My partner was diagnosed with decompensated liver disease a year ago and is not making good progress. He is painfully thin and I suspect is suffering from malnutrition. Every day is a struggle - he feels ill all the time and we are both really worried about his future. Since his diagnosis he has only been able to have telephone conversations with the hospital consultant (due to COVID) - though he has been in for a scan. His GP is trying, but nothing works. He has spoken to a nutritionist (referred by GP) who was useless, has sought help from a private liver consultant who was no real help and we are at our wits end about how to improve his situation. The lack of medical support has been staggering. He has done so well - has not drunk alcohol since his diagnosis, takes all his medication and is really trying to eat a good diet and follow advice we find online. Nothing is helping. What to do????
What to do? Who can help? Where to go? - British Liver Trust
What to do? Who can help? Where to go?
Hi and welcome to our forum,
It mist be an extremely difficult time for you both.
Are you able to request another urgent telephone appointment with the consultant and list your concerns, especially the weight loss. Sometimes people call the consultant's medical secretary directly to organise this.
If you would like a general chat our nurse led helpline is open Mon to Friday 10am to 3pm on 0800 652 7330
Best wishes.
He did ring the consultant and we are waiting and waiting and waiting to hear back!! We do plan to call your helpline on Monday - thank god for it - it's SO hard to get to speak to anyone in the know. Thanks for your reply
Hi there 🙂
Personally, I think definitely ring the secreatary again perhaps ask if he can have routine blood tests, if not already being done.
Has the Dietician/Nutritionist ever mentioned 'Fortisp's? You might want to add that as a question too. They are supplement drinks, with or without a meal (they're nice too, different flavours to choose from ) 😊 they are good to have incase the eating is not 100% and good for weight gain. Definitely check with your consultant that they would be suitable for him.
I'm sure some other peeps will be along soon to offer advice or share similar situations, or suggest other ideas that may help.
Whatever you do, do not give up. He sounds like he is determined with the drinking, that's one box ticked. Well done that lad! You also for your support, that is really important. Look after yourself also.
You haven't mentioned any other symptoms so I'm not sure what else to say, apart from keep going, ring the secretary, ring the helpline on Monday they are brilliant.
Take good care
😊
Thankyou!!! I think drink supplements are a good idea and will look into it. We'll definitely ring the helpline. We need to know that things can improve because the present is so grizzly. He is getting so miserable being ill all the time that he is starting to lose faith and give up and that must not happen! I'd love to hear some success stories from people who have end stage liver disease. My partner is only 40 - there must be hope!
Aww, you hang in there. It's a bit of a long road , but determination and staying strong is essential.
I am a success story, although others might differ 😂, I was en route for transplant, but somehow got to the stage of going up the ladder rather than down, hypothetically speaking.
It IS horrible, I can tuly empathise.💕
Just knowing that others had the same problem, the same reason for the decompenated liver -ARLD. It was so helpful just to talk, the support I had and have was and is still terrific, I think that has a lot to do with staying positive. So keep at it. Day by day.
Tell him it's ok to get fed up, but he's got to smile and laugh at something everyday. My prescription of laughter, music and doing a little mad dance - even if it's in bed.. is free.
Try not to panic, he has got this far. I'm sure he can get further and is young.
As you are fully aware, the body is an amazing thing, the liver is super human. It's like it's own, lttle person 🕴~ It gets cheesed off and reluctant to be friendly again. I managed to coax mine back to compensated, so it likes me a bit now and is playing ball.
I'm only saying this in a kind of funny way, to make you smile and this is only my personal experience. It would be wrong of me to say all will be the same for your partner. But don't EVER give up and keep asking the questions. It's not an easy road, but there is likely to be light at the end of the tunnel, the human one, not the Starwars type.
Warm wishes xx
😊
Your advice is brilliant. I am increasingly suspicious that my partner has not received advice or follow up because he is alcoholic. He was discharged from hospital without any dietary advice and has been left alone to cope. There was no effort to work with treatment agencies. I felt so sorry for some of the other alcoholic patients in his ward, some of whom were living in sheltered housing with no support from family or friends. The staff fully expected him to go back to drinking and be back in hospital very fast. I know this will be based on their experience of treating alcoholics, but they should give people the best chance and not write them off. He had to be nearly dead before they would admit him to hospital. He was calling the Samaritans, the ambulance service, constantly seeing his GP and no one would help until jaundice set in. I reckon there's a policy in place that treats alcoholics with liver disease differently to people who have this disease for other reasons. It make me mad!
This past years has been difficult for getting any sort of follow up from doctors - regardless of cause of liver disease. My hubby hasn't had a consultation since January 2020 although he's had his scans and an annual endoscopy but no discussions with a doctor and I can't seem to contact his consultant either - emails are bouncing back.
Learn as much as you can about the condition and in this way you can ask the appropriate questions. We've found out you really need to push for the support you need - chase up appointments etc. The BLT has a page about the patient charter which details the minimum care standards someone should receive plus has good questions to ask.
britishlivertrust.org.uk/li...
In the 9 years of membership of the forum i've got to say that folks with alcohol related liver disease don't get a lesser standard of care - especially when they have proven their willingness to make lifestyle changes. Up until recently the highest percentage of folks getting a liver transplant were those with alcohol related liver disease so far from being abandoned the medical profession goes the whole hog for them. Maybe your partner has just gone a little through the cracks with the difficult situation with covid just now.
The BLT has a gold mine of information which can help with self care which is obviously essential between hospital visits.
britishlivertrust.org.uk/in...
britishlivertrust.org.uk/in...
britishlivertrust.org.uk/in...
Katie
I hear you Katie. Thanks
Though I have to say the difficulty we had in getting him treated was immense. The blood tests he had through his GP showed the dangerous effects alcohol was having on his liver and they did nothing about it and didn't investigate further - only did very general blood tests. He was pleading with his GP to get help and they did nothing. There was no joined up working with Alcohol Services and GPs had very little knowledge about alcoholism and addition. He called for an ambulance once and they came and explained that until he was dying they could not admit him. He had to get to the bitter end before the medical services took any notice and that was ugly - he was hallucinating, yellow with jaundice and advised not to stop drinking because that would kill him. Totally stuck. There was a definite prejudice. In a way it's understandable and he probably wouldn't have stopped drinking until he'd got to the bitter end, but I feel he should have been made properly aware of the state of his liver at an earlier stage. The amount of contact he was having with his GP before emergency hospital admission would have made this easy.
Great advice as usual Katie, your comment about emails bouncing.
My hospital advised me when I tried to contact a consultant was that they had blocked contact from emails and weren't allowed to reply,
Because of security
🙁
I do agree with Katie that it is a very tricky time for everyone and also that "folks with alcohol related liver disease don't get a lesser standard of care - especially when they have proven their willingness to make lifestyle changes" is very true. Their own personal opinion should not come into it, but who knows what is said behind closed doors. I was amazed they even thought to suggest a transplant for myself. I felt I was not worthy. Obviously this is not the case, but it used to be at least 6 months being abstinent before they would consider this. It may have changed, I'm not sure. As I previously wrote, I did not have the transplant. It's a long story 😊
Stay poz and each day at a time.
Katie's British Liver Trust links are always super helpful and keep reading them.
Stay safe, keep at it. Remember to beatheee. That's always very helpful 🤭
Our local hospital will offer you a face to face appointment if you feel you need one! I think most others will do the same! We also have the option of video appointments which are better than a call! Are bloods being done regularly and medications being reviewed? Although you have said the nutrition advice was poor, have they prescribed high protein drinks etc!
I think you should speak to the Hepatology department and see how they can better support him/you🙏
As someone who has just spent one month in hospital, I can categorically state that all types of liver problems are treated equally & without prejudice . I have an autoimmune disease, but saw others on the ward for alcohol related issues, as well as other things.
Since Covid is the number one priority, all of us on admission were in a position of desperately needing help. Many patients were having issues with their transplants fir instance. Surgeries are minimal & there is a huge backlog of cases in all departments.
While Covid is still around, you will be his best carer. I would not personally recommend hospital admission in the current climate. I personally would ask your GP if they can get you a community nurse referral, they can co- ordinate a lot of things for you. If you think your partner is losing hope now, in hospital this will only happen faster, especially as you cannot visit & support him other than by video calls. I think community nurse intervention is your best option at the moment. Good luck
I hear you. Thanks for your advice. I'll get him to ask his GP about a Community Nurse referral - it's never been mentioned as an option. He is getting so frustrated now that he is being vile. Not sure how long I can stand it tbh!
I wish someone had told me about community nurse before. I got referral through hospital, but had to be very insistent. Don't honestly know how easy it will be for you to get referral through GP, but be insistent. I'm afraid I can't comment on how to deal with your partner's behaviour, but there are many others who could advise. Look after yourself & good luck.
Our dietician advised a low salt high protein diet, and prescribed protein shakes ,and advised high protein snacks between meals , can you not see another dietician , got to be honest they have been great for us and through covid have regularly made contact by phone
I echo what everyone has said. I was decompensated this time last year with 10 litres of ascites drained! I know I caught mine in time,I’m 4st heavier (muscle) and no fluid. It took me 6 months of working out everyday,great balanced diet,i got no advise l,I just research everything. I used to email my consultant if I had any questions and I always ask for my scan results to be emailed to me,cause in my case different scans show different things. I question everything! I phoned everyday for a week once to get a scan result so I could be prepared for a doctors call cause they have no time and rush through it!! Just take control,don’t worry about being a pest,I dont(within reasonable limits) good for you,never give up!!!💪💪💪💪
We asked hubby's GP to prescribe meal replacement drinks to help with his weight loss. She referred him to a dietician and hubby was put on Aymes meal replacement shakes 5/1/2021. I have also signed hubby up to the NHS My Medical Record website. On there we can view his test results and letters that are sent to him. It is also connected to Hepatology Department. Sometimes appts and test results arrive online before we get the letters at home. There is also a section to add your medication and your measurements, which you can update whenever you like
I'm so sorry to hear about you and your partner's struggles. What medication is your partner on, if you don't mind me asking? Have you tried protein drinks like Complan while you wait for support? Your partner will be needing quite a bit of protein, as he's probably losing muscle mass, although without a dietician's advice it's very difficult to know what will be safe for him to eat. High energy drinks (not the ones from high street stores) are what's usually provided by NHS dieticians. Wising you all the best. Hang on in there.
Thanks for that. He's on Carvedilol, Spironolactone, vitamin B complex - strong , thiamine and now - thanks to BLT advice is taking his Creon and Lactulose again which I think is really helping. GP won't prescribe protein drinks till the dietician asks for it. I've noticed a real improvement in his mood since he started taking his Creon and Lactulose again. All thanks to the brilliant advice given by the helpline!
Thanks so much to everyone who has responded and given advice, We phoned the BLT Helpline and with your advice and the Helpline, I think it's making a real difference! He's started taking the Creon again which he stopped because it made him bloated and feel ill but so far no ill effects. Also he's back on Lactulose which he thought was for constipation and didn't realise kit was for his Hepatic Encephalopathy. I am already seeing an improvement mentally. I am SO glad I joined this forum and called the Helpline. There is now a new burst of positivity and I don't think it would have happened without the BLT. Thank you everyone!
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