Hepatic encephalopathy reoccurrence

[Chrislillie]

Hi I'm a first time poster but I've been stalking this wonderful site for a wee while. So a big hello to everybody. I've not really posted on a forum before so here goes...

I need advice. I'm currently caring for my brother, whom I love dearly. He has a whole list of alcohol related issues cirrhosis, epilepsy, liver failure, varices and on top of that liver cancer. He's had a few hospitalisations for HE and I've just admitted him again after a fall. He's 61years old and probably drunk for 40 of those and his live in partner is currently in rehab drying out.

I know he doesn't drink enough fluids and I just can't get him to drink. He doesn't drink alcohol anymore and is really good at taking his medications and eating small amounts frequently. He sleeps a lot and has mobility issues.

My question(s) are what can I do to get more fluids into him? Are the HE episodes going to increase as he nears the end (we know he's terminally and it's openly talked about). I think he's a stage 2 - 3 on the scale. I love the NHS but I feel I've not been given an answer that clarifies it. What are the signs? Is there a 'normal' course that HE takes?

I hope the above makes sense any advice would be grateful received and thank you in advance.

Lee

[AyrshireK]

Hi Lee, the British Liver Trust has an excellent guidance page on Hepatic Encephalopathy at:- britishlivertrust.org.uk/li...

Whilst he is in hospital it might be worth asking about him seeing a dietician who can advise you both on fluid intake etc.

Sorry I can't help more on the subject of HE because personally i've only witnessed hubbies minor HE symptoms.

Katie

[Chrislillie in reply to AyrshireK]

Thank you for your very quick reply the hospital have been very good but it's my brother he becomes child like and refuses to drink because he can. It's frustrating ... but once again thank you

[alfredthegreat in reply to Chrislillie]

Hi there, just a thought, have you tried the bottles of flavoured water like lemon and lime, forest fruits, strawberry, kiwi? there are many flavours and any fluid is better than no fluid. Wishing you all the best in caring for your brother. Regards, Alf

[Hidden in reply to alfredthegreat]

Hi

I was thinking the same as Alf but also does he like sparkling water which you could add a bit if juice to or flavoured tonic water. Thinking of you all. Take care Lynne

[alfredthegreat in reply to Hidden]

Good thinking Lynne. The sparkling water always seemed to make me feel thirsty for some reason and so I would drink even more of it than the still.

[Hidden in reply to alfredthegreat]

Thank you. It just helps to settle my stomach as does soda water too. Take care Lynne

[Hidden in reply to Hidden]

Lynne

I have been told by Hospital not to drink any sparkling drink at all. Not criticising your comment in any way - this is just MY experience but I honestly can’t remember which of my conditions I have which this was in relation to; liver, diabetes (don’t think it was that), tummy polyps, etc etc ☹️?

As chrislillie (edit - sorry - I should have said Lee) probably knows you are supposed drink 2 and a half litres of water a day (well in my case I was told that!) - not that that helps chrislillie at all ☹️. But like big fred says I was told flavoured water is 👍👍.

Miles

[Hidden in reply to Hidden]

Hi

Thank you for that Miles, I've never been told that. My consultant said it was ok but he is a bit blasé!!! Take care Lynne

[Chrislillie in reply to alfredthegreat]

Thank you. I’ve not tried them but I will now.

[moonbeam4]

I find it odd but as a person with cirhosis I struggled to want to take in liquids even when extremely dehydrated and I have heard others say the same. As time has passed ( a few years since my last alcoholic beverage ) and with a healthier diet and lifestyle , I have found it easier to drink liquids other than coffee but it seems to be a peonominum that occurs to some folk with liver disease. I would love it if someone can explain why to me. At my worst i would literally beg someone to put a line in me, yet cauldn,t drink?. I remember a nurse at the Hospital telling me she had seen others like it, but she cauldn ,t explain why. Eventually I found a ginger cordiall that I liked, and found several things that helped. Firstly, I take electrolytes to keep salts etc in balance ( the sachets are not that expensive but the Doctor should prescribe if you ask ) also, for some reason drinking my cordial warm really helped, as did drinking through a straw, don,t ask me why, I have no idea!. Now, every time I have a tea/coffee I pour a large glass of cordial with half boiling water from the kettle, half cold water, and drink it through one of those metal straws ( just discovered them and they,re great!) I make sure to finish the glass before having anymore tea/coffee and this system works for me. I still can get dehydrated and keep an eye on urine flow and colour ( appreciate maybe a little difficult with your brother though ) and have a rehydration sachet if needed. Best wishes to you, in my thoughts, m.b. x

[Chrislillie in reply to moonbeam4]

Thank you for your lovely reply. I had a chat with the consultants on the ward last night and his thoughts seem to be 'you can take a horse to water....' and sadly it's true. Any water is favourable he said but if he's not drinking then there's no way I would be able to get fluids into him.

Oddly enough my brother was desperate to drink yesterday but really that's just to get home and I know we will be in the same position soon enough.

I may ask for some 'palliative care' at home so that someone other than myself can gauge when he is beginning to get HE, become dehydrated and so on...

So thank you for all your replies it's helped me take a step back and rethink the situation.

[Hidden in reply to Chrislillie]

Hi. It is essential he keeps well hydrated by drinking plenty of water, tea and coffee. Dehydration causes confusion therefore making his HE appear worse.

Good luck

Laura x

[Hello116]

HE will get probably get worse if the liver is getting worse. Is he taking Lactulose? If not that will help. It lowers ammonia levels which causes HE. ALA may help also. Lactulose is widely used for anyone here in the states with a higher than normal meld score. If hes in the hosp he should be on an IV for fluids. Not sure what NHS but I also just read the link below and it basically says everything I typed but Ill post anyways cause I already typed my answer Best of wishes..

[Chrislillie in reply to Hello116]

Thank you for your reply. Yes he's taking a prescribed dose of lactolose and is generally very good with his meds. He is on a drip in the hospital.

[Hello116]

I have read with some people that the lactulose stopped working They never mentioned if it stopped making them use the bathroom alot or if it just wasnt helping with the HE. A blood test for ammonia levels would let you know for sure. If hes not going you can just take more it wont hurt. My grandmother had HE due to liver failure caused by cancer and she slowly faded out.

[Hidden in reply to Hello116]

Hi Hi - oops, I mean Hi hello

Lactulose stopped working for me and by that I mean it stopped having the desired effect of making me go to the toilet (the one that isn’t weeing 😁) the required 3 or 4 times a day. In the end I was prescribed enemas to self administer. I really hope no-one else gets to this situation - it’s not the most pleasant thing to have to do.... thank God I had my TP after only a couple of months of that 😁👍.

Miles

[A9KSY]

I'm the same age and had the same issues the HE will get worse and there are other issues that go along with everything luckily perhaps miraculously I was given a transplant otherwise well I wouldn't be here. If he can just enjoy what you have left whilst you can. Sorry this sounds so negative.

[Chrislillie in reply to A9KSY]

No it’s not negative it’s realistic. I feel I loose a bit of him each time. We have chatted no end about the could haves, should haves and in moments of real clarity he says that for years he poisoned himself and now he can’t take drink something that will save his life.

He’s not suitable for transplant. Thank you for your input.