Episode of Hepatic Encephalopathy

[Hc73]

Hello everyone!! I wrote a message on here a few weeks ago when my dad was diagnosed with this. Everyone was so helpful and at the moment I’m not sure who to turn to as I don’t really have anyone who can answer many questions. So to date my dads cirrhosis has changed from compensating to decompensating he’s been very poorly and had 2 hospital stays in the last 6 weeks. He is on a medley of drugs inc Rifaximin and lactulose. He was discharged a week ago and despite really good food all his drugs and he’s going to the toilet fine there really doesn’t seem to be much improvement. He’s not rambling like he was in hospital but he has no energy, sleeps all the time, has very itchy skin and generally looks very grey ( not yellow) He can talk but seems very vacant a lot of the time. We called the hospital today and spoke to his consultant who said that this was an episode of he and not much could be done just keep on doing what we are doing and he will see him this week. I’m a complete control freak and find this whole situation very hard to handle as I feel like I don’t really have a solid plan and I just wonder is this normal?

What is everyone one else’s experience?

I thought that he would return to normal and get better but that doesn’t seem to be happening.

He hasn’t drunk for 7 weeks and has no inclination to as he’s been so ill.

I know everyone is different I suppose it would just be nice to hear what the usual Recovery time is from an episode of He? Or is this it will he always be like this?

My mum died before Christmas and he has always been an active person and very mentally strong so it’s very hard to see him like this.Sorry for the long garbled message

Helen x

[AyrshireK]

I am sorry to say that Dad is very poorly just now. It's early days with the withdrawal of alcohol to see much change and to be honest the damage may well have been well and truly done already. It might be that Dad needs a prolonged hospital stay or (and I really hate to say this) but you might need to discuss end of life care with GP and consultant. At this level of damage only probably a transplant would reverse the damage done, whilst he might stabilise a bit with medical intervention you probably will not see any major improvement. The skin itching and sleeping all the time are signs he really, really isn't well.

At 70 years old and with such recent alcohol use a transplant is probably not on the cards.

The BLT has been working with GP's and the medical profession to tackle the sad issue of end of life care and you might want a little read at their page on 'Thinking Ahead - Planning for the future'. britishlivertrust.org.uk/li...

I hope you will be attending hospital with Dad for his consultation and you can ask the questions you need to.

Katie

[Hc73 in reply to AyrshireK]

Thanks Katie, I appreciate your honesty. I will definitely be attending the appointment x

[Hidden]

Hi Hc73

We are sorry to read your dad is so unwell.

Great reply from Katie below. If you would like a chat the helpline is open tomorrow 10am to 14.45.

Warm wishes

Trust1

[Hc73 in reply to Hidden]

Thank you, e have a hospital appt on Thursday with the consultant so I will write a list of questions!

[Hidden]

Hi Hc73,

I think your father's doctors might have better information. My husband is 70 now and was in liver failure shortly before he turned 68. I can only speak for us, but he is now shoveling snow and doing many other things, but it did take a while as he needed to recover from all he went through.

Hubby's doctors were insistent that on the lactulose he have at least 2 bowel movements a day to keep the ammonia at bay, which was sometimes difficult as he has never been one for 3 meals a day. Did they add B vitamins to his meds? His doctors did as that seems to be one of the things that they felt would help his recovery, but we are in the US.

Perhaps, if you can, a different doctor might be more upbeat.

Best wishes,

Mary

[jenngrady]

Quick question: Does he have Ascites? In his belly? If so, ask for a "tap" where they manually drain the fluid from his abdomen. My Dad had his first and hopefully last serious HE episode and they gave him Lactulose and Rifaxmin and it worked somewhat in the beginning but way better after being "tapped". Also make a habit of mixing in the Lactulose in drinks. It helped us a lot, it makes it not seem so medicinal and keeps things on track. If one dose doesn't work, to make two bowel movements, go for two doses. (Breakfast and Lunch beverages or Lunch and Dinner) don't forget your Rifaxmin dose and see if he improves.

[Hidden]

Hi Hc73

What you have written in your 1st post describes exactly how I was for 2 years before my transplant. I was in and out of hospital all the time because of HE, I would sit and watch TV and not know what I had just watched. I slept a lot through the day and couldn't sleep at night, I didn't get involved in conversations if I could avoid them.

Now after my transplant I'm pretty much back to my old self. One bit of advice I would give to try and avoid the HE is to drink loads of water about 3 LTRs a day, it helped me a lot and cut down on trips to A&E a lot.

Good luck Helen feel free to contact me if you have any questions you might think I might be able to help with.

[Red50]

Hi , I’m 50 years old and suffering from he, I sleep a lot and sometimes can’t even remember conversations, also the lactose just gave me diahoria. Have appointment in two weeks what can I ask the doctors for, for these symptoms. Warm wishes and hugs to you and your Dad 🤗

[Hc73]

Thanks so much for everyone’s kind words and advice. Dad is back staying with me. He seems a lot brighter than last week and interacting in conversation more which is so nice to see. I’m under no illusion that this can change with the HE. The hospital have advised him that he now shouldn’t live on his own so we are just trying to figure out what the next step should be. Thanks again Helen xx