Is HE always inevitable with severe chronic liver disease?

[Mami77]

My daughter has been told there is nothing more the doctors can do for her multiple hepatic adenomas. Transplant is not an option, due to serious underlying health conditions and also total lack of fitness . She has at least 15 of these tumours taking over her liver now. She has had a resection last year and two embolizations this year and now it is far too risky to do anything else.

I would like to know if HE is always the end result of severe chronic liver disease? My daughter has recently had cognitive changes... in that she has episodes of transient attacks where for a couple of minutes she can hear me but cannot talk. Her eyes are open bur she cannot respond. Thankfully it just happens for a minute or two each time. She is also getting more confused, not remembering the time of day, not remembering that she has just eaten a meal and questioning whether it is lunch time or dinner time now.

Are these symptoms of HE? Will definitely mention them to the consultant. Is HE something we should sadly be prepared for? Would really appreciate your views... thank you.

[carmik]

Unfortunately once liver becomes so bad toxins will build up which causes HE. So sorry to hear of you're predicament.take care of yourself as well.

[Mami77 in reply to carmik]

Thank you so much for your reply and your concern. It's a really frightening situation to be in as her mother, always fearing the worst case scenario. My daughter's blood flow going out of her liver is already being compressed by the largest tumour and we have been told that ultimately the blood flow going in will also become compressed, as the tumours get bigger. The largest one was 12cm earlier this year, before her second embolization. There were 12 tumours at that time, up until July and now there are more than 15 since November. Unbelievable growth rate for something that is not cancerous.

Tragically we know that eventually she will go into liver failure but I am also extremely concerned about potential HE. She is already experiencing HE symptoms such as confusion and forgetfulness. The future is really too daunting to think about. I am trying to make the most of each day, keeping her as positive and comfortable as can be.

[BritishLiverTrust11 Moderator]

Hello

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[Mami77 in reply to BritishLiverTrust11]

Thank you so much for your suggestion. I will definitely consider it. Really appreciate your support.

[Researchfreak]

good morning. So sorry to hear about your daughter. No mother should bury their child. Is your daughter taking the meds for HE.

[Mami77 in reply to Researchfreak]

Good afternoon... sorry for delayed reply. Been a hectic day! Thank you for your message. My daughter has not been diagnosed with HE thankfully. I was wondering if this is inevitable end stage with severe chronic liver disease.

I am particularly concerned as she has been having some of the symptoms of HE which I have read about... such as some memory loss and confusion. The other more worrying symptom are the transient episodes she has had, when she is awake and can hear me but can't speak for a minute or two. Really very worrying.

[Researchfreak in reply to Mami77]

look at British liver trust Hepatic Encephalopathy. It may give you guidance to some of your questions. Keep talking to people, cry shout swear, anything to help you cope. I have stage 4 liver disease called PBC but my disease is through autoimmune disease. I am on meds to slow it down I was very unwell until I was diagnosed in April this year. Meds and an operation have given me a better quality of life. I found acceptance helped me to move on make decisions and live each day. Being so ill and being aware of it I was ready to go and told my family they had to let me go. Heartbreaking but without their acceptance I couldn’t move on myself. The I got a diagnosis and the hospital moved quickly. I can not have a transplant either. Please get your heart and your head in the right place and enjoy what time you have with your daughter. Best of luck. Thinking of you. I am lucky I have a strong faith too.

[Mami77 in reply to Researchfreak]

Thank you so much for your heartfelt words of advice. Yes it helps to let emotions out with friends and family... and now my newly found support group. Talking to people helps tremendously too... like you've suggested. I'm deeply saddened to hear about your own health condition. It is good to hear though that the operation and medication have helped to improve your quality of life thankfully.

Unfortunately, eventhough my daughter has been on palliative level of pain medication since last year, it simply seems to just take the edge off her pain due to the sheer number of tumours. Her pain medication had to be increased again a few weeks ago and she has become even more bedridden now and this is something she really wanted to avoid.

[Mami77 in reply to Researchfreak]

Like you I think she has accepted the reality of her condition... but sometimes everything feels so surreal that it's hard to believe even for her. I am just carrying on on autopilot I think, as I have no other option. I need to be there for her.Think I have not mentioned before that my husband was recently diagnosed with a complex form if dementia, and this is on top of his cancer of the bone marrow which he was diagnosed with last year. So I am infact caring for both of them now. It's incredibly heartbreaking for both my daughter and I to see all the changes in him, as sadly he is like a totally different person now. It's really shocking how quickly it came on around March this year and just how quickly he has deteriorated since then.

Seeing how quickly my husband's old self is slippling away from us has been really devastating, especially for my daughter to see her precious dad like this. So all in all... it's been one hell of a year. Still trying to stay positive for them both... and looking forward to Christmas and another new year when we can make new memories God willing. Wish my faith was as strong as yours. Please stay strong yourself... will be thinking of you too. Hope and pray you are as comfortable as can be... and same for my dear daughter and husband too.

[2022minks]

My mum had nash cirrhosis of liver and although everyone's journey can be very different, once you reach a stage where nothing can be done to halt or repair the liver you are left with limited time. HE can really impair thought processes, can bring on hallucinations, paranoia out of character mood swings, prevent you being able to think, do your favourite hobbies, write and to think rationaly or even manage your day to day tasks. Talk with your daughters doctors they will be able to prescribe things that could help. My mum would have many episodes that ended in a shut down, she would be in a comotised sleep one day, eyes open the next but unable to speak and gradually within 3 days would have rebooted to being herself again. As a carer I was always searching for answers in what symptoms mean, what will happen next, what to expect and in the end just take every day as it comes, make memories, record and take photos, say all the things you need to say because all too quickly time runs out, I send you and your daughter much love ❤ ❤

[Mami77 in reply to 2022minks]

Thank you so much for sharing your experience. My heart goes out to you for losing your dear mum. You have been so brave yourself and gone through so much caring for your mum. Like you, I am also looking for answers. It is incredibly heartbreaking and devastating knowing that there are no other treatment options for her now. Also knowing that the venous outflow from her liver is already being compressed by the largest tumour means that it is only a matter of time till the blood flow going in will also be compressed by the ever growing and multiplying tumours. This will eventually sadly lead to liver failure and my heart just breaks for her.

Thank you again fir your advice. Will speak with the doctors but the thing is my daughter is still totally unaware of HE. It is an awful thing for her to find out about. I am finding it so painful to accept myself.

[2022minks in reply to Mami77]

My mum didn't know she had HE and at that point because her path was set, I know mum was told via the consultants of her condition and she knew there was nothing to be done, but she still had faith that she would beat it even after what she had been told from her consultant. And I was the one that trawled for information, my mum didn't want to know what was happening and that was her way of getting thru so I did the research and knew what could happen and I googled what to expect but it only gives you the main info, never really touches on the day to day problems, those things you live thru 24/7 , toilet accidents 2 to 3 times a day, falls, mum not wanting to eat, sleeping then waking up and not knowing where they are and them hallucinating where they are, water infections,total change in character etc we had the district nurses in for 10 to 20 mins per morning to give insulin and check for bed sores and then we were on our own until the last 8 weeks and the hospice at home team came for half hour in the afternoon & evenings. My dad helped in the last 4 months he slept on the sofa most nights so if mum needed anything he was there. I covered from 7am thru to 11pm and most nights we were up and needed. So glad you and your husband are with your daughter and when time hospice care will kick in and it is a great service so do ask her doctors/ care team what to expect in help and any concerns you have keep asking. The nurse helpline from the British Liver Trust is also a great way to find out more. I wish you all love and a smooth journey not one you probably thought you would ever expect to do but to do is also one of the kindest things we can do for others xx

[Mami77 in reply to 2022minks]

Thank you so much for sharing your experience in depth throughout. It has given me a really good insight into the various things that can sadly happen with HE. I understand that each patient is different and symptoms too can vary. However, the sad reality is that any one of those symptoms experienced by a loved one will no doubt be so painful to see. You have given me such great inspiration through the loving and caring support you have given to your mum. Yes, you're right in that I never would have dreamt of going down such a journey. Less than a handful of years ago I never would have imagined being in this situation now.

Thank you for your kind supportive words... will continue this journey with courage and strength... in your footsteps 🙏xx

[Mami77 in reply to 2022minks]

Much love to you too ❤ ❤

[Mami77 in reply to 2022minks]

Like you I am also always searching, asking, looking for answers and wanting to know what to expect. Despite everything we are going through... I'm still managing to stay positive for both my daughter's and husband's sakes. We are taking it one day at a time... trying to make the most of each day, making new precious memories. Thank you again for your invaluable advice 🙏

[2022minks in reply to Mami77]

It is good to be aware of what can happen as helps you deal with situations as they arise and more importantly to keep your daughter in comfort. And work as a team around your daughter, remember to take some time to recharge your own batteries, a walk outside is always one of the best ways to clear your worries. Xx

[Mami77 in reply to 2022minks]

Yes I agree with you totally. Knowledge always helps to be better prepared in any situation. My main goals now are to keep both my daughter and her father as comfortable as possible... and to help improve their quality of life in every way possible. My heart just breaks knowing that my dear daughter is having a normal life snatched away from her... she won't unfortunately ever become a wife or a mother. She won't have the options in life that someone of her age would have... and sadly we have grown to accept this fact.

Thanks for the walking outside tip. This is something I really intend to start again in the new year, as this week and next week are really hectic for us with loads of hospital appointments. Breathing in the fresh air outside is a real tonic! I used to go for daily half an hour brisk walks one upon a time!

Thank you again for your continued support and suggestions... really encouraging to remain strong and continue taking things one day at a time 🙏xx

[2022minks]

Love and hugs to you xx😘

[Mami77 in reply to 2022minks]

Thank you.... same to you too 😘 xx