Long story short my farther has liver cirrhosis caused by excessive alcohol which was diagnosed some years ago.
Unfortunately he will not discuss it and has said in the past some bizzare stuff about it being misdiagnosed that it’s only 0.01% damaged and so on.
It’s blatantly clear he has cirrhosis and we’ve had two situations this year whereby he’s got himself into unbelievable situations due to episodes of HE and fitting but still doesn’t accept the prognosis despite every hospital he ends up in both here and abroad saying it.
He tells me that it’s nothing to worry about and in his exact words
“well my consultant says I’ve had no further damage”
Correct me if I’m wrong but when you get to liver cirrhosis any further damage is your liver failing??
I must add that he has a consultant but visits are infrequent and often cancelled. Don’t have any idea of what goes on beyond closed doors but completely changed in the last year or so, very dazed and confused, always sleeping and having issues with eyes.. doesn’t seem like he lives in our reality.
Hi again, I am sure you've posted a few times now about Dad's situation but none of the previous posts are showing up - perhaps you've deleted them (pretty sure i've replied to you before).
If Dad has a diagnosis of cirrhosis and is displaying the various symptoms you describe then he is obviously very poorly and also very much in denial.
Unfortunately unless he lets you in and allows you to help him manage his condition there sadly isn't a great deal you can do. If he's drinking and not compliant with the medical regime or not attending appointments then sadly even the doctors can't force him.
Some people get a wake up call if they end up in hospital via emergency and realise that unless they change their behaviours they are in for a nasty end. If however they don't heed warnings and leave it too late then sadly it only goes one way - which isn't a pleasant watch for loved ones.
The British Liver Trust website has a page all about cirrhosis with some of the main symptoms detailed. There are some obvious 'red flag' ones that do require urgent medical treatment but patients wishes often can't be over ruled unless some form if legal order, power of attorney (or similer) is in place.
Dad may just have made up his mind that he'll just see out the remainder of his life this way - not nice for you to witness or go through but you may need to prepare yourself for this outcome - which I wouldn't wish on anyone.
I'm afraid the last phonecall my ex had with our daughter involved him telling her that his latest test results were all normal and that if he just carried on doing what he was doing, then he'd be fine.
The reality was that he was at end stage liver disease, decompensated with ascites, probable HE, loss of mobility and doubly incontinent. He died within a few months of that call.
We have no idea whether he was trying to protect her, or whether he was just completely in denial. He had been in a coma the previous year and was in and out of hospital for the next nine months having his ascites drained, being given albumin top ups etc.
One of the hardest things was getting to the truth of how ill he was. I had spoken to the BLT helpline a few times, asking their views on what his symptoms meant. I knew he was likely to still be drinking and so that paired with all his symptoms gave a fairly clear indication that he didn't have long to live. Unfortunately as my daughter was only 15, no medical staff would talk to her without his permission, and so it was all very much guess work on my part.
I tried to prepare my children for the worst but I was never really sure if I was right to do so, and how long the last stage of liver disease could last.
I have no helpful advice, but wanted to empathise.
Hello to the both of you.
Thank you for the kind words and support you’ve given to me at what is a difficult time.
I have posted before however I’d feel guilty of going against my Dad’s narrative and remove it but unfortunately I can no longer live pretending all is ok.
Update on Dad - very long story but to give you an idea. He tried to go on holiday in August with other members of family. He had an episode of HE and a fit in the toilet of the plane whilst they was closing the cabin doors. Family members had to get involved and saw him at his worst (which he’s always tried to hide) after him holding the plane for 3 hours he refused treatment, went home, had a few drinks and booked another flight which he did make.
The 10 days he has abroad started reasonably ok but towards the end it was falls, sleeping all the time, being secretive and drinking wine and vodka. Eventually resulted on him not being able to get out of bed on the last day. The island was very remote so he had to make his own way to the mainland and see a doctor. Mum was telling doctor it was all long covid and the doctor couldn’t understand. Relative advised of cirrhosis and doctor straight away diagnosed HE. Prescribed meds and said test two days.
Relatives went home on flight only for Dad to have a major fit and be admitted to hospital. Spent 10 days being treated for HE, liver problems, his kidneys shutting down and also a brain bleed where he’d had a fall. Finally discharged but wasn’t fit to fly so has eventually made it home several days ago by being repatriated by insurance.
I must add this is the second time this year he’s travelled abroad whilst suffering and ended up being admitted to hospitals. His GP has now said he’s not to travel so his insurance is void.
Dad point blankly refuses to believe any of this was caused by his drinking and has come out with some bizzare reasons. Mum also defended him and said everything being said by relatives was lies which has caused lots of heartache.
When Dad realised I was upset he “love bombed” me via mum and said he would give up drinking and ace getting a new liver. Dad now says he’s still going to drink for celebration.
Called Mum today and she had been concerned because Dad had been dazed and confused this week and hadn’t been able to go to poo. She’s filling him up with laxatives and he’s using lime and water to detox. Mum won’t take him to hospital because they’ll look at his pills. Side note - Dad is also addicted to prescription pain killers and cocodamol.
Dad is a good man and has had a very good career in the armed forces and public service but the alcohol has taken him away. I must also add Dad is completely deaf and has been for a year or more. No idea is this is linked to the addiction but the hospital cannot explain it and cannot rectify it. He’s not also struggling with his eyes and waiting for a referral which means he can’t even message me.
Mum (step mum) is a kind lady but point blank refuses to understand the severity of it and covers for him. Mum tells me lots of things but when I say them back or ask she can ger a bit defensive.
Her words today “your farther isn’t a well man but he’ll try”
Neither Dad or Mum have anything else in life but to go to pub and bars. Dad has wonderful family in the next town but because most of the time he’s in a dreadful state so
Shys away. I am 200+ miles away and see him when I can.
Sadly, his HE isn't going to get better if he's unable to use the loo. The probably cause for laxatives not working is he's obviously taking co-codomol. A well know affect of codeine is constipation.
Sadly, I think you need to prepare yourself for what's to come because he's on a one way trip going by the symptoms you describe.
There is little anyone (even hospital) can do if he is continuing to drink and being non-compliant.
Not a lot of further advice we can give only to look after yourself in all this because sadly it's only going one way.
It’s a terrible situation. I don’t want to lose Dad early but the way things are it’s coming at speed.
You seem to have an incredible amount of knowledge so I’ve got some questions..
Now that HE is starting to take hold more frequent does that mean things are becoming worse? This year is the first time the confusion has started but don’t believe his consultant etc is aware?
Secondly as things continue to get worse what things should be looked at for and expected?
Dad says he’s trying not to drink but he’s still in a bad way with no improvement considering he’s not had anything. Ultimately once he gets out the house he’ll go to pub.
He's sadly on a very slippery path - you say he was already hospitalized due to falls, brain bleed and kidney issues together with HE. You can't really sugar coat it. Sadly a demise due to liver failure isn't pleasant for anyone to witness.
Decompensated liver symptoms include those of bleeding (from varices), ascites - fluid build up often including the legs, groin and feet in the form of oedema, bloods are likely to be off the scale (too high bilirubin leading to jaundice which in turn can lead to a mad sub-skin itch which is intolerable), fluid can also become infected causing all sorts of other issues. Hepatic Encephalopathy is caused by toxin build up in the blood stream and going onto the brain causing an element of actual brain damage - HE can lead to coma and can be a cause of death in liver disease. A failing liver can impact on the lungs and also the kidneys. Often a patient will go into multiple organ failure.
You really do need to be prepared for the worst possible outcome at some point, even full alcohol cessation now may have come too late but stopping will certainly give him the best possible chance.
The BLT website has loads of good guidance explaining cirrhosis and the various symptoms, there is also a really useful page on HE plus one about planning for the future - though Dad and Mum seem both to be in denial about how serious this situation is. It might be that they are trying to shield you from the worst but you need to look after yourself and in some way prepare yourself.
Thanks Katie. It’s not a nice subject to talk about but you somewhat deliver it in an informative, to the point way but still caring.
We all know how this is going to end but unfortunately it’ll still break our hearts. I think the damage is done and if the alcohol doesn’t get him then the pills will - for me to have to talk about my Dad like this is devastating but like you say you’ve got to be prepared for the worst.
When someone suffers from an episode of HE do they remember it? The problem with Dad is whenever there’s an episode he says he doesn’t remember. Whether that’s not wanting to admit it or not it’s worrying.
When I called this weekend Dad was watching a TV documentary on something that sets him off. He was in floods of tears saying “I don’t ever want to forget what happened there” which seemed very odd for him to say as why would he forget serving in the armed forces.
Dad and Mum are very insular. They don’t like people knowing their business and since Dad lost his hearing they’ve been reclusive. Sadly I think Mum knows the situation but doesn’t want to accept it untill he’s gone. It’s a shame as my Dad as already being youthful and fun loving but now he’s a shell of himself that doesn’t have much recollection of what’s going on.
I hope all is well your end and again, I can only thank you.
Best wishes
Update on Dad -
We have “good” days and bad days. Suffering from episodes of HE related confusion, very withdrawn and not responsive, no strength to move and get around to do daily tasks such as using the shower, itchy skin and constant tiredness.
Mum says he’s still off the booze but he has taken a downward turn this week. Finally starting to admit maybe it is too little to late for him and that he’s not well.
Blood test and liver scan next week for his “catch up” with the consultant but not sure what will come of that.
Your live is the only organ that can heal itself. Depending on how far along his cirrhosis is, it MIGHT be able to heal itself with proper care, diet, exercise water maintenance, bowel movements.
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