Decompensated liver

[Paul43]

I'm fairly new to this I've been diagnosed with decompensated liver and ascites and a swollen spleen I quit drinking when I found out 10 months ago and haven't touched any since but my blood works keep getting worse and not better ie my platelets were 80 when I quit and have continued to drop themy are now 55 my childs pugh score is B9 and my ukeld is 49.2 my liver specialist said I am border line for a transplant but has said nothing more as yet my next appointment is in June anyway I was wondering if anybody had any idea as to what outcome I may be facing as obviously Google is not a great read lol any info would be greatly appreciated thank you

[Hidden]

Hi and welcome Paul,

Only your own liver team can advise on your specific stage of liver disease and possible outcomes.

However, If you would like a supportive chat, our nurse led helpline is open Mon to Fri 10am to 3pm on 0800 652 7330

[Paul43 in reply to Hidden]

Hi and thank you for the reply I'm not really looking for an actual fact answer just wondered if anyone else has similar or been through similar I think for me and probably most people on here it's the waiting to find out from specialist but at same time don't want to bug him with lots of questions when I know there are others also waiting or maybe even worse off than me but unfortunately I'm one of those people who just has to know one way or the other obviously everyone is different so I don't expect the exact answer just maybe based on my figures what possible outcomes are and maybe some advice on what sort of diet and exercise although I can't do a great deal as I get very tired quite quickly anyway thank you for your time and your response ( I also have portal hypertension which they gave me beater blockers for but unfortunately I could not take them as had extremely bad nightmares when and if I could sleep while taking them and now they have stopped them so I'm only on omeprazole ) again any tips or thoughts would be appreciated thank you

[Hidden in reply to Paul43]

Give the helpline a call and we will be happy to talk to you

[Kristian]

Hi Paul,

I think you've made the best start already and what you've done puts you in good stead. Hopefully you'll not need a transplant in the end and with a score of 49.2 you are pretty borderline and it wouldn't take much improvement for that to reduce further. I did have a play with the algorithms when I was waiting and found you didnt have to have very high results to get over that 49 score anyway, lol.

Clearly things are still afoot with your platelets dropping, you having ascites and your other symptoms and complications. So hopefully they can get those under control. However, if not and if transplant is needed then for me the outcomes have all been positive.

I know what you mean with the beta blockers too, lol. Didn't have the nightmares but in the first few weeks after starting them getting to sleep was really difficult. I even drove down to the waterfront at Liverpool from Manchester at 2 in the morning one night to try and make myself soo knackered I had no choice but to sleep. It didn't really work though 😄😄😄. However, eventually I did acclimatise and whilst it wasn't perfect I could at least eventually get some sleep.

Good luck.

[Flonightingale]

My partner has End Stage Liver Disease and has recently been prescribed Rifaximin for Hepatic Encephalopathy which causes him to have episodes of confusion and disorientation. His Consultant told him 4 weeks ago he needs this medication for the rest of his life. Failing this medication working he too will need a Transplant. At 60 with a long history of alcohol abuse I seriously doubt that will happen.

[Livaa in reply to Flonightingale]

I am 60, and jokingly like to say that "I had 56 good years of drinking!" have ALC (ESLD) and may need to be on another medicine the rest of my life as well, but all of my scores are slowly improving and I am in wonderful in otherwise good health so and encourage you and your partner to keep your chins up. I finally want to quit drinking. hugs to you both.

[LaLola77 in reply to Livaa]

Wonderful you can do it ❤️

[Cat-B]

I was in the same position 5 years ago, I was very strict with my diet, absolutely no salt, high protein and carbohydrates including a bed time snack ( after I had brushed my teeth, my brother is dentist and said it was more important to eat!) I had no appetite so I ate small amounts ( I started with a ramekin dish and ate by the clock every 2 hours then I progressed to a side plate ( it took 18 months to get to three meals on a dinner plate) . Take it slowly so your body can adjust. I’m now into year 6 and I avoided a transplant! Good luck, let me know if I can help more x

[Livaa in reply to Cat-B]

Same way , Cat-B, I was down to drinking broth, nibbling and never cleaning my plate. low refined sugar, tons of greens and raw nuts, salads (organic), natural sources of meats, and dark green veggies, Eat alternative grains (brown rice, quinoa, couscous, etc., red, sweet potatoes. 2 months sober and eating the way I knew I should have been (not processed...that means if you can't pronounce it, don't eat it!)and my scores are all improving.

[Ewife]

Hello Paul, welcome to the journey where nothing will ever be very certain again!!!!! It's seems Livers are very individual, independent organs with a mind of their own! Even the best drs and consultants can't really predict which way things will go - what happens for one person could be totally different to you.I will say that it seems the effort you put in to healthy lifestyle definately plays a part so you have exactly the right mindset. Be aware that it can take a long time to feel the benefits from abstinence- I imagine it's like someone having been in an abusive relationship - the Liver needs to learn to trust again!

I cook a lot for my husband ( he has cirrhosis) we loosely follow a Mediterranean/pure foods/white meat and fish diet. He doesn't tolerate red meats very well but bit don't know if that's just him, so this tends to be a treat at the weekend or something. I feel like I'm in better control and know what's going into him - eg. Less salt, fats, sugar, no preservatives etc. I do a lot of batch meals and freeze them so that has made my life easier too.

We are probably not as strict as some would be but hey, he has cut alcohol out of his life already, we have to enjoy ourselves sometimes!!

Others can probably offer you much more advice than me, but one thing for sure, no-one will be able to predict what happens!! Just when I think I've adapted, something else changes, so I've kind of learnt to make change part of my lifestyle if that makes sense.

Atb

Ewife

[Paul43 in reply to Ewife]

Thank you for your reply a d that's a good way of looking at it ( abusive relationship ) it's more the not knowing for me drives me mad but at same time I'm also abit well could get hit by a bus tomorrow!? Should just enjoy life and what will be will be one of th3 main downsides is 8ve give up drink b4 and felt soo much better for it after a cpl of weeks but this time it just won't go the tiredness ect hopefully in time it might also I don't know if this is just me but this time I've found that I'm constantly thirsty but not normal thirst bad way to put it but like a vampire NEEDS blood no matter how much water juice ect the thirst is still there ( I'm obviously not going to have a beer which is what I think it wants ) anyway thank you for your reply and hope ya hubby feels at least abit better soon and I'm sure he appreciates you x

[Ewife in reply to Paul43]

Haha.....I get you. I'm one of life's planners - I have a back up plan for a back up plan these days. However my husband is more laid back and says exactly the same thing to me about being run over by a bus! And it's true - my brother in law sadly passed away in July with no warning whatsoever - so its driven home in me a need to enjoy the moment. Worth mentioning your thirst next time you see docs - it could be a number of things they may want to check. You want to watch how much fluid intake a bit if you have ascites. But it could be sugar cravings if it's sugary drinks you tend to reach for. This is common apparently when you come off alcohol, but I reckon a lot of my husbands sugar intake is a result of the fatigue he suffers. He craves sugar boosts to keep him going 😏

[Paul43 in reply to Ewife]

Sorry was chewing a Mars bar lol I definitely crave sugar especially when I first quit all I could eat was chocolate and lots of it lol have settled it down now abit but yes could be the missing sugar from alcohol that my body is trying to replace I read somewhere that it can release endorphins/ dopamine ( I think that's what they were ) basically gives you a kind of boost / high that ya body is used to as for sugary drinks I must admit really enjoying full fat Coke but draught coke not sure y just tastes much better than btl or can going to invest in a soda stream I think lol but to be honest just mainly drinking water and having a can of nourishment milk shakes a day they have pretty much every vitamin in them and quite cheap on amazon and sorry to hear about your brother 😥 always hear if ya need a chat x

[Aotea2012]

Try not to google. It’s not a great way to spend your time when you have liver disease. You’ll be booking your own funeral if you take it too seriously. Your consultant is the best person to advise you on your clinical picture as they have all the facts, blood tests and scan results plus countless years clinical experience available to them. They will have seen it before and many variations on a theme. You are doing the right thing by staying away from alcohol. Whatever is going on with your liver it can only be made better by removing alcohol from the equation. As others have said good diet and exercise will help too. I remember my consultant saying to me when I was in hospital....it’s taken a while to do this to your liver, it’s going to take some time for it to forgive you....I’m pretty impatient and just did everything extremely at first which wasn’t sustainable. So too strict with my diet, trying to do too much exercise and too much worry about every ache and pain. Then I got into a bit of a rhythm, stopped worrying too much and did things a bit more sensibly. I’m much better now. In fact living a normal life. I still have cirrhosis but I’ve learnt to listen to my body a lot more. So if I’m tired I rest. If I’m hungry I eat. Sounds crazy, but how many times when we’re rushing around do we ignore those things. I know I did. I still worry....I’ve an upcoming appointment with my consultant and am concerned about what my bloods and scan may show. I feel well though so whatever my bloods may be showing my quality of life is good. Which is the important thing. I guess it’s a bit of a journey and time is the guide as to where that goes. Hopefully as time passes and you do the right things you’ll get better and better and that your body is just adjusting at the moment.

[Paul43]

Thank you for your reply I'm definitely staying away from Google ect it's just difficult not to look things up ( I'm kinda need to know now person lol ) i know were all different and have different views on life ect but staying positive is quite difficult after being an alcoholic or any addict I imagine as your so used to thinking a certain way as in all negative thoughts that it obviously takes time not just for your body to heal but for your thought process ( like me for instance I was " happy " drinking thinking about watching kids grow up holidays ect when in reality I was sat on a sofa getting pissed and not doing anything and kids wernt happy watching me kill myself but again in my mind all was fine ) then I had some pains in stomach when to doc who sent me to hospital had jaundice ect basically then I quit but since quitting it feels like " I've quit drinking like everyone wanted me to amd now I'm dying with decompensated liver ascites swollen spleen hypertension ect but around a month after was when I started to actually see that those thoughts were the alcoholic side telling me that it's everyone else's fault I'm ill for making me quit I would have been fine if I carried on drinking !! Lol but now mentally I'm back I do feel much better kids and wife are much happier too obviously this is a worry but as you say remaining off alcohol is definitely a very good step my diet as with most alcoholics was really bad anyway but now I'm making myself have breakfast lunch and dinner I wouldn't say I was following a perfect diet but I do think that anything I have now is better than what I was having and much like you I also get tired quite quick so exercise at the moment is very little but I do take my dog for a walk or kids to park then have a rest often a snooze as for the thirst I don't know if that will ever go maybe it's a mind over matter thing just constantly thirsty but water ect not taking it away ( although I drink alot of water now which in the beginning they told me to they now say don't drink to much fluid as bad for ascites can't win !! Lol same with fruit I've started eating fruit and orange juice ect went to dentist the other day and they said should try to avoid apples oranges ect as bad for your teeth lol grr obviously docs know what they are talking about but in thier area ( would love to get a team of doctors dietitians and dentists ect in a room to come up with a diet plan lol would be funny to watch lol as for the journey I think that we all only know are own bodies and should do whatever feels right for you your body will tell you what ut needs it is built to survive anyway thanks again for the reply and happy to chat anytime paul

[Lils2019]

Hi Paul,My husband was diagnosed with decompensated cirrhosis April 2021, 10 months after been admitted to A&E with bleeding varices.

He spent time in ICU and gave up the booze.

He saw his consultant last April and they have been doing regular checks, scans, endoscopies, bloods etc. He said he wanted him to go 12 months drink free, and see where his baseline was regarding his bloods and he was borderline for transplant.

Roll on to August and he did a referral to the QEB as he didn’t think he was going to get better without intervention.

He also has a major problem with sugar, and he was told to more or less eat what he wants but steer clear of salt and processed foods.

He has what I call sugar crashes, where he goes low however that is a liver issue, as it can’t store the energy his body needs, he has also lost a lot of muscle mass and was told to start exercising, however this is proving difficult, he has cataracts and can’t see properly and also suffers with swelling of his feet and legs, add into the mix his arthritis too, and he finds it very difficult.

Husband also suffers with chronic fatigue, feels generally unwell most of the time. He sleeps alot, also on alot of medication, rifaximin, lactulose, folic acid, iron, carvedilol, lanzoprazole.

So here we are… and I find it very difficult and frustrating some days.

Take care x

[Paul43]

Bless I know it can't be easy for you either I expect you feel mixed feelings really as yes it's good he has quit but you now have to deal with the aftermath of what he has done to himself x as for the sugar I think that the body is trying to replace whats missing ie sugar from alcohol but I do agree should eat whatever he can really as surely that's better than not eating at all when an alcoholic but obviously try to keep to fairly healthy foods I must admit I don't know what qeb is ?? And I think that he should take it steady exercise when and if he can it doesn't mean go for a jog or something I personally just take the dog for a walk or whatever I can which can tire me out we are all different and it's a long slow process but I would also like to say that you need to take care of you too obviously your going to worry ect but make sure you take time for yourself even if it's just a quick walk along the beach sea air clears the head or go get ya hair done whatever it is to help keep you sane anyway always here if ya need a chat and thank you for the reply x

[Lils2019]

QEB, is Queen Elizabeth Hospital Birmingham.That’s one thing I do, do, I do look after me, if the house is a mess, and I don’t have time to sort it then it stays a mess lol

I currently work full time, and have no intention of giving up my job, much to husbands disgust, he thinks I should be home looking after him, I’ve worked really hard to get where I am and should be completing my level 3 in health and social care hopefully in may this year. Just my exams left to do. Gives me direction and focus and I absolutely love my job.

I also walk miles with our dog, helps me clear my head after a difficult day 😊

Take care x

[Paul43 in reply to Lils2019]

Bless ya I remember my Mrs going through all those exams ect feels like a life time ago now lol but she has moved all the way up now and now over sees 6 nursing homes but the training and changes of policies ect continuously changes especially with covid ect shes forever changing them to keep up with guidelines ect lol lucky to have her well when I see her lol

[Meteocal1]

I just thank god for having placed such an understanding, and supporting spouse who understands the fact that alcoholism is a disease on itself. I know it’s a very difficult to deal with the cirrosis now. The fatigue, the sugar cravings, and the stress of wondering what is next. Just keep sober and follow your doctors advice, Paul,

[aaaaaaaaaaaadergt]

I am in the same boat I go see my consultant in April meld 10 last time but I think I might be on the list soon it all depends on the simtemes icky skin yellow belly acities