End stage liver disease & cancer - wha... - British Liver Trust

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End stage liver disease & cancer - what to expect

Alo123
Alo123

Hi everyone,

On NYE of this year, my 75 year old dad was diagnosed with end stage liver disease and liver cancer (after a lifetime of pretty heavy drinking, although he wouldn’t admit it). The diagnosis was obviously quite tough to swallow, as was the prognosis - he was given ‘months vs years’.

Over the past couple of weeks there seem to be bad days and good days with how he’s feeling, but since he had a drain in his stomach (for his asceities) he has deteriorated a fair amount.... he was not able to get out of bed for a couple of days, had no appetite whatsoever and had quite a lot of brain fog.

One thing that we would really appreciate is some advice on what the final stages of this disease really look like. I presume that the eating and appetite gets worse and worse (although this is currently pretty bad and my dad has a lot of nausea), he has pretty low energy (finds it hard to get out of chairs and is a little unsteady on his feet), and as I said, at times he has been a little mentally confused (often in the mornings - i have a theory that he is trying to make sense of his dreams) and has at times struggled to find words. He also sometimes has pain in his liver.

Currently I am at home caring for my dad alongside my mum, but I had two brothers and a sister (along with 3 of my dads grandchildren) who are not around (due to covid risks), and a big worry of ours is that we want to make sure that they are able to spend some time with my dad before he really deteriorates. I know that everyone is different but I would so appreciate some information on what the very final stages of this cruel disease look like, as we really want to make sure that our family are able to be together before that and also just prepare ourselves in the any way possible. We also were wondering if the final stages are usually spent in hospital vs at home (due to covid, my dad is at home but we have a feeling this wouldn’t be the case in normal times).

Thank you in advance.

28 Replies

I would like to follow your post as Iam in same situation with my husband, don’t seem to get any helpful info from our liver doctor as to if he is near end of life as he is having heath issues on a daily basis, as my husband is always with me at appointments it’s not something I can ask in front of him hope you get some helpful info all the best x

Alo123
Alo123 in reply to Whitethorn

Thanks for your message and sorry you are going through this too. We also have the same problem in that all of the communication with my dad’s consultant has been with my dad there too. We (my mum and I) actually are planning on trying to email the consultant direct (if we can track down her email address) with some more specific questions that hopefully she can answer in a more frank way given my dad will not be a part of the convo.

However my mum has already asked my dads consultant for her advice on whether my brothers and sister should be around now, and she said ‘you will know when they need to be around’... which isn’t that helpful, and I kinda feel that she is implying that the very end stage is when our family should all be together.... but in our view, that’s a little late - we would prefer to spend time together before it gets to the point where my dad is unable to enjoy it.

Hopefully we both can get some advice / info from this forum.

All the best for your husband.

Laura009
Laura009 in reply to Alo123

Hello to you both. I am so sorry you are having to go through this with your family members. It is incredibly tough.It's impossible to say how much longer they have to live, end stage doesn't necessarily mean death is imminent and every case is different.. This was my experience.... l should warn you it wasn't pretty and l truly hope when the time comes your loved ones slip away gently ......

Apologies to those of you who have read all this before but l guess these stories need to continue to be told .....

My husbands liver disease was caused by alcohol abuse. First diagnosed at the age of 50. Despite efforts to make him understand he had to quit drinking in order to survive, it was 4 years later before he finally did but the damage had been done and at this point there was no way back.

3 months after he had managed to give up, he had a nose bleed which was impossible to stop. I called 999 in the early hours and was taken to the high dependancy unit and to ICU 2 days later. There l was told his liver had failed, so had his kidneys. There was no chance of a double transplant as he had only managed to abstain from drinking for 3 months, he had to have done so for 6 months in order to get on list, then there would be the wait for these rare organs to become available. As the days wore on he was tubed and wired up to numerous monitors and machines which in all honesty were keeping him alive. Whenever he tried to speak blood would run from his mouth. He had 1 to 1 sometimes 2 to 1 round the clock care. I had every faith he was in the best hands, receiving the best possible care. By day 10 in ICU he was wearing a huge mask as, on top of everything else he developed broncho pneumonia. They told me oxygen was being pumped into him at a rate equivalent to driving down a motorway at 80mph with your head out of the window. I was told he was in a very grave condition but they wouldnt give up hope but realistically he could survive no more than 3 to 36 hours. By mid afternoon l was taken aside again for the docs to tell me he was deteriorating rapidly and they felt the kindest thing do do for him would be to top up his dire morphine and let him go. The nurse removed his mask telling him he had done really well and she was going to lay him down so he could have a rest ... (such compassion to the very end ) My husband sat bolt upright, turned and smiled at me with a smile l hadn't seen for years. This tortured soul, my husband, lover, best friend and Father to my beautiful children was finally going to rest and be free of pain. I sat and held his hand as the nurse sat with me with her arm around my waist as we watched his last heartbeats and last breaths on the screen until all the lines ran straight 💔

💔

Roz22
Roz22 in reply to Laura009

Laura keep on telling your'e story dont apologise for it although its heart breaking it's good to know you and you're family are happy once again .People new to the forum need to hear it. you have been a great help to many of us when we have been unsure.Best wishes

Liz

Laura009
Laura009 in reply to Roz22

Thankyou so much for your kind words Liz. How are things with you and hubby? Take care, stay safe.

Laura x

Roz22
Roz22 in reply to Laura009

Ok at the moment thank you Laura. 😷

Laura009
Laura009 in reply to Roz22

Great news. Long may it continue 👍

Alo123
Alo123 in reply to Laura009

Thank you so much for sharing this information and your experience with your husband ... I am so so sorry that you had to go through that and am also so sorry for your loss. It’s heartbreaking to hear what you and your family went through, but at the same time, it is helpful to us as we do want and need to be aware of what could happen, so I’m very grateful to you for sharing. Thank you.

Laura009
Laura009 in reply to Alo123

You are more than welcome. If our experience can help you and others going through the same awful addiction and disease then l'm more than happy to keep sharing our story. It must be doubly hard for you not being able to see your poorly loved ones during these lockdowns. My hopes for you are that you can have some real contact with them very soon. Anytime you need to talk don't hesitate to contact me.

All the very best to you and your families.

Laura xxx

MarthaRock
MarthaRock in reply to Laura009

Dear Laura, my heart hassincerely has been touched and moved. There for the grace of....xx

Laura009
Laura009 in reply to MarthaRock

Thankyou so much Martha xx

Catlady1972
Catlady1972 in reply to Laura009

😢 🙏🏼🌹

mumof3girls
mumof3girls in reply to Laura009

thank you for sharing x Lisa

Trust1
Trust1Administrator

.We are so sorry to hear about your father and it sounds like you are doing your best to care for him. Has he been referred to palliative care? They can help support you at this difficult time. This can be done through your specialist consultant or through your GP. If you are in the UK, Please contact our nurse-led helpline Mon-Fri 10.00-3.30 if you require further support/information.

Alo123
Alo123 in reply to Trust1

Thank you so much for your message. We have not yet been referred palliative care, but it was suggested by our consultant and we believe it is definitely the next step that we want to take. Only problem that I think my father is less keen... which is obviously a difficult situation, but we do feel that it could help.

Thanks for the hotline details - I’ll definitely give you a call.

Trust1
Trust1Administrator in reply to Alo123

Of course it is a very difficult conversation to have and your Dad should be supported and guided by his medical team regarding this- if deemed appropriate.

You may find our publication 'Thinking Ahead' useful to read prior to speaking to the medical team:

britishlivertrust.org.uk/wp...

Please do call our nurse team for chat if needed.

Alo123
Alo123 in reply to Trust1

Thank you again. That document is so helpful. From a quick read, I can see that we should definitely be talking to a Macmillan nurse / hospice.

We have heard that his consultant has contacted our GP for them to make a referral for a hospice so we are hoping that this takes place quickly.

Thank you again for your support - I am so very grateful.

Hi Alo. I am sorry you are going through some very bad experiences at the moment.

Could you post what medication your father is on.

When you have a drain it is a pretty big shock to the system so no wonder he’s washed out.

The less he eats the more nauseous he will become.

Try home-made soup and blend the protein meat and vegetables so there is no effort in eating. Also at start of the day try to give him fruit but if he cannot eat it then liquidise it. The confusion in the morning is probably due to what it’s called encephalitis. If he is not going to the toilet on a regular basis then ammonia can build up in his system and cause hallucinations and very vivid nightmares. To help with that he will need lactulose. This should make him regular and dispel the ammonia when he finally finds relief.

In end stage liver disease its different for everybody. The liver is a very strange organ and you will find he gets good days and bad. Overall, if he has been in a very poor state of health then the liver will suffer and it will let you know about it and sometimes the doctors think we are closer to death than is the case. So concentrate on trying to get him to eat properly, keep clean and rest regularly.

Your in my prayers

Alo123
Alo123 in reply to cammeag

Hi Cammeag,

Thank you so much for taking the time to respond and thanks for the really helpful advice and info.

The medication my dad is on is as follows:

Carvedilol

Lactulose

Omeprazole

Theamine

Vitamin e compound

Fortisip compact protein liquid

Rifaximin

However he is refusing to take the lactulose (as he doesn’t like the regular bowel movements)... which is frustrating, particularly after reading what you said about it helping with the mental fog. I’ve tried to explain this to my dad, but it’s not really getting through.... hoping a professional can help on this.

Thank you again - your post was very helpful.

Laura009
Laura009 in reply to Alo123

Yes he really must take that lactulose. It removes the toxins in the blood and why he must go to the loo several times a day. By not taking it he is increasing the chances of the toxins going to his brain causing Hepatic encephalopathy which can be fatal.Laura xx

Sorry to hear about your dad. I think my hubby is heading this was too x Lisa

Laura009
Laura009 in reply to mumof3girls

Sending a hug 🤗 xx

Alo123
Alo123 in reply to mumof3girls

I’m so sorry to hear about your hubby, sending strength to you and your family. X

HI Alo123

When my husband was told he was at end of life the hospital and GP referred us to MacMillans and also to the district nurse team. MacMillans were brilliant, they came round to talk to us about what to expect and also sent an occupational therapist round to help with making getting round the house easier for my husband. The district nurses were also brilliant so everything was done to make sure I had the support network I needed. Luckily for us he has improved slightly so at the moment we don't need them as much but they ring frequently to check on my husband and they also make sure that I am OK as well. Not sure what is happening with regards to Covid but when they talk about hospice care, they also give you an option of 'hospice at home', which my husband has opted for should the need arise. Look after yourself, it's such a worrying time and it's really hard when you need your family around you and they want to spend time with loved ones x

Laura009
Laura009 in reply to JDA69

I'm delighted you too are getting such great emotional and practical support for both yourself and your husband whenever you need it.

Laura x

Hi JDA69

Thanks for sharing. It certainly seems that Macmillan care is extremely helpful and I think we would really benefit. It is tricky for us because my dad is in denial about what is happening and is reluctant to talk about Macmillan / hospice care... I wonder if anyone in this forum has had a similar situation to this? It’s tough to navigate when the person suffering is not accepting of the situation or the care being offered. I’m hoping the care hotline that the trust mentioned here might be able to help with some advice.

Thank you again for sharing with me and also I’m so pleased to hear your husband is doing well at the moment.

Take care

JDA69
JDA69 in reply to Alo123

To be honest, my husband was in denial right up to the point where the consultant told him quite bluntly he was coming to the end of his natural life and they were handing him over to palliative care. As it was said at his hospital bedside whilst I was there, he couldn't say he didn't know, plus we had to sign an enforced DNR to say he would not be resuscitated if anything happened to him. So it really was quite blunt and brutal but in a way it forced him to accept that we would need help and support and so would I, so I'm glad they were so honest with us. I hope you get the help and support you need.

Take care

x

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