with diet as blood has low sodium but he was advised to have low salt diet because of the oedema. He has been struggling to eat much at all because of the ascites but I am hoping this will improve after the drainage yesterday (15 litres of fluid drained). Hoping to speak with dietician next week to try and navigate round all the contradictions!
Hi, my partner had the same. Diagnosed 23.12.21 with decompensated ARLD, was very poorly in hospital for 3 weeks. Getting drains every 10 days - was unable to tolerate diuretics due to low sodium. Re hospitalised as fluid out of control in his legs, stomach, back and groin he could hardly walk- very poorly at this stage (May 22). Was re started on diuretics - on a drip in hospital and then tablets (2 different kinds) - no mention that this would affect life span - you can go from not tolerating diuretics to being able to take them. He took them for a year and managed to get everything under control, his liver over that time has re compensated and he is down to one diuretic a day and no fluid - he is going to come off the final diuretic soon. So if anything the diuretics didn't shorten life span they aided his recovery as when he was carrying a lot of fluid this put additional strain on his liver. He went from being listed for a transplant to being told last month that liver function is almost normal, in particular albumin levels which can affect fluid retention
Very reassuring that normality can be regained through abstinence , well done , im on the same path .
Hi, sounds very similar apart from being hospitalised, so far just day stays for drainage twice. He has now been totally alcohol free since mid May (was not drinking much in the weeks before either) but getting weaker due to not eating. I had not realised that the liver could recover to that extent so maybe there is some hope. It just breaks my heart seeing him so frail. Hoping the diuretic will prevent the ascites building up again so quickly. We have been advised he would not be considered for transplant even after being alcohol free for 6 months as he would not survive the surgery. Congratulations on such a positive outcome.
I was told by a wise oncologist to use protein powder for asceticism (sp) and it helps with bruising. She said it shores up the blood vessel walls and yup, I have little bruising when I use it faithfully once a day.It was recommended to me to use SLOW burning powder at night and I use Ascent- slow and mix it with milk.
Just thoughts.
I have decompensated ARLD and I have been told I cannot have a transplant now because I wouldn’t survive it either. This made me feel more worried about what’s going to happen to me but I’m hoping now that I might get compensated at some point. I’m way better than I was. Still on dueretics and carvedilol. Trying to get used to this limbo state of living. There’s always hope 🤞👍
Have you been told why they believe he wouldn't survive it? Is it down to malnutrition? My partner had mild malnutrition at the time of his transplant assessment. It would be good for you to understand more about this and what can be done. For example is your husband having protein drinks? And a pre bed snack? It must be hard if he isn't hungry try not to worry too much about what food he is eating, as long as its low salt whatever he can stomach and if that is cake then let him eat cake. Just to give you more hope it took over a year for my partner to recompensate, he was listed for transplant last August and was suspended from the list this Jan and has just formally been completely removed from the list. It can take a long time for the liver to recover. My partner was very poorly and we were basically told that without a transplant it was terminal, now the transplant team have told him to go and live his life and that with any luck he will be around for a long time to come. If I go back and look at some of my old posts on here I felt so hopeless. He obviously isn't cured and still has some health issues
It is down to malnutrition, he has lost most of his muscle mass and not sure how to build this back if it is even possible. I am trying to keep salt intake down and trying to get as much protein into his diet as possible but it is difficult to know what he will eat on any day. At the moment he is fixated on chocolate in various forms. I have been trying to persuade him to have a Complan before bed to provide some nutrition overnight but like this evening would only have a cup of hot chocolate. Also he has a persistent cough (not covid related). Consultant says it is nothing to do with the cirrhosis, GP has prescribed an inhaler but that does not seem to be having any effect so far. It keeps him awake during the night then sleeps on and off until late morning but is exhausted all the time. It all means there is a fairly narrow window probably 8 or 9 hours to try and fit in several small meals so that is not happening. I cannot be too persistent trying to persuade him to eat more or it just develops into an argument.
I left hospital a week ago , very frail and lost 2 stone in 3 weeks , since being home my appetite has skyrocketed , PM me if you want a chat , I have Cirrhosis and on top of that became very unwell with a gall bladder infection , kind regards , Will.
I promise you it is possible to come back from malnutrition, August 2022 my partner was listed and told by a nutritionist at his transplant assessment that he had mild malnutrition, March 23, told by the transplant team he had put too much weight on and to start loosing some! Have you seen a nutritionist? That would be a good starting point, you can still ask for a referral to the transplant team as it might get the wheels in motion even if they turn him down at the moment. Hot chocolate is ok as a pre bed time snack, I remember my partner was obsessed with chocolate soon after he stopped drinking, I think that is fairly common. When he first came out of hospital I wasn't worried too much about what he was eating but as he started to feel better we followed a high protein diet, eggs cheese mushroom and spinach omelettes for breakfast, yogurts, 3 protein drinks a day. I am sure you know but the pre bedtime snack is the most important.
I wish I could get him eating like that. Yesterday managed two boiled eggs for breakfast (about 11.30am) then did not want anything else until dinner in the evening when he had a tiny amount of steak and kidney (always used to be a favourite) and a small amount of veg but left most of what he had put on the plate. Trying to aim for high protein but still a struggle. I try to include at least one Complan each day but would not have one yesterday, just hot chocolate at bedtime. Will persevere but I have to tread a fine line. I would not mind what he eats for now so long as he eats something.
I was put on Diuretics when I read the leaflet I had everything that said do not take them. I tried the m for a month made no difference at all so stopped them. Read Ayrshires post the website she recommended is very informative for different ways to help you. All the best.
Have you spoken to anyone about palliative care? It doesn’t mean you’re dying - it helps you get the most out of life. I did a self referral to our local hospice for Mum and it opened the doors to so much support. For her and for us. Your GP should be able to refer you, but I’d give your local hospice a ring. There is all sorts they may be able to do to help. Good luck
The consultant has sent a referral to palliative care so we are just waiting for some contact.
I’m glad they’ve put that in motion for you. Have you tried mini ice creams for your husband? Small and often is the secret when the don’t feel like eating. Big platefuls of food can be daunting. Also old fashioned school dinner puds like tapioca or rice pudding that slide down seemed to work with my parents. Hang in there
I am going through the same thing . I have advanced stage cirrhosis of the liver . It’s VERY difficult to walk , my feet hurt and I’m am Beyond tired . Wish I was married, I wish I had someone to love and care for me .
Sorry to read this, I hope you can find the support you need soon.
sending you a virtual hug and hoping that you get a transplant and a chance to find love in recovery
I hope things improve for your husband and you. My partner has decompensated and recompensated a couple of times, it really does happen. The worst episode, when he became very malnourished, was after a virus, suspected Covid but not confirmed. So press your GP to give both of you the jabs for Covid and Flu if you don't already qualify, your consultant or specialist nurse should strongly support that. You have had some very good advice posted here. I would say that the diuretics (in our case spironolactone and furosemide) can require fine tuning to find the right maintenance dose. Nobody tells me off for adjusting the dose a little up or down if my partner says he something feels different in himself. With our consultant's agreement he is also a little flexible on the timing that he takes them. If we are going somewhere that may not have a public toilet in striking distance we will go early morning and then he will take the tablets when we get back i.e. 2 or 3 hours later than usual. Have you been told to control liquid intake? That can be quite important to help the diuretics start to do their job and preserve sodium, but need to be done sensibly. We have a target, but that will vary depending on body weight, kidney function etc. If you haven't had that advice I would ask. In the recent heatwave more flexibility was needed. Our consultant and diabetic nurse agreed with my thoughts that within that target you should 'follow your thirst', taking frequent sips rather than big drinks in one go. We have seen a nutritionist and he requested a prescription for Aymes supplements. They come as smoothies, milk shakes and savoury soups. The milk shakes made with whole milk really helped build up strength. They aren't too sweet and if you have a blender that can smash frozen fruit and ice cubes it comes out like an ice cream sundae. I just looked and they do a Chocolate shake that is on Amazon, seven for less than £10, you could try that and if it's OK ask for it to be prescribed. The soup is good as one of the bedtime snacks and is quite comforting now that it is Autumn. Our GP is very good about doing blood test that they review along with the consultant, every 2 weeks at the moment to check kidney function. That's what I have for now. Best wishes to you both.
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