Pianolover101

Morning everyone,

I haven't posted in a few weeks, but want to say how comforting I find it to read posts and the very knowledgeable replies (I'm thinking of you Katy! )

I spoke to one of the liver nurses a couple weeks ago and she was a total saint and gave me so many practical tips.

It's my husband. From November 22 until April 24 hospitalised 8 times as emergency, massive variceal bleeding, liver abscess, multiple duodenal ulcers, severe portal hypertension and diabetes (caused by severe acute pancreatitis) 6 years ago.

Cirrhosis was first mentioned November 22. He's had multiple banding, but carvedilol discontinued due to hypotension, had the liver abscess drained, the bile duct stricture with the large amount of stones cleared, and come through the severe sepsis. He has 'lots of collaterals, continued severe portal hypertension (I was told in April), a small blood clot in portal vein, and in the splanchnic (sp) vein and splenomegaly.

I was told multiple times that he would not make it and palliative care put in place. As of now he is working at very high functioning level, exercising, has put on weight, his colour much better and less pale.

However, and there's always a 'however', he is still drinking. I'd put it at about 14 units per week. He used to be a very regular drinker probably hitting the 40-50 weekly units.

Latest CT scan - results "looking good, but a bit of an irregular outline.

Fibroscan - 6.5 - so told just in May 24 that doubtful for cirrhosis by hepatologist, although every single discharge letter from Nov 22, states ARLD/cirrhosis.

Consultant decided to do a hyaluronic serum test because of results and it was 137. So, she says that she is reluctantly going to diagnose cirrhosis based on previous hospitalisations, varices, portal hypertension etc.

Husband has taken the 'no cirrhosis' diagnosis obviously. He refuses to attend for any more endoscopies, banding, and there was a DNACPR in place in April.

His outbursts of rage - totally out of control - are ever more frequent. He now picks up furniture to fling if he is so much as asked a question (not about drinking as I've stopped speaking about that). He has been told bluntly he must stop many many times and refuses to believe it. He was taken off our GP list because of his temper outburst with staff.

I do understand (I think) that nobody can give a timeline or likelihood of further episodes, but I don't think I can take any more of the massive haemorrhages, melena, his inability to stand up, double incontinence when unwell, and yet refusing point blank to go into hospital when paramedics called. He waits until he is so unwell, on one occasion, hypovolemic shock and I call ambulance and say he is unresponsive and they literally wrestle with him as he is a very agitated and restless patient.

Could he now be compensated although told decompensated November 22? I understand that you can go from decompensated to compensated - but surely not if still drinking. All I was told in April was that he would not have a normal life span due to cirrhosis, (senior hepatologist at large teaching hospital) and as you can imagine another consultant being 'dubious' about cirrhosis, the next month!

Is it possible that the relatively small amount of alcohol is ok for him? Or will there be an episode?

There is no possible way he needs palliative care, or any care - he was away on a mini break to meet up with old friends (in uk) last week for 5 days. Said he had probably 6-7 units on one night, but only around 2 units (a pint) on other nights. He drinks at least 1-2 small glasses of wine I'd say 4-5 nights, and I can smell beer/guinness some evenings.

He actually looks and acts (mobility) as though he is in excellent health - no meds apart from insulin. Lots of energy - although a very early bedder.

Apart from the temper/rage - violint outbursts he appears a very healthy 69 year old. He was offered TIPS but flatly refused. HE or just complete selfish lack of care and determination to live for himself and want zero communication about anything. He has always been a poor communicator and will do anything to avoid a personal discussion about any matter - even household. Now it's off the scale - if we just don't talk, he is perfectly fine, quiet, and just does his own thing - historical research, writing, his work etc. He wants to live in his own world on his terms and to hell with me basically.

I'm seriously thinking about leaving - but after 28 years in same lovely house, and at 72 it is daunting, and I could be jumping from the frying pan to the fire.

Sorry about length of saga!

[purplecatlady1]

I am afraid that I have no advice that I can give you, as I am here with different liver related problem. But I didnt want to read your story and not respond, to say how very sorry that you are in this situation.It sounds like you have been in an impossible situation for a long time. Please look after yourself and ensure that you are safe, you shouldnt have to live like this.

I am sure that someone with some good advice will be on here soon, but in the meantime you are in my thoughts and prayers.

[Hidden in reply to purplecatlady1]

Thank you for thinking of me - it's so appreciated. Yes, situation is impossible - but nothing I can do I'm afraid.

Take care and thanks again.

[2022minks]

Hi there, sending you much love and hope you give yourself some time out for yourself as being alongside someone with liver disease is not an easy road and you will always be the one to witness the worse side that this disease inflicts on your loved ones. Denial, aggression, severe mood swings, paranoia comes alongside this disease so if you are worried about his behaviour see if you can relay this to his gastrology consultant, a patients mental health is as important as his livers health and they should be able to help. Also push them and his doctors for counselling he won't be able to make any changes until he can address his health issues. Sounds like your husband is in denial of his health, the fact that he is still drinking after all of his hospital admissions and not facing upto improving his livers health.

Zero alcohol or he runs the risk of heading for an early death, sorry to say that but every sip is poison to his liver.

I think coming to terms with liver disease is always overwhelming and from reading your post he is not taking in the reality of how ill he has been and what may lay ahead.

He has many indications that his livers health is declining and this only ever leads to an early death. Transplant is only an option but only if he is not drinking I think for a year. There are so many great stories on this site of patients turning their life around but unfortunately for many there are no options. I hope that you are able to talk with his medical team and don't feel bad about doing this without his knowledge because one day he may thank you and I can only say being there for your loved one may be one of the hardest jobs with liver disease but is also an honour in the end as he really needs you even if it doesn't feel like that 😘

[Hidden in reply to 2022minks]

Thank you 2022minks,

You are very kind. Unfortunately, given that he will not engage with doctors at all on any level, there is absolutely no way that he would go for counselling. Any suggestion would only result in more temper tantrums.

I am though at a loss about the disease and its progression and am beginning to wonder if he has 'recompensated' as it were and in fact doesn't have cirrhosis or at least very mildly.

Now that they have cleared up the bile duct stricture, drained the liver abscess and got him through the very severe sepsis (I was called up to hospital in middle of night) - well I think that he is very much ok now.

Then I remember the consultant saying that yes, he still had severe portal hypertension, chronic pancreatitis - (symptomless!), needed scoped for banding regularly, and of course the diabetes. Yet to look at my husband now - he looks better than he has for years - and has bags of energy and an excellent appetite. |So for him, if he wants a drink and it is having 'no effect', he will definitely have one or two.

I have to learn to just let him get on with it - or make a decision to leave. I don't understand his illness at all.

Thanks again.

[Hidden in reply to 2022minks]

Sorry - I meant to add that transplant is not an option for my husband at all. He would never, and doesn't want that, and secondly doctors have totally ruled him out because of his health and underlying issues. They can't even do a liver biopsy or take out his gallbladder because of the collaterals. They treat the life threatening situations as they arise which as I've said has meant 10 hospital emergency trips in 2 years. Now he doesn't have banding, (his choice), doesn't take medication for portal hypertension (doc tor's decision due to him constantly falling over with low blood pressure). All he takes is insulin for his diabetes.

We await , and who knows maybe he will prove them wrong and get away with his few drinks a week for a long time yet!

Thanks again. This is such a lovely site, with so many caring folks like yourself. You are a tonic to me.

[2022minks]

I also think you should go in and talk to his GP practice, for them to take him off their list isn't looking after his welfare. Mental health issues can come hand in hand with liver disease and there is not enough help out there and I have found from my own experience as a carer there should be. Ask to see the practice manager and ask for help in addressing his anger and aggressive behaviour xx

[Hidden in reply to 2022minks]

Thank you very much for taking the time to reply to my overly long post. Appreciated. He is with another gp now and isn't complaining about them which probably means they are doing his repeat prescriptions for insulin etc ok. He is on no other meds.

Trouble is, and I know advice about speaking to doctors etc comes from a good place, but the patient has to engage. He won't. He isn 't attending for banding any more and just wants to continue with life as it is. I have to say, as I mentioned, that he looks unbelievably well and has loads of energy. However he is drinking around 14 units a week. He is never drunk - but I can't understand how he can drink and not be affected given his diagnoses.

I have to learn unfortunately to let him get on with the management of his health - I just want a prognosis - but I know that nobody has a crystal ball.

Thanks again.

[2022minks in reply to Hidden]

Because you are his wife it would be understandable that you could get to speak to his consultant privately it is also in their interests to work not only with the patients but next of kin too so if you have questions and need answers do consider contacting them, if you can't get to speak ask their secretary if you can send a letter in. They may also be able to get you some guidance or counsellor for you, as I said before LD takes its toll on you the family too, it might be able to help you work out what's best for you xx sending you much love and a virtual hug not easy for you at all xx

[Hidden in reply to 2022minks]

Thank you so much 2022minks for your lovely warm reply. I have spoken to his consultant and the endoscopist a lot. Basically as I've said, they have removed the imminent danger, sepsis, liver abscess, bile duct stricture. He is 'well', functioning at a high level, i.e., working part time, exercising, etc. But he refuses to cut out alcohol totally and is drinking around at his estimate 14 units a week.

Nobody can make him be abstinent, go to counselling, (he would never ever do that anyway), but his view is that his CP score is normal and the CT scan was only an irregular edge to his liver, and he has yet again been brought back from the brink - so why not 'enjoy' a drink now and again? He will not be moved from that and never will be I'm afraid.

I really am ok now with his decision. There comes a point when the penny drops that it isn't me who can force the decision to be abstinent - he has to want to be abstinent.

When he has had a couple of drinks - and it is just a couple - he is very tired the next day, and doesn't look as good. I also think now that there is ascites - but again, he will not allow me to see, or to mention anything health related to him. It provokes his temper and that often leads to him just 'losing it'.

I've asked every consultant to give me a rough prognosis and I get nothing apart from 2-12 years which says nothing. I'm 72 so I will probably be long gone in 12 years, and that's without cirrhosis!

All I do know for a fact is that he has severe portal hypertension, chronic pancreatitis, diabetes, enlarged spleen. However if you looked at him on a day when he hasn't had a drink the previous day - you'd say he looked very healthy!!

I'm asking the impossible - Nobody can predict, see into the future except to say that he is probably shortening his life. His choice.

I do appreciate your care.

[Readlots]

Hi, I’m so sorry to read your story. I’m more concerned about you than your husband to be honest. Are you getting any support? Have you got friends and family you could go and stay with? Could you take a mini break yourself?

Women’s Aid has a lot of information that you may find helpful.

[Hidden in reply to Readlots]

Thank you readlots for thinking about me like this. Yes, I'm fairly done in with this disease and its symptoms. I'm also frankly terrified about another 5-10 years of slowly declining health. Like so many others, I live from day to day awaiting another 'episode'.

Yes, I do have friends, but there comes a limit as to how long they can listen to me going on about cirrhosis, and what could/will happen next.

There is absolutely no way he needs care, and he would never ever accept counselling. After he was told yet again that he must never drink again, and he agreed, I knew that he would't. As he says , he enjoys a couple glasses of wine and is keeping his units to within the guidelines.

On one hand I'm very lucky that he has recovered so well from such severe sepsis and is self sufficient, exercising and eating well. He has had the constitution of the proverbial ox throughout the past 2 years.

Thank you again - it means such a lot.

[Readlots in reply to Hidden]

You’re welcome, and this is the place to vent so that you can talk about nicer things with friends 😊