Hepatic encephalopathy and cirrhosis

[tg086]

Hi all

This is my first time posting having found the posts on here really supportive. My dad is in hospital with hepatic encephalopathy. This is the first time. He has alcohol related liver cirrohsis, ascites, electrolyte problems, he's just had 2 varices banded. He is hardly eating anything and he is on an NG tube. They are pushing lactulose and enemas to clear the encephalopathy.

It's a cruel time as we cannot see him and he is still confused. I dont know how long it will take to recover, it's already been one week. Any support or advice from others that have experienced this condition would be great. We just want him home soon.

Trishna

[AyrshireK]

Sorry to hear your dad is so poorly. Hopefully they get his condition stabilized soon.

If you've not already seen it then the British Liver Trust has an excellent page all about HE including a patient passport which helps with monitoring going forward.

britishlivertrust.org.uk/in...

Katie

[Hidden]

Good morning tg086,

Sorry to hear about your dad. It is very diificult just now as there is minimal hopsital visiting . Do keep in close contact with your Dads hopsital team, I am sure they will answer your questions as best they can.

As AyrshireK has kindly already shared the British Liver trust information on HE, I will simply offer the helpline number - 0800 652 7330 Mon-Fri 10am-3pm.

Do feel free to call the nurse specialists for support.

Take care,

Trust9

[Lladro]

Hi tg086, I had the same as your dad but had 9 varices banded and various other issues, HE is a bit scary but he will be getting the best care. I’m 53 and it was this time 2 years ago it all happened and people are amazed at how well I look and feel. A lot of my strength came from the 3 other ‘roommates’ I had so he won’t be alone, keep strong because he will need your strength and positivity when you can finally visit. I feel for you as I find this illness isn’t understood by many and isn’t that common, I feel very frustrated by how I am judged by people. I wish you and your dad well. Do read the links you are given on here as they are extremely helpful and informative. Take care.

[tg086]

Thank you all for your replies.

A week on following his deterioration, he seems to have dipped again. Today he was only opening his eyes to us on the phone. So upsetting.

We have to wait until tommorrow for the doctors to review him, we are just praying for him to improve. Maybe they can up his laxatives further.

Trishna

[Bellarman]

Hi I know how you feel, I went through the exact same thing before my liver transplant in 2018, I suffered for 17years, there were lots of times I didn't want to go on, but if you have an inner feeling that you want a better life and you have a good partner or family members who can believe in you as person it certainly can help, a lot of it is self belief that something better is around the corner, yes its very hard, I actually went through Encepalopic coma on 2 occasions and with my partner by my side I managed to get through each one. I know that all sounds a bit scary, but there will be better times ahead, and yes it takes a lot of different types of laxatives to help get rid of the ammonia out of body that causes the Encephalopathy, yes it's a lot toilet stops when ur out and about but it really does help and after a while you get to know the symptoms coming on, so lots of water too and short walks every day to get ur bowels going, I hope all that does help and I hope father can get through it and understand every bit of advice is probably good advice.

[Jason68]

Hi, I am 9 years post transplant when out of the blue I was struck by HE. It happened on holiday in Spain and there health care had no idea what was going on. Long story short I was in and out of comas for 3 months got pneumonia twice etc. When a moment of clarity was available we flew back to UK who diagnosis the issue straight away. A blood clot in my portal vain.

Since coming out of hospital in December I have had one moment of HE after being prescribed pain killings for a fracture in my back, did not like my existing meds. Since then I take my medication and ensure I have the appropriate amount of daily stools. This can impact on life as when you need you need. But no to date touch wood any HE. My message is eat well lots of water take meds and gey the lactolose right and life ain't to bad. Hopefully may get surgical assistance, but with Covid well ???

But life can go on.

Good luck.

[tg086]

Thank you so much, sharing your stories has given me so much hope and encouragement at this difficult time.

[tg086]

Hi I thought I'd share an update.

My dad took a turn last week and he became very drowsy again. The doctors said he had got hospital acquired pneumonia and again it was very serious.

He has however started to get better the last few days, the lactulose has kicked in, he is less drowsy, talking (confused!) but we are hopeful he is on the mend.

It's been a rollercoaster.