I’ve posted on here previously and don’t really know what I’m looking for by writing this, maybe just to vent. My partner has been hospitalised with ARLD. I don’t recognise him and I am terrified. He has been unwell for a number of weeks awaiting detox but over the past week his health rapidly declined, bleeding, confused and shaking. Functioning alcoholic for a number of years until the last couple of years where he’s needed to detox. This particular time after showing symptoms we’ve never seen he finally agreed to an ambulance Sunday and by today he has declined massively. I have been told he has hepatic encephalopathy (obvious) which he’s never had and varices. He is 43, has children and a career. I don’t really know how to deal with this. The nurse asked me if it was ok to call me any time of day or night which scared me! The doctor said he is on constant obs and being managed by the critical care team. ICU are aware of him if they need to get involved. He is a shadow of who he usually is and it’s heartbreaking to see. He is extremely confused and not making much sense, very sleepy and jaundiced, can hardly move. Also on oxygen as he’s not maintaining it enough himself. Does anyone have any similar stories? I’m almost on auto pilot and in shock, I also have a 9 month old to look after
Terrified. Partner in ICU with liver f... - British Liver Trust
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My thoughts are with you at this difficult time. There are many stories on here of people who have been right to the edge like your husband and pulled through. Try to build a good relationship with the medical staff seeing to him as this will be a lifeline for you, especially as he starts to recover and begins to take control back of his health.
Make sure you have a proper support system around you - you are facing a difficult journey and need all the love, care and support you can get.
I too have children, but not as young as yours, my heart goes out to you.
Sending lots of love and strength your way, take care
Such a stressful time for you and, indeed, your family. My thoughts are with you all and you must let your feelings out too for the sake of your dear children. It must be difficult to imagine and good outcome for your husband at the moment but, there are many people who have been in the same position as your husband and have pulled through and I sincerely hope he does. Warmest thoughts and big hugs.
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 10am to 3pm on 0800 652 7330 (excluding bank holidays)
British Liver Trust
bless you, its very scary. My partner underwent a medical detox Christmas 2021 - it was horrific. He was in hospital for 3 weeks. The detox takes a huge toll and can cause its own confusion, my partner didn't have HE but was very very confused going through detox. Thankfully my partner has been relatively stable since and is now just about to be listed for transplant. Once alcohol has been stopped the liver can regain some function but it does take some time. This may sound crazy but the hospitalisation was what he needed, I am in hindsight glad it happened, he couldn't carry on as he was and whilst going through Christmas with our teenage daughter with her dad in hospital was the worst time of our lives things are so much better now
I was in a similar situation to your partner...over 3 years ago....i so fully understand you feeling overwhelmed by it all. This forum is great...i see positive 001 has messaged you. Lovely Laura will see you right.... my own experience...i only suffered mild he....was put on thiamine. I had bleeding varices...they had to be banded....i had no muscle, jaundiced...i stopped drinking straight away....being in hospital saved me, as could not drink.....i had terrible ascites....stomach distended....had to have several drains. Fluids and vitamins given via iv line...also albumin, when was having fluid drained. Things can and do improve...but very slowly for me. I gained weight, started a decent diet.....walk a couple of miles a day. Although have fluid gathering in my lower legs....im awaiting a telephone consultation with my consultant . Its a slow process. I have cirrhosis....haven't touched drink in over 3years. I to looked at myself in the hospital mirror, and thought what had become of me....that was a sad day☹....its just things take time..
And every one is different.
I hope this helps love. Thoughts are with you. My best Chris
Thank you so much, and I’m so pleased to hear about your progress. I really want to take a picture of him (not to share with anyone) just so once he’s well he can see what he was like. He said to me recently he never wants me to see him in that sort of state and he’d never do it to me. I appreciate you sharing your experience
Oh poor you. It must be incredibly, incredibly scary. I obviously can’t talk about your partner’s case but as others have said make sure you keep talking to his doctors and don’t be afraid to ask lots of questions. They may not have all the answers just yet but they will be able to guide you on his condition. He sounds quite sick, but the body has a remarkable ability to survive. I can only tell you my story. I was admitted into hospital in March 21 with a deep rooted infection. They diagnosed cirrhosis along with acute on chronic liver failure. The infection had tipped my already damaged liver over the edge and I was in a bad way. I’d drunk too much for a long time, but personal circumstances had heightened my drinking and along with lockdown my drinking had got out of control. I haven’t drunk anything since the day I was admitted - 18 months now. In that time I’ve gone from not being able to walk, being incredibly confused and very sick to being very well, working and running a couple of miles a day. So it is possible to recover. If I’m absolutely honest, I never doubted my ability to get well and I think that saved me. I’ve had to be careful with my diet and eat what my dietician advised. I’m less strict than I was and do have the odd treat, but I do make sure my protein intake is at the right level. Salt and sugar I also keep an eye on. I’ve got used to the diet and the abstinence and I live a normal life. My only real symptom is a bit of tiredness if I’ve overdone things. I make sure I get enough sleep and most days I’m absolutely fine. The liver is a remarkable, regenerative organ and even with a lot of damage it can still perform its 500 jobs. If the thing that’s causing the damage is stopped (and that’s the hard part for someone with ARLD) then who knows how well he can get. My family thought I was going to die in March 21. I’ve just celebrated my second birthday since leaving hospital and that’s incredibly precious for both me and them.
I am so sorry that you are going through this.
My husband was also admitted to hospital through a&e with bleeding varices and spent 11 days in ICU.
It was a very stressful and scary time for all of us and we were also under Covid restrictions which mean’t we couldn’t go in and see him. He had post op delirium also, which was a complete nightmare, so had to have a nurse with him at all times, the conversations we had were very interesting to say the least! He was home after nearly 4 weeks.
He was detoxed, whilst in icu, and hasn’t drunk since.
I know it’s difficult but make sure you are looking after you too through all of this. The staff in the hospital will look after him and they do a fab job.
Thinking of you all xx Take Care x
I am sorry you are going through this. Your partners story sounds very similar to mine. I am also 43. It was a very long road to recovery for me, but I have recovered. It was three months of touch and go hell, followed by home health care and physical therapy. My mental confusion was substantial and scary. The main thing is… he must abstain from alcohol. He will likely die if he does not. The road to recovery is long. My best wishes to you and your family as you deal with this.
I'm sorry I have nothing positive to add but I hope things improve x
Hi all. Overwhelmed by your lovely responses, thank you so much. So they decided to move him to ICU last night because his electrolytes are so low and there is also a concern around his kidneys. Nurse said the main reason he’s there is so they can put an IV in his neck for the fluids as a normal ward can’t do this and also help maintain his oxygen levels. I’ll be visiting later. They said he is stable but restless and keeps trying to get out of bed. The night I wrote this he was so so confused and like an elderly man, it was heartbreaking, the following day he was still extremely weak but only slightly confused so I’m hoping today he’ll be the same. I can’t actually believe my partner is in intensive care, it just seems like something you hear on the tv! I really hope he understands where he is and the seriousness of this. It’s my birthday today too can you believe and my Mum is stuck in Florida because of the hurricane so I have to get my 80 year old Grandad to watch our baby when I visit, what a crazy week!
well love....happy birthday!!. Im sure u are wishing it was a more enjoyable day. Hope your partner is stable when you see them later.
Take care love. Chris
As they say "It never rains but it pours". My heartfelt thoughts and a belated birthday greeting. I'm sure if you had a Birthday Cake you would have blown out all of your candles and made a positive wish. I also hope your Grandma and dearest Grandad are ok. This must be absolutely heart renching for them too. Please take care and sincere wishes for a bright outcome for everyone. x
Love, I really feel for you but you are doing an amazing job. To be going through what you are and looking after a baby at the same time, you’re amazing!!! I hope that your mum manages to get home soon and of course that your partner starts to show signs of improvement. I hope you managed to enjoy your birthday as much as you possibly could under the circumstances. Take care xx
Thank you so much 😊 Fingers crossed Mum is home Saturday morning. I just called the ward and no change but he’s being quite aggressive trying to get out of bed and ripping out all his tubes so they’ll have to do something about that. The nurse said his stats are looking better but won’t be if he keeps doing that
I would like to mention for a moment the lack of support there is out there for those who have experience of Hepatic Encephalopathy, and equally important is the understanding of the condition for those who come into contact with the patient. Carers, Family and friends etc. All need to understand the change in someone’s personality and how certain responses can seem odd and nonsensical at times.
Because of this lack of understanding, many people just assume that the person is just being mean and uncooperative. Those hurtful words and comments have no real meaning. I often think it’s a bit like someone having Tourettes, where the words that are spoken are involuntary. People can’t see the brain damage that's going on.
Sadly, in my opinion, many GPs just don’t understand the severity of the HE condition and merely prescribe the use of lactulose. A recent journal published earlier this year stated that “the clinical evidence behind using lactulose for all severities of hepatic encephalopathy, which is currently considered the standard of care is poor”. So, just because it is a recognised form of treatment for HE, it doesn’t always work for everyone so careful monitoring is required. If need be, Rifaximin may be prescribed.
Sadly, I had only been prescribed lactulose and my brain damage is now permanent.
Many GPs don’t carry out any form of assessment like the “West Haven Score” or an “Animal Name Test”, (like they do over in Europe and the US) or an Animal Name Stroop Test.
Once diagnosed, they should also notify the DVLA and the patient informed not to drive. While it is the responsibility of the driver to notify the DVLA of any changes in their health that may affect their ability to drive safely. It is the GP who has made this diagnosis and also the patient may not be compos mentis enough to do this.
Finally, I would like to point out the need to have certain measures in place. This subject is often hard to discuss or implement, so family members may be able to offer help and support with this one.
Because a person may not be fully compos mentis when having an HE episode, they are no longer thinking or behaving rationally. They cannot make sound decisions, and even become a risk to themselves and others. Here a partner or living carer should seriously consider being made a “Power of Attorney” over a person's medical needs.
There was a sad case on here a few years back now that illustrates the importance of having a Power of Attorney in place.
For this true story, I’ll call this lady Claire, and shall refer to Claire’s husband as “Hubby”. (Hubby was a rather well-known radio DJ from Liverpool).
After several shared private messages, Claire explained how her husband’s liver condition and alcohol abuse had deteriorated to the point that he was now suffering from serious HE issues. She confided in me and told me of her husband and of his real name.
She went on to tell me how the HE had become so bad that they had to split up. Clare had to put both her and her three children's safety first, so Hubby moved out of the family home in Runcorn, Cheshire, while hubby had rented a small flat some miles away.
Clare would often go around and see Hubby from time to time as I think there was still a lot of love there.
Nobody knew of Hubby's alcohol problems as he managed to keep these well hidden. But this story didn’t have a happy ending when Hubby died on the 8th of November 2018. He left behind his wife and three children.
Even now I’m convinced that Hubby could have been saved. While having an HE episode, Hubby suffered a server variceal bleed. Clare happened to be there at the time and had made a 999 call for an ambulance, but sadly due to the HE, Hubby was refusing medical treatment and refused to go to the hospital. In his HE state of mind, he really couldn’t see that anything was wrong. The ambulance crew finally said, “well, we can’t force you to go” and left. Hubby died later that night.
I am convinced, that by refusing medical treatment and knowing that he had an HE condition, it could be construed that he was no longer capable of rational thought. He posed a danger to himself, if not to others. Had Claire had a Power of Attorney in place, the ambulance crew would have taken instruction from her and the crew would have taken him to the hospital where he would have been given all the medical treatment he needed.
There was another similar case just over a year ago, down in Dudley in the West Midlands. This was at the height of the COVID pandemic. This poor lady's husband was having a terrible episode of HE. He too was refusing medical help. Her/his GP was refusing to come out to see him and he was refusing to go to the hospital.
This poor lady telephoned me and explained what had been going on she was in a terrible desperate state and needed help. I in turn sort advice from a Hepatologist friend down in London. He told me to get her GP to agree to a DoLS order (Deprivation of Liberty Safeguards). Sadly, she had trouble getting hold of her doctor, who was still refusing to come out. Her husband died later the following morning.
What was so sad about this case was that this poor man lived just 10 miles away from the Queen Elizabeth Hospital in Birmingham which some of you will know is one of the top liver hospitals in the country.
I’m sorry about the length of this reply, and I hope I’ve not painted such a dark picture. I just wanted to point out the importance of having a Power of Attorney in place. Please try and talk this over with the consultant and other members of the family.
Hope this helps
Hi Richard. Hope you’re well. I’m not sure if you’ve read my recent post about my partner still not being fully ‘awake’. Im assuming this is still HE. As he is in ICU would you think they are prescribing everything they should for his HE? I’ve actually just emailed a top professor at the Royal Free for his opinion and if care can be transferred, I don’t even know if that’s something that happens
There is normally a golden rule within the medical profession for a consultant not to encroach upon another doctor's patient or comment on another doctor's field of expertise. Unless they have been invited to do so, as in giving a second opinion.
However, You could always ask for your partner to be referred to a specialist liver hospital. I happen to know a few specialist liver doctors down at the Royal Free and find them to be excellent, extremely knowledgeable, and more importantly, understanding.
There was an interesting article that was published in the “Journal of Hepatology” back in March. This was written by a senior hepatologist professor at the Royal Free. This does make for some heavy reading and
Time is a good healer. The medication used to treat HE is merely to prevent further damage and to minimise the amount of ammonia being produced. The brain needs time to try and rewire itself.
It’s early days for your partner at this time. Stabilising him is the priority. While he’s in an induced coma, his brain and liver are busy trying to repair themselves. Just hang on in there.
Best wishes to you both.
You being his carer as well as his partner are an unsung hero. You’ve shown so much love, loyalty and commitment. What a wonderful person you are.
Thank you so much, I really do appreciate your informative posts. Ammonia has come down gradually and is now in the 50s. Sodium high. He’s out of the induced coma and has been since last weekend but it’s taking forever for him to wake up fully. Kidneys not deteriorating. Bilirubin slowly coming down. He’s not fully responding to commands and only opens his eyes slightly when you call his name and not all the time. He has been trying to move his arms and legs. A professor at the Royal Free said at this point he doesn’t feel a transfer would be beneficial but I’m glad that at least now the lines of communication are open. Little steps and one day at a time, again, thank you for taking the time to respond
Finally spoke with a consultant today. He said my partner is very sick and has a 1 in 3 chance of survival. This of course floored me. He said his jaundice seems to be getting worse and he’s not excited about that, but that his liver condition hasn’t changed since he was admitted to ICU (as in not got worse) and his kidneys aren’t really a concern. They’ve had to sedate him as he’s become quite agitated at times trying to rip all the tubes out including oxygen and NGT. He squeezed my hand and nodded when I asked if he knows how much I love him, and also answered correctly although very very weakly when the nurse asked him where he was and why. When I said the nurse said he could be off ICU in a few days the consultant said he may be but it’s completely dependent on what his liver does and they don’t know, it’s basically a watch and wait. I’m struggling. And I have to be brave for my 9 month old. This is so surreal
I am so sorry to hear what youre going through and amazed at how strong you are being for your family. I know this doesnt change anything for you but I am sending all the positive vibes I can your way and hoping and praying to the universe your partner starts to get better soon and stabilizes.
Thinking of you and your little one. There's nothing we can say but most of us understand x
He was put in an induced coma this morning because of his breathing and his liver has got worse. I’m begging someone to share a similar story with a good outcome. Please
My ex was put into an induced coma last year. He had pneumonia and his liver and kidneys were failing. It was touch and go. He was 43 at the time. The coma and industrial strength antibiotics allowed his body to recover and he was brought out of the coma after a few weeks. The post coma recovery is tough and brings its own challenges but they've done it to allow your partner the best chance of survival now. Do you have an update?
Same age. The update from the nurse just now is he’s pretty much the same, still on the ventilator and still in the coma. They’ve now given him a little amount of blood pressure medication because it’s slightly low. I’m visiting at 11 and will catch the consultants. It’s killing me because it’s strictly one hour per day visit. If I’m lucky I get a nurse that lets me stay longer but not often. It’s funny how everyone that hasn’t been there is now coming out the woodwork causing untold amounts of stress for me wanting visits and information. But I know my focus is my partner and our son. Thank you for your comment, it’s adding to the hope I’m holding on to
Well love. I really hope your other half shows signs of improving, but as i said, its a long road to recovery ,it really is. Also, i agree duck,you find out who are your true close friends/relatives, in such difficult circumstances . Yes your little one is extremely important....hold them tight love 🙂.im so hoping things improve, when you see your partner, and you can spk with the consultant/doctor,to see where your at. Take care love. My best,Chris
They did mention some aspiration today and he’s on antibiotics for it which online I can see may turn into pneumonia (yes I know I need to step away from Google and I now have!)…They also said kidneys no worse but still a concern because if they do get worse…well I don’t want to finish that sentence
We were told that there would be good days and bad days. They have to turn them every so often and this can impact their recovery but it's vital they do it. Also they have to find the right balance of meds which can take time. I hope they are keeping you updated and that you got to speak to someone when you went in.
It's just one day at a time at the moment, so try not to overthink (and I don't say that lightly, I know how hard it is)
So no change overnight. That’s not good but also definitely not bad as the night before they said he’d deteriorated, but today no worse. They are also trying to gradually decrease his oxygen to see if he can breathe on his own and so far it’s not had a negative impact 👍 I’m all over the place to be honest but you are all really helping, so a big thank you
that's such good news about the Oxygen, take that as a small win. We do go into shock to get through these tough times, you are being so strong and brave. It will probably hit you at some point, be kind to yourself.
Fingers crossed he starts to rally, the whole point of putting him into the coma is to reduce the workload on his body and give him some time to recover without all the body systems competing for assets. I am sure over the years we've had people on here who have gone through the same - certainly some folks who had had massive bleeds or strokes due to their liver disease who have then recovered sufficiently to go on to get transplanted.
Hopefully, your partner will wake from this and be on some sort of road to recovery and will I hope have had enough of a shock to see he can't continue his destructive pattern nor put you and your little one through this.
Of course you are well aware he is very poorly just now, he's walking a tight rope but doctors and nurses are doing their absolute all for him - be reassured on that. This will continue to fight for him and hopefully he'll come through this.
In the meantime whilst he is getting this 100%, round the clock care you need to look after yourself properly and hug your wee one close.
I do hope you get a positive outcome and he can improve and get the wake up call and further medical support he needed.
Best wishes, Katie
This is like reading my husbands story, very similar.
Good news with the oxygen, remember small steps but positive ones nonetheless.
They reduced my husbands ventilation bit by bit, till he was off it completely it did take about a good few days, so don’t expect to much to quickly. He’s in good hands.
I know the emotions, and totally understand what you’re going through.
Hang on in there, be kind to yourself, you’re stronger than you think you are xx sending hugs and strength to you all xx
Take care xx
I have been thinking about you Thisis UsRRR and hoping there has been some improvement.
Thank you so much. It seems things have stabilised. As in no deterioration at the moment. The consultant’s words yesterday were ‘he is by no means out of the woods and critically ill, if things decline there isn’t much we can do.’ And I understand that completely and that is a very real possibility. He also said if anything there are really ‘miniscule improvements’. But I’ll hold on to any positives at the moment
Hi all. I hope everyone is doing ok? They turned off the sedation for my partner a few days ago. But because his liver isn’t working properly it isn’t getting rid of toxins so he’s still completely out of it. He’s not responding to commands, he moves ever so slightly but then goes back into a deep sleep, and now barely moves his eyelids when I call his name. The consultant has told me this is a concern. I’m terrified that he’ll never ‘snap’ out of this state. I just want to tell him I love him and to know that he knows this. He’s still on the ventilator but only 35%. He still has the lung infection which is concerning as the antibiotics for all this time haven’t got rid if it, they’ve sent some secretions away to be retested. His bilirubin drops daily but obviously it’s still sky high. His kidneys have been holding up until this morning when they declined ever so slightly, if they continue to by the morning this means dialysis and I was told last week once the kidneys start to go then there’s not much they can do, as in they can’t take care of both the kidneys AND the liver. She’s basically said all of this is a ‘watch and wait’ scenario and they just don’t know
No significant changes. The microbiologist has prescribed a new antibiotic because the 3 he’s already on aren’t shifting the lung infection. His ventilator settings are coming down. His bilirubin is coming down in tiny amounts and his kidneys are ‘holding on’. The worry is the fact he hasn’t woken up properly since the sedation for the induced coma was switched off at the weekend. He isn’t communicating, his eyes barely open and he’s not responding to commands, he is now moving his arms and legs like he wants to get up but that’s only a few seconds at a time. Is this normal for the stage he is at? I just want him to know I’m there and to look at me. A consultant said the longer patients are in with no significant change isn’t a good sign…
it does sound like things are slowly going in the right direction. Don't give up hope, that is a huge drop on the billirubin. I am sure he knows you are there, just keep holding his hand and talking to him which I am sure you are, he will know. I think about you often and come back to check and see if there has been an up date. Try and get some time for yourself, go and take 30 minutes and try and grab some food, take a nap or just get some fresh air. x
Hi all. Partner still very very drowsy, I’ve only had one day of him being able to tightly squeeze my hand and he does half open his eyes when you call his name. Last night they started a form of dialysis to see if this would enable him to wake up more and be alert so they can remove the tube as it can’t be left in any longer, they said it would take 24 hours so I was surprised to get a call at 11am today already to say they are doing a tracheotomy as he doesn’t seem to have changed overnight. His bloods are very very slightly improving and the lung infection doesn’t seem to be a huge concern. Hepatology have said they’re exploring some not readily available treatments for HE for him which I’m taking as a small positive. Day by day, I just wish he’d wake up properly
he’s obviously a fighter, you must be exhausted, I hope you are getting some support? Sending you love and strength x
No wonder you are terrified. I'm so sorry.