My husband went to hospital in Jan and was given ascitic drain, they drained 7 5 litres ans he lost 10kg overnight, they told us he had liver failure, this was genuinely the first we knew. He gave up drinking immediately and we thought he'd improve but...... in reality he has been in bed ever since! He has possibly a couple of hours out of bed when arranging medical appts or possibly go downstairs for an hour, but struggles with stairs and shuffles instead of walks. He gets so cold if he goes outside he shivers unbelievably. He suffers really bad episodes were it's as though he is really physically paralysed but knows and is so very confused, no control over bladder, he doesn't eat just fresubin drinks, it's so scary. Some days I think he'll never get any better and he's just slipping away from me. He's had fibroscan, ct brain scan,Dean scan but we have not had results yet, his last appt with consultant was cancelled his next one is in May, sorry for the longwinded post but I am so very scared and just wondered if anyone has been through the same, I'm sure they have, how do you get through it? X
New to group need help I'm so Scared - British Liver Trust
New to group need help I'm so Scared
What was his drinking like generally?
He would go to the pub after work in the afternoons (every day) and have about 6/8 pints of carling and then come and have another 6/ 8 cans of carling a day. Always drank Carling no other drink.
Hi. Sorry my reply disappeared so I'm re-typing it.
If it were me, I would either get your husband a GP appointment ASAP or the GP comes to you.
Or ring 111 tonight and get advice on this. You sound like you are very worried. I would be too. 111 are EXTREMELY helpful.
Ring tonight. When in doubt seek advice. Or option 2 ring gp in the morning. I'd ring 111 tonight. As you are worrying.
I went from similar to.your husband in August 2021. There were extenuating circumstances. I think your husband may possibly have hepatic encephalopathy which I had. I'm not a GP however OK. If he seems confused ring 111.
I went from decompensated cihrossis to compensated. I gave up booze completely. So there is HOPE.
I don't think I have been of any help whatsoever. My motto is, WHEN IN DOUBT SHOUT OUT.
Sorry if I haven't helped. Best wishes Golly.
I'm here if you need any advice. I've been through a similar ish experience. I had Covid so no-one is sure if Covid played a part. I was a big drinker unfortunately. I was 58 in 2021. I'm now 60. Female.
Hello there,123.Yes I've been there, having ascites was one of my first symptoms of liver failure.....I had several paracentesis done, at my most i think they drained 12 or 13 litres.
Your husband will be very weak,I was also.....it takes along time for things to improve, im afraid.
You must well be feeling scared, but things can and do improve.......but it takes time. I'm just over 4 years on from my cirrhosis diagnosis.
It took a long time for our livers to reach liver failure, it takes along time for it to try and become compensated again.....good nutrition is vital, I can remember my liver nurse saying that to myself. I was given ensure plus shakes,to help with protein, calories intake, as I had no muscle left.
Excellent no alcohol.....thats a great start.....most important one. I was the same as your husband.
Waiting for results, thats the terrible part......join the club......as im also waiting,,,,im on phone tomorrow to my hepatologist consultant's secretary.....if you have the consultants secretary's number, they can be really helpful.
Questions......ask away ,some one will always help you out.....from all different perspectives.
What I've done love is follow to the letter,what my consultants, liver nurse, gp have asked of me.....made it to every appointment etc..
Maybe give the excellent blt nurses a call tomorrow.....there so helpful, reassuring, help with any questions you may have....just an idea.
Try not to let it get on top of you,although I know easier said than done
Anyway welcome love.
My best. Chris
Thank you so, so much Chris, you and Golly123 have already helped more than you will know just by understanding exactly how we feel, knowing that people have been through this and are positive makes me feel hopeful. I wasn't earlier. What do say to consultant secretary? Can I ask for test results? I did email her saying exactly what I've put here but got no response, they're so busy I don't want to pester them. We have appt on 3rd May just pray the don't cancel again I don't think I could cope. Just hanging on till then x
Your welcome love.Yes,if you have a number for the secretary of your consultant, I always found phoning was best.....mine is lovely, she tries her utmost to move things along.....as she realises we all worry. Usually if results have come onto the system, she will then get my liver nurse to call me,who is equally lovely and so helpful. But 3rd May isn't to far off,but if you have serious concerns then please contact 111. I know what your saying about pestering them,but we just want to know what is going on. Test results have to be interpreted correctly, by your own medical team, I couldn't do my own,well not at the start of my liver issues.
Yes,we must remain positive,as must your husband....thats equally as important,life isn't over,but needs time to adjust itself, but there are many on this great blt forum....myself included who have improved tremendous, from what looked like not a positive outcome.....but we are here......
There certainly are ups and downs, but we have to crack on with life.
I wish you both well.
But I would, if things are on your mind,phone the great blt nurses....great help.
Best wishes. Chris
Thank you I will take your advice and give them a call. Stupid question how do you get a Liver Nurse? Be good to have someone to interpret test results instead of Google! Will try to get positive just have bad days how do I get him to do the nutrition bit he's never been a good eater at the best of times.
As to regards the liver nurse,I was appointed a liver nurse by my gastro consultant....when I was admitted to hospital, .again something to mention to your medical team....alot may not happen until you husband meets his consultant in may,when they have all test results to hand,and that may well be the same regarding your husband being able to see a liver dietician......things should move along after that hopefully!!!.. I would say,to go easy on Google....its a scary minefield. I stick to the nhs and British liver trust websites.....you can trust them.
I would certainly say little and often, regarding food....none of us on the forum are medically qualified, a liver dietician is the one who nows your husbands medical background, so its best for them to decide, as what maybe right for one, may not be right for another....we are each individual.
Have a look on the British liver trust website.....full of great information .
You will over time take in information.....and learn more about it.
I hope your husband improves.
My best.Chris
Thank you so much Golly123. He has these almost every night and then it passes I did ring 111 first time it happened in Feb and they told me to ring 999 The ambulance took us to hospital but 10 hrs wait to see doctor by the time we saw someone he was a lot more with it so they discharged him. I told consultant I thought it was HE (google) but can't ring 999 every night the NHS are maxed out and under so much pressure so at the minute I'm just trying to cope with it! It's heartbreaking. Rang doctors to see if his tests results had come back but they haven't got them must have gone to consultant so just waiting and worrying xxx
I have been where you are and its a dark, scary lonely place. My partner was diagnosed with decompensated cirrhosis on Christmas Day 2021 in hospital due to alcohol. He spent 3 weeks in hospital and I wasn't sure he was going to make it . Since then he hasn't drunk again and slowly but surely (with some blips along the way) started to get I hesitate to say better, maybe stable is the better word. He was listed for transplant after being drink free for 6 months (when my partner was first diagnosed I didn't even know this would be an option) but now is suspended from the list as his bloods continue to improve and he is considered recompensed
It is a very long slow road and it requires you being very pushy, May is way too long to wait, he should be being seen much more regularly, monthly at least at the start I would say. At the start my partner fell through the cracks and wasn't seen for weeks and ended up back in hospital. I would contact the consultant secretary and push for an appointment or failing that, just go to A and E. I would ask for copies of all bloods and learned what to look out for. Is he on any diuretics for fluid? If these are successful it can eliminate the need for a drain, I would also push for a nutritionists appointment. Do you know if he has HE, is he taking lactulose? He needs to be aiming for 2/3 bowel movements a day to eliminate the toxins, build up of toxins can cause HE
Its a lot to take in but you are in the right place. I would also recommend the British Liver Trust nurses helpline, they are very helpful
Take care, you aren't alone and you can ask anything here, its far better than google! x
Hi RshcA friend of ours a nurse, got him checked out in Jan he had hard swollen belly and umbilical hernia and bad walking that's when they gave him the drain and put him on furosemide and spirolactone diuretics and Adcal then let him go home that night. After that he was so weak and then the confusion, well it's more than confusion it is like he is paralysed even his speech goes, and struggles even with knife and fork, he needs help going toilet and with everything when he's like this and it can last a couple of days. First time I rang 999 he had B vets by IV and then home. He is on Rifaximin and Lactulose although HE not clinically diagnosed yet. Like I said we have only consultant since then and only once as his last appt was cancelled. 🤞🤞🤞 this next appt will help us understand more. But this gorum really, really has helped already x
this site really got me out of a hole when my partner was diagnosed - none of the doctors in hospital told me that a person can go from decompensated to compensated - I found out on here. When the doctor told me my partner had cirrhosis (on Christmas Day) all he said to me was he 'has end stage liver disease' and that was that. I didn't know where to turn then I found the British Liver trust and I found some hope.
It does sound like your partner has HE, if he becomes constipated don't wait, just get him to A and E.
If you can get him to eat anything at this stage, when my partner was first diagnosed he was malnourished and we were told that anything (as long as its low salt) was fine, it was calories he needed so we didn't worry if all he wanted to eat was cake, that was what he had. Plenty of time later to worry about a healthy diet, although protein is important so try and include some high protein food and a snack (or even just a protein drink) before bed is important too.
Before the ascitic drain did he have any symptoms or problems, or was it very sudden. Was he very overweight.
He had swollen ankles, shat we thought was a beer belly, umbilical hernia and his walking had got slow but no confusion.
Hi lovely
This was basically me last year. I went into hospital mid December 2021 with tummy pains and was discharged on Xmas Eve with liver failure. Hospital didn't refer me on to anyone but I knew there was a liver nurse so my husband basically trawled the hospital and rang the ward she was based on, begging her to see me. She did and she pretty much saved my life. I was similar, drink problem for years, ascites (drains 11-12 litres), could hardly walk, having 'accidents' etc. I guess gradually as the ascites went down I started to feel better and my appetite came back which was key!! I am on the transplant list now but on an upward trajectory despite everything so who knows.
I know everyone is different but trust me he will turn a corner - I go to the gym every day now!!
Abstinence is absolutely the key, through all this he was likely going through withdrawal symptoms too which, even in isolation, are bloody vile.
I really hope he starts to turn a corner soon xx
Thank you so much. Honestly just knowing people have got through this helps so much x
Dear 123toyouto,
If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
Best wishes
British Liver Trust
Hi, you seem to have been given good advice. Hang in there, it's going to be a bumpy journey but things can improve. My hubbie gave up the drink 14 months ago and now compensated and enjoying the best life he can have with cirrhosis. He had wee accidents, falls, bad sleeping patterns, confusion (confusion and wee accidents turned out to be a bladder infection and not HE) so I moved him to the spare room gave him a bucket to pee in and a plastic sheet. I also took him food even when he didnt want anything, things he could eat easily like custard on icecream or porridge with maple syrup. I saw someone else say worry about the healthy diet later which is a good idea. It's just getting them to eat anything and small amounts of exercise to help stop the muscle wasting. Stay away from salt ( not good for the water retention) He also felt cold all the time, so invested in thermals and that helped. If he likes coffee they recommend that as it helps with liver function. Best to avoid scary google and stick with the liver trust and nhs. You're not alone. X
Thank you so much. The advice and experiences everyone on here provide help us loads xxx so positive can't thank you all enough xxx
Good luck to you both on your journey xxx
Hello,
I too am a worried other half ever since my husband came out of critical care after collapsing in March 2022. The reason for this (he had cirrhosis/ portal vein blood clot/varices) and the diagnosis was a shock to both of us. I try to calm down which is easier said than done so I understand where you're coming from.
The truth is listen to yourself if it's not feeling right ring 111/GP/ or British Liver Trust Nurses (they're wonderful).
On 111 sometimes they can get a Medical professional to call you back and if they think your husband needs a look at theyll send Paramedics. The Paramedics are fantastic and they'll check your husband over and if they think he needs to go to hospital they'll take him. Honestly, I've struggled alone with my husbands illness/symptoms/changes it's all so confusing but reach out to Medical professionals NO ONE will be angry you're seeking advice.
I always think its hard living with someone with cirrhosis and/associated conditions as they're usually under so many different departments in hospital anticoagulant (my husband has a blood clot in his portal vein so had TIPPS procedure) haematology, gastro, diabetic clinic etc that you're not sure who to call, I'm still not, but my husband has been able to deal with 'needing advice' mostly himself.
Please 🙏 ring someone if you're still worried if its out of hours 111 maybe, I've did it about a month ago after hubby had been laid up on sofa for 2 months due to broken knee and he'd lost so much weight and then he'd started to go yellow the day before and was very confused and lethargic I was so worried but the Paramedic who called back was so understanding to my concerns and sent Paramedics out to check on him.
Re Diet: Check about diet and cirrhosis on British Liver Trust site I found it really helpful. Sometimes my husband can't eat anything as he feels sick and he hates the fortisip he has to have, but other days he can eat small meals and little snacks.
I do hope this helps and best of luck. I'm thinking of you.
Ask the doctor about hepatic encephalopathy but first look up hepatic encephalopathy symptoms and see if they match your husbands behaviors. If they do the doctor will give medication to help with this, If he prescribes Lactulose ask the doctor to explain how to titrate Lactulose. Ask about ascites and how often they can drain the fluid from him. You need to start measuring how much your husband is peeing in a day and write the date and amounts down and take this list to the doctor and your doctor will be able to determine if kidney function is affected. Let the doctor know your husband is always cold, this is from the liver issue. Remove all salt from his diet. Try your best to get your husband to eat eggs. The liver creates Albumin which the body needs but a damaged liver can not create it so you must get it from eggs. Ask the doctor is taking Magnesium would help, it usually does because it helps your muscles to not deteriorate. We get magnesium thru our diet but appetite disappears with liver illness. If your appointment is more than a few weeks away you should put him on laxatives which will do the same as Lactulose, keep poisons out of his blood which is what causes the mental confusion. The information I shared is all from personal experience.
Thank you for sharing your experience I really appreciate all your advice and your explanations make it make sense! We see his consultant tomorrow and hopefully have some results back to tell us where we're at. X
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