Hi I've joined this group for my hubby ste and also myself sue ..ste has decompansated alcohol liver disease since oct 21
He has ascites which is controlled by diuretics he suffers insomnia really bad also constipation and cramp in his legs and hands we havnt had his first appointment at the liver clinic yet "he got lost in the system " due to being in hospital at the time he should have attended I did ring to let them know he was in hospital but they didnt cancel his appointment so was put as a no show so now its sorted and we are waiting for another appointment to come through so now where we are stuck is we are told it's going to be a long rd before they can say how things are ste has stopped drinking his last drink was 9th oct but his health isnt getting better is this how hes going to be ?? I seriously thinking of reducing my hrs t work I have to deal with everything finances running the home making sure he takes his meds as his memory has changed also but worry if I change my hrs what if he improves but deep down I dont think he will my day consists of 3 to 4 hours sleep stes is worse we are holding on as best we can ste work are understanding he only gets ssp but how long they will keep his job open we just dont know and to be honest I doubt he will return he was a welder doing 10 hours a day theres no way he could do that he doesnt even drive now so where do we go from here 🙄
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Lippy42
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You need to take him to your GP and say he needs all the medication and vitamins to keep him healthy. You need to see a dietitian and get the best diet to suit his stage of liver disease. No salt or as little as possible. Get plenty of vegetables and fruits. Chicken and rice ovoid salts. If the GP doesn't come through, go to A&E and tell them he has decompensated cirrhosis of the liver and his condition is getting worse and he needs to see a liver specialist to move forward. Do it now... Keep pushing because this can be reversed... be strong...
Sorry Danny I forgot to say we have reduced salt and anything that's high content salt he is on thiamine and 2 protein drinks a day folic acid and lactulose just hearing you say it can be reversed has given me hope thankyou 🥰
Not been told anything yet still waiting for his appointment .ste got diagnosed in hospital he was in for a week in oct when all this was detected through blood tests and scans then he was back in hospital a week before christmas when he developed ascites and jaundice this is when they put him on the thiamine diuretics folic and protein drinks and said wait for referral to liver clinic we still waiting
You really need to find out what stage he is.... The diet is different, but for the time being I would get him to eat 5 small meals a day with protein in each one, cut sugar down nothing greasy or deep fried, saturated fat foods or a massive no, no. I. E. Crisps, cheesy crackers, bread sticks. The diet brings you back around with exercise (even walking around the block) as little and as much as he can.
Hello, the worst thing about living with Liver disease is the unpredictability about everything!! I really feel for you. I think it takes much longer than you expect to feel better from abstaining alcohol, and making lifestyle changes so you have the hope that things could well improve yet .....
You have to go with your gut about work - everyone feels different . Personally, I dropped everything I was doing to care for my husband and young family. I nearly lost him with a bad bleed. I have also suffered sudden bereavement recently with close family members, and it's made me want to hold on tight to everything that's dear to me.
However, other carers have struggled and needed to work for financial reasons and also to have a break from caring, and to retain that feeling of doing something for themselves - which is completely understandable. I have definately struggled with a loss of identity, we have a very different lifestyle to what we used to enjoy.
Think it through carefully what you do - how will it feel in a few years time about what you decide to do now??
My therapist (yes, I do use one, and am not ashamed of it!) always tells me to be kind to myself, talk to myself as I would to one of my friends - what would I tell them to do if they were in my situation?
Sincerely wishing you all the best, I hope things will get easier soon,
Yes i totally understand .our lives to have changed drastically ste doesnt go out much yet as he has more bad days than good but when he feels ok he will come out with me only to the shop and we not out for long I still try to do things with friends not expensive treats just coffee out or round to theirs for a brew . financially things are unsure we have my part time wage and stes ssp but in our position weve now realised money is not everything health is better than wealth 🙄 I get where you said about wanting to be with your family I feel exactly the same I feel I need to protect ste and do as much as I can to make him comfortable and keep him company he doesnt sleep much at all so he must get fed up .the start of this is so frustrating as it's a waiting game to see if he will improve but as they same times a healer he is doing things to try help his liver so his diet has become our main focus .I hope all works ok good for you and your family and thankyou for the chat 💕
Hello lippy, I think Katie is clued up with help from personal independent payment (PIP) that can help with disability payments for help through treatment and hospital admissions. I think you can get a work capability assessment as well. I found things like that hard to concentrate through because I had HE with decompensated cirrhosis stage 4 and that became my priority, like you said health is more important but it can add stress which doesn't help with recovery.... I know believe you me!!! I hope this helps... Danny x 😀
Hi I was diagnosed with decompensated stage 4 liver cirrhosis last year I had 3 bleeds and my life was saved 3times. I spent 3months in hospital I have been home now since end of October I saw my liver nurse yesterday and had great news that my liver is now compensating and working I have liver scan every 6 months and see my consultant in March. Lactose got rid of ascites. Best wishes for your husband
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