Hi I need some advice please. My husband has alcohol related liver disease and fibrosis. I have noticed that the skin round his eyes and the corners of the eyes are yellow. He has also now said he is struggling to walk as it’s hurting everywhere and he said he lost control of his bowels this morning, should I call an ambulance!? I don’t know what to do!!!
Jaundice: Hi I need some advice please... - British Liver Trust
Jaundice
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Kayanne1980
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I think i'd ring NHS 111 for starters but wouldn't rule out phoning for an ambulance. He's obviously struggling if he can't walk today, is yellowing and has loss of bowel control.
Katie
Thank you he just wants to sleep all the time and can’t even shower I’m so scared and confused. I may just ring 111 and see what they say.
I would definitely do that, it sounds like he needs to be in hospital.
Hi Kayanne1980, please seek medical attention so your husband can be assessed. He may be very unwell. Warmest wishes and please take care,Trust10
I ignored those kind of symptoms and I was very unwell. I didn’t do myself any favours and was told off by the consultant for leaving it too long. I’d ring for an ambulance personally. They can do an assessment and advise. It could be serious and it isn’t going to get better on its own. If you don’t want to get an ambulance then go to A&E. It’s safer than leaving it.
Hi called 111 and the on call GP is going to call in 2 hours if he gets worse I’ll ring for an ambulance. Thanks for all the support
Good, glad you rang. He’s probably picked up an infection which is setting his liver off so needs treatment to get it sorted. Keep us posted.
Ambulance has been called through the out of call GP
I thought that may happen. Keep us posted. Try not to worry too much. The hospital will get him stable. Best place for him to be.
I’m scared the jaundice means he now has cirrhosis that’s what is making me very nervous
Hospital will get him stabilized, even if it has progressed to cirrhosis it still isn't the end of the road and even early cirrhosis is deemed reversible.
It is certainly possible for a cirrhotic liver to get into a stable condition with few symptoms BUT at the moment you don't yet know that is the situation but he's obviously a bit poorly at the moment.
Has he stopped drinking following his diagnosis or continued to do so? Sadly, progression is almost inevitable if he continued to drink. Complete cessation is the only way his liver can recover to any degree.
Hopefully hospital will address his issues before he is allowed home again.
All the best,
Katie
He is waiting for a place in rehab to get dry that’s been going on for months. The liver consultant and recovery said if he stops drinking he will have a seizure or heart attack. He has cut down from a litre of vodka a day to 1.5 bottles of wine a day so yes he is still drinking only as his body can’t cope as he is so o et drinking also. We still waiting for the ambulance. I hope they don’t just bloods and say he can go home!
I just re-read your earlier posts and see that you've been on this merry go round before.
Is your husband ok with the idea of going to hospital? You have to get him to stress how poorly he feels and the help he needs urgently. You can't be having him incontinent yet unable to shower himself and being so poorly, there is little you can do for him at home.
There is a lady on here called Shilpa who has been doing this 'dance' with emergency admissions for her hubby repeated over the past year and he has now ended up being admitted to one of the major centre's in London with transplant being rather urgently needed but hubby too poorly for one because they've messed about at local hospital for too long.
Push, push, push for hubby to get the care he urgently needs, you need a confirmation of his diagnosis, he needs to get detoxed safely and then you can see where you go from there.
Katie
It’s been a mess! They keep saying don’t stop drinking but then he drinks and it’s worse I don’t know what to believe! I don’t want him out of there today until he is admitted and we know what the hell is going on. I know what they like, take bloods, LFTS are raised they think well he has liver disease ok you can go home and see the gp in the morning, what a waste of time! He had a biopsy which showed fibrosis and that’s all we know nothing more it’s ridiculous!
He needs to be admitted and safely medically detoxed and then you can start addressing the actual diagnosis and longer term treatment. If he wants this then maybe he needs to start begging not to be discharged till they actually treat him or this cycle is just going to keep going on until his liver is so badly damaged it'll get to real crisis level.
He has just left in the ambulance and I can’t stop crying I feel helpless. The paramedics said it’s part of the liver failing when you get jaundice, great! Will he even make it through the night!?!? They won’t detox him in the hospital we have asked for that and they referred us to the recovery team to get rehabilitation for him.
If they are going to keep him in then they'll need to help with his alcohol withdrawal whilst an inpatient.
Hopefully they are going to treat him this time, he is off to the right place. Don't let your anxiety kick in. Don't panic that he might not last the night - from what you've described whilst he is poorly he's not necessarily showing signs of serious decompensated liver disease. They should do everything they can now to stablize him.
(My hubby went into hospital April 2012 with a massive bleed from varices and eventual diagnosis of decompensated auto immune cirrhosis - all these years later he's stable, cycling most days and doing ok - cirrhosis isn't necessarily a death sentence).
Katie
Thank you you have calmed me down, I just want him back to how he was seeing him like this makes me heart sore. I may just ring the recovery tomorrow and tell them what’s happening to maybe speed the process up of getting him into rehab maybe a little quicker. I’ll keep you piaster whether they admit him or not. Thanks again
Katie as always is right. He’s not going to be allowed to drink in hospital so they’ll have to detox him! He then really must stop drinking after that. I have cirrhosis, diagnosed March 2021. I haven’t touched a drop since I was admitted and I wouldn’t know there was anything wrong now. In fact I feel better than I have for a long time. So provided he follows the doctors advice and eats properly he’s every chance of a very good quality of life. Stopping the alcohol intake is the key.
But that’s what I’m saying I have been here before with him bar the yellow skin and eyes, they just do bloods and say see your gp they do give Librium while he is in Resus but then when he comes home he starts drinking again as they told him he can’t stop as he will have a seizure or heart attack and the. Back to square one as we waiting for a place in rehab.
Has he actually got a liver specialist consultant and if so are they at the same hospital to which he's been taken? His consultant needs to be informed urgently of his up to date symptoms - he/you cant go on like this.
Yes but after the biopsy we never heard from him again. He made the diagnosis and then that was it. The only people we hear from is the recovery team. I may see if I can get in touch with his secretary and ask if I can speak with him because as you say we can’t continue like this
You absolutely need his consultant involved in this. I have both contact details for my hubbies consultants and IF he ever has any issues I know I can contact them straight away.
Every day your hubby is still drinking without that detox in place his liver is going to be getting worse and now he has these more obvious symptoms his consultant needs to be contacted.
I will do yes thanks. I will email the recovery people and the Professors secretary now.
Absolutely agree with Katie. I suspect he isn’t actually getting admitted into hospital just passing through the emergency assessment process. Once he is admitted onto a ward then they will have to detox him. With the symptoms you describe he is likely to pass the threshold for admission. If in the unlikely event he’s sent home then I would be on the phone to the consultants secretary first thing. If he’s admitted then insist on speaking with the senior nurse on the ward and make sure his consultant is informed by the ward and by ringing through to the secretary yourself as well. Detox is essential here.
Ive just spoken to him and they have taken bloods and in a bed they don’t even know what he is there for it’s just a total MESS!!!! i know the unit in emergency he is in so trying to speak to the nurse in charge to ask why on earth is going on BUT they not answering.
Let them get the blood test results which will then determine next steps. The communication between out of hours and emergency assessment isn’t always as good as it should be. If he’s yellow his bilirubin will be raised and who knows what else is going on. Try not to worry and let his care progress before you get too despairing. Unfortunately emergency facilities like this on a Sunday evening look like chaos, but it’s amazing how well they are functioning actually. It’s deceptive.
Part of me hopes his bloods are extremely bad so they keep him in, is that bad of me? I just want him better and normal. I just hope they give him meds whilst in there waiting for results as he will start shaking and sweating as his last drink was at 5pm
No, very understandable. Keep us posted.
Hi Kayanne, it's probably a good thing if they see him shaking and sweating as they'll have to do something about it. If his bloods are not that bad they will most likely let him go home with the advice to reduce drinking gradually. If his blood are very bad they'll admit him to hospital for emergency alcohol detox.
Your husband is poorly and it's natural you to want him to be in hospital and looked after.
It will take some time for him to feel better - it's a long process and it can only happen if he stops drinking.
UPDATE - they have given antibiotics, Librium to stop the shakes and sweating, anti-sickness, parabex and pain killers as he has all over bone pain and not mobile. They want to do a liver scan and drain the fluid from his abdomen, I doubt he will be coming home tonight.
Thank goodness they are actually instigating treatment. You try and relax tonight, he's in the best place and they are obviously going to start dealing with the symptoms he's showing.
Best wishes,
Katie
Thank you
Keep us posted on his progress. He sounds like he’s getting good care this time. Make sure you get some rest and some food. It’s important you look after yourself too. It’s a stressful time.
That's good, he is in safe hands now.
When my husband was hospitalised for emergency alcohol detox they kept him there for two weeks. He wanted to self-discharge from hospital a couple of times, luckily he changed his mind and stayed. I'm not sure if it was the medication he was given, but he was very unreasonable and difficult (I wonder how they didn't kick him out from hospital!)
When he was discharged he felt and looked worse than before the detox, it took weeks to see some improvement. It was very stressful time.
You are probably very worried but as Katie said, try and relax tonight as he is where he should be.
Hi Kayanne1980 - if you want to talk it over with one of us, our nurse led helpline is open from 10am to 3pm on 0800 652 7330. Thanks for keeping us posted, Trust10.
Thank you means a lot!
Update- saw my husband in hospital last night, he looks ok but doesn’t talk much, spoke to the nurse and they think he has a probable case of sepsis. He is being treated with iv fluids, antibiotics and ofcourse detox medication. He is having an abdominal scan hopefully today. Not sure about the sepsis part as personally I think this is all liver issues.
Thanks for the update, I was wondering how he was getting on. The sepsis and the liver stuff are all tied up together. I had sepsis, it was the first time I’d had liver disease diagnosed. Had no idea before I was admitted to hospital very unwell. The liver has many functions but keeping infection away is an important one. So anyone with liver disease is prone to infections which in turn trigger the liver into overload. An infection is too much for the liver to cope with along with all the other jobs it usually performs and starts to deteriorate as a result. Hence the jaundice and ascites. Once they got my infection under control with antibiotics I started to get better. Although I was very sick for a while. So don’t expect him to improve dramatically for a few days. It’s great he’s now getting detoxed though. It’s important once he’s discharged he doesn’t drink anymore. Or otherwise he’ll be back in the same boat again. Make sure they’ve informed his consultant that he’s been admitted so that they are aware and are inputting into his care. Keep us updated and remember to look after yourself too. Plenty of sleep if you can and hot meals. Not just hospital sandwiches...yuk!
Thank you. He just seems so like can’t be bothered and ill it’s quite upsetting. Apparently his bloods were off the scale in A&E so they saying probable sepsis so it’s not confirmed its 100% sepsis. He has an abdominal ultrasound today. They tried to drain fluid from the tummy but there wasn’t any
He is probably very tired and on medications to control alcohol withdrawal symptoms. During his detox my husband was 'detached', unreasonable, rude... It was very upsetting and stressful, and in his case things got worse before he was stabilised. Once he was stable, it took weeks and months to show some improvement.I hope they can figure out soon exactly what is going on with your husband, keep us posted!
Update just spoken to the on call DR. Hubby’s kidneys are shot they trying to find out why and he is on iv again etc no sepsis as stopped antibiotics God knows if my husband will survive this!
Hiya. I've just been catching up & read your posts. I was admitted as a 999 in Oct20 following a serious GI bleed. I'd been trying home Detox but it went badly. Your hubby is in the right place & they'll hopefully stabilise him properly. Does he realise how serious this is? You sound like you're really doing a great job of looking out for him. Hopefully any physical damage caused through alcohol can now be monitored & followed up with proper ongoing support. I'm very lucky to have pulled through & I was terrified at what happened. I'm hoping this will be his big wake-up call & that he will realise that alcohol is proper poison for some of us! He should start to feel better once his body is detoxed. Keep us posted & look after yourself as well x
Well he’s getting detoxed which can only be a good thing. No alcohol in his system will start to help his body recover. Keep us posted on his progress. Make sure you take time for yourself too.
Thank you all. I’m seeing him tonight again as he doesn’t want anyone else to shower him lol. It is only a good thing just heartbreaking seeing him not being able to walk properly etc but I have to be mindful why he is there
The consultant had said kidneys are working at 26% too much bilirubin and toxins they said they don’t think he will make it through
I've been there kay...and they pump you full of albumin it helps the liver and kidneys but you have to slowly hydrate through another drip. I pulled through from liver and kidney failure and also had sepsis (fluid infection) like your husband is are in the right place. Now his kidneys are working. Good luck 🤞 I know exactly how you feel..... sending you some love 💌❤️Danny x
Thanks Danny x
Have they mentioned putting him dialysis or anything to try and help support the kidneys? I do hope they can get him stabilized and he can rally.
Best wishes,
Katie x
They giving him Albumin For the liver to try and kick start the liver to filter and hopefully have an impact on the kidneys. They said currently he is too weak for dialysis sadly
Sorry to hear that. Such a pity they never followed him up after his earlier hospitalizations or gave him the help to detox and get off the drink.
Here's hoping they can stablize him and get him a little more healthy.
You take care of yourself in all this too - it's a very stressful time for you so you need to take care of yourself physically and mentally as well.
Katie
I’m totally dumb if I’m honest had to leave work as he rung me saying they don’t think I’m going to pull through. Lost my appetite and just crying all the time thinking he is never going to come home.
Hi Kayanne, I'm sorry things are so serious. But I'm hoping the fact he can call you and speak to you means it might not be that bad? When my husband was at hospital, most of the time he was struggling to hold his phone and to speak. Let's hope they can stabilise him soon
IF he wants to , he can pull through this if he is willing to fight for it. IT won't be easy, there will be days when he will think he can't continue fighting etc, but he needs to push through that.
When I was admitted I had Hepatorenal syndrome, which is a life threatening kidney issue in its own right, with a mortality rate of >50%(got it twice more during my stay - which was 2 months), and my liver was basically on vacation doing nothing. Only one of the doctors had ever seen anyone pull through with a bilirubin level as high as mine, the next was 50% lower than what mine was. I was told I had 5% chance to live - yet here I still am 2 years later and you wouldn't know I had anything wrong with me unless I told you. But IT IS NOT EASY so he needs to be ready for the fight , be positive and do everything they tell him.
So strong! I’m so pleased to read that. He is a fighter and I’ll fight with him
Here, here Ubwa. We have both pulled through this Kay, like Ubwa has said "he has to be a fighter" I mean shout at the liver and say "you are not beating me" crazy but it worked for me!Well said old boy, hope you are ok!!!
Stay strong Kay and it will help with your hubby!
Danny x
I’m sorry to read your update. Hopefully they can get him stabilised and strong enough to come through the other side. You must look after yourself at the moment. Incredibly stressful but do try to eat. Even if it’s a bowl of soup or something it will help. Thoughts are with you.
Sorry Kay I've written higher up before reading further down about the albumin. Once he gets plenty (I had 6 one after another) of albumin, he will start to improve... good luck, I'm rooting for you 💌❤️Danny x
He is having staggered 3 in a bag via IV
Thinking of you and your husband. Take care of yourself too. Praying he stabilizes and gets better soon
I’m so distraught is it the toxins in the brain that make him slur, he sounds and looks wired or is it the Librium they giving him?
Could be both- I managed to detox without drugs, so can’t speak as to how they make you feel- but anecdotally from others in rehab the drugs did space them out.
The nurse said that they have had good results with albumin for cases like his and they hoping this helps I’m praying that this will help him as after this I don’t think there is anything left
Don't worry please.....With the medication going through him plus HE will make him slur, which he will be treated with (lactulose and rifleximin) after or maybe now. Keep him in a strong, optimistic mood...it works 😏 x
Hubby still the same. Feet are so swollen and the belly. Speaking to the Dr tomorrow as they talking to him but he is a little slow right now so I want an update tomorrow whether this albumin is working or not! How long does it take for albumin to have any effect????
Update. Hubby’s kidneys have improved slightly, he is now off albumin and on phosphate and sodium chloride. He is very weak, ears have become a normal colour again. Spoke to the Dr yesterday and she said that things are going in the right direction after these bloods tonight they will know what way to go next and see how the kidneys cope. He has massive HE and trying to get him to take the lactulose but he refuses.
Morning Kay ☀️. Things are looking a little brighter.... that is great news because the only way is up. If they have stopped the albumin, (in my case) his kidneys should be on the mend.(I can tell you a couple of light hearted stories from when I had kidney failure, it's only if you need cheering up.)
Stay strong all the best....
Danny x
Yes please tell me! I am on tender hooks as I’m calling the consultant for an update in about 25 minutes
While I was being pump full of albumin the canular must of slipped out of my vien. I was already on pain relief and didn't notice my arm (near my wrist) was swelling up. I had a massive balloon under my skin....whoooop 😃💯👍. Then after sorting out everything and taking more pain killers the guy across from me shouted "is the ass working"0 I went " you what" he replied "has she given you enough ass" I said "she hasn't started mate, what are you on about" he then shouted ass you know Haas, Haas it's what you are getting on your drip, albumin it's called Haas"! "Ow righto Haas is albumin" 🤣🤣(I suppose you had to be there). 2 guys shouting ass all afternoon and I couldn't talk right (HE) with kidney failure...... I'm sure the few smile's helped my recovery.....🤣🤣🤣
Made me smile no doubt. These wards don’t answer and now my stomach is churning and hubby isint answering the phone
So hubby’s kidney function improved and he was medically discharged for rehab tonight, bloods were drawn and the kidneys have gone back to the same as what they were when he was admitted! Can you really survive cirrhosis and kidney failure twice and still live, I don’t know what to do anymore!
Hi Kay...damn right you can because I did. Ok I eventually had a transplant (the only cure for me) and the answer is yes you can but you have to follow all the advice from the specialist's and consultants. Stick to the diet advised and never drink again. Depending on what stage of Cirrhosis he has he could live a normal life. All the best.....
Danny x
He is still in hospital right now it’s so disappointing for us both. What happens if after this 2nd treatment they fail again maybe then he can be put in the transplant list
Hi all - just an update sadly its a sad one, hubby has been in hospital a month today, renal failure three times and the liver is failing more, the treatment with albumin and some other new IV meds is not working either so....hubby is coming home and going on Palliative care, such a sad story but they say it could be quick so he is being fast tracked and the hospital bed etc is coming tomorrow, cant believe this is happening to me or him its the worst thing I have ever gone through 😢
So sorry to hear that Kayanne, make the most of the time you have left together and look after yourself too because there will no doubt be difficult days ahead.
Take care, sending much love your way.
Katie
Thank you I am trying to come to terms with it all let alone imagining him passing away, this is so difficult, I never want to remember these times again I just want to remember him the way he was like maybe 2 years ago when we were happy and on holiday like it was only me and him in the world, awful time, he is still fighting but the worst was when he told me 'Im sorry', tore my heart out
It is such a shame that his relationship with alcohol has come to this and especially that he has realised so late the damage it was doing to him and to your life together.
It's heart breaking that so many of you wonderful partners go through this agony with loved ones.
My thoughts are with you both.
Katie
❣️
Thank you for your kind words, I just wish he would have listened, am I angry yes probably to an extent but that is the past I have to focus on the time I have left with him and make some memories to be cherished forever in this home. I will update in the coming days
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