Thanks to everyone who replied it is such a comfort to know that others care and know what you are going through. My husband is still in hospital , they have suspended the diuretic medication and he receiving fluids , he has been on rifaximin and lactulose for a number of years and up until recently was managing very well. He also had the TIPS procedure a number of years ago when things went badly wrong. Awaiting outcome of an assessment discussion re transplant ...he was previously on the list but was suspended as he took a mild stroke and then the view changed but hoping and praying we will receive positive news soon.
Encephalopathy is a frightening symptom of liver disease and sadly so many people are quick to judge and medical staff have limited knowledge in this area.
I tried to manage HE by making sure my husband took all his medication...especially lactulose ! in the run up to a bout of HE he would get everything mixed up, made sure he drunk plenty of water, ate a sensible diet ..avoided salt ....ruled out infection .
In the early days it was hard and lonely but good friends have stuck by and supported us .....and laughter does help . Wishing you all the very best 😊
Hi I've been there so I totally understand where your comin from he's in the right place. and I'm sure he will be ok mine was the same water meds ,no salt good diet etc but I got rushed in as I'd got worse but over 3 weeks in itu they got me to a place were I could be discharged, but it was to close for me , anyway there doing all that meds to be done I hope he's gets back on the list , I as your husband was suspended but luckily put back on n had a transplant not long after , good luck with the future, stay strong x
It is so lovley to hear this from your perspective, Blue-bells. My husband has been on the end of HE a good few times. When I was posting on here as Mellow1 (which I am not ashamed of at all) I was having a really tough time as we all do. But there were so many nice people on here who could see through my silly, selfish, confusing posts. I reached out and people supported me in the way that they could. 😘
It was so sad for my husband, too. In your post you put how lonely it made you feel. I still spend most of my days trying to make up for my erratic behaviour. My husband has made me strong and the thing is that I trust him without a doubt. 💙 A lot of my friends are gone including my family. So it's just me, Matt, my dog and you guys! 😘
You sound as though you are great for your husband, attending to him diet and medication wise.
You are SO right! Laughter is the best medicine 👍 That was one of my previous posts when I was Mellow1.
I read so much on this forum and get attached to the posts as I know the trials that everyone goes through. I didn't realize you had experienced H.E. I'm so sorry to hear about that. I have read your posts throughout my time on here...to be honest I am very confused. I thought when you were Mellow1, as Matt007 posted you had just started drinking again. I guess I realize now you were suffering from H.E. So please if you could give some advice on how going forward to differentiate the difference between drinking and H.E. that would be so helpful. Hope you're well.
Thank you for your lovley and honest post. Matt is going to post on here as he saw me go through it and is able to clarify the differences 👍. He will be speaking about my indivual situation which may not be the same as the next person.💙
In terms of going forward, I'll get back to you because it will take some thinking if you don't mind . . and these days thinking is now hard work because of this disease! 😤. 😘
Thank you for your reply. As I read every post and take to heart all of them. I read your post about not sleeping as well...trying to give good advice on that... I have none. Lol. When I don't sleep I drink chamomile tea. I think it helps or I just get so exhausted from making it that it helps at 3am haha. Anyway...thanks for the response and I am in America so when you can't sleep phone away as we are a day behind lol
From experience I would say that the HE is different. When He caused by General toxin build up it is quite mild, eg going to the kitchen and white feather forgetting what she has gone for, and on the occasion caused by a lapse with alcohol the HE is extreme with mass confusion and behavior, normal HE as I would call it is easier to help with, alcohol enduced HE is a nightmare.
I guess every one's journey is unique, is the first thing to say........my HE was on a bad day "total" I was liver compromised due to PBC (not alcohol) so my really bad HE days were just ammonia toxicity due to liver / fluid / what ever? mass confusion, incredibly odd behaviour, which I can look back on, recall how it felt at the time, and shake my head in disbelief that I actually behaved as I did....... I could be downright unpleasant (to be fair usually kicked off by some odd issue aimed at me) but then I would take off into another world........at the risk of boring people (stop reading now if you want!)
I was out for a meal in hotel we were at as I had a transplant meeting at hospital (I live 220 miles from centre) with wife, 2 daughters (18ish) and me, I have some zero alchol cider and ask at table if its ok for me to drink this (as they do not have any) willing to pay "corkage" and explained my reason for not drinking... the manageress said NO!
I asked politley a second time, but firmly! again NO! so I the fracas that ensued caused us to leave the restraunt, I was razor tounged with the manageress, and spent the next 3 hours arguing with her in reception, she was in tears, my kids were in tears, my wife was trying to drag me away, it was a total disaster, I ended up sipping cold tea from a cider bottle in reception as a "challenge" to manageress to call the police!! everyone in the hoptel could see this kicking off, I work in a hotel that I own!! I really do know how to behave!! (I also know unfortunatley how a manageress should have behaved) not one of my proudest moments! but as I saw it at the time, the manageress should have said yes! once she tipped me over, I was on it and I had no inhibitions to hold me back.......I did not care what anyone (family of strangers) thought of me, I was away.....the next day I crept out of the hotel never to return.....
There are so many of us living the same life, coping with haunting memories of how we behaved (that's if we can remember) Matt has not told me everything I have done but waits for me to ask. Hearing the truth about how I've been hurts, not only me but Matt an awful lot, but it shows how far Matt and I have come. It is the worst thing not remembering and not having the balls to ask.
Thank you Hidden for your continued support. Everyone is great.
I sure hope things get better for you and fast! You deserve some good news...and your husband is lucky to have you! When I think of people suffering with HE alone, well, it's really scary.
I'll be thinking of you both and sending good vibes!
You have been so great and understanding to me throughout my time on here! A BIG thank you to you! 🌟
I'm pleased many of you remember me as mellow1 and I hope that you can sense some improvements?! 😘 I'm totally tea total and am proud to say that I don't drink. I am getting stronger in myself. Being born again is not thay bad is it! (Fingers crossed!)
Hi ive had one episode encephalopathy its not nice you know your doing things wrong but still do it ,ihad a tips took best part of year to kick in ive been waiting 4 years for transplant , had bad colitus which is knocking the liver , keep positive thinking regards to you and husband
Thanks for your message, have you had your TIPS checked at all? It's just my husband had the procedure 6 years ago and it's never been reviewed ...just wondered , thanks 😊
Know exactly how you all feeling, I have had 4th episode of HE it was the worst never been so afraid in my life the fear was dreadful, I seem to only get it when in hospital and infections few weeks ago was admitted to hospital with sepsis I think that made the HE worse as with sepsis that causes confusion as well to be released I had to have a assessment from a physicist I was really upset about that as it made me feel as if I was crazy, on tablets and lactolouse now so hoping it can be controlled. Annette
Thanks just out of hospital again another.bad episode
Take care Annette my husband has been discharged from hospital as well, whilst he was being treated for HE he took a stroke which has affected short term memory ....we will see what the next few weeks bring its a worrying time x
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