End Stage Liver Disease

[Flonightingale]

Anyone else here who's partner has End stage liver disease and hepatic encephalopathy?

[Positive001]

As your husband is in hospital, he will be receiving treatment for HE and any other symptoms he is displaying with ESLD. Get as much info from his team about onward care when he is discharged. But stick around as there will be help and support for you both on this forum.

All the best.

Laura

[Suduko]

Hi I was diagnosed with end stage 4 liver cirrhosis last July I had my life saved 3times and was in hospital for 3 months as an outpatient I had 2 endoscopy banding done and a third showed they had shrank. I was supposed to have endoscopy yesterday but told it was no longer needed. I saw my liver nurse 2 weeks ago and my liver has gone from decompensated to compensate which I am over the moon with as coming out of hospital last October I was still very poorly but with taking my meds and most important lactulous which got rid of HE and now keeps your bowels working which get rid of the toxins from the HE. I wish you and your partner well.

[Flonightingale in reply to Suduko]

He was also diagnosed last July. Has been sober since then. He has been discharged. Now on lactulose and Rifaximin to help control the HE. Thank you for your comments.

[Lola1977 in reply to Suduko]

Pardon are there any meds you take besides Rifaxamin and Lactulose? Thank you

[Flonightingale in reply to Lola1977]

Hi, yes he takes lots of meds following a bilateral brain bleed he had in 2017 before we met. Propranolol, Pregabalin, Thiamine, Spironolactone, Folic Acid, Ferrous Sulphate.

[Lola1977 in reply to Flonightingale]

Thank you very much

[Suduko in reply to Lola1977]

Hi yes I take thiamine folic acid also taking other meds which I take before I had cirrhosis

[jps23]

Yes my husband does. He was diagnosed in August and is now on transplant list. He's not allowed to drive so unable to work. After 2 stays in hospital at the beginning I made sure they did not discharge him until we had a care plan in place and a way of contacting the liver team at our local hospital. I do believe that my insistence got him the transfer to the Royal Free hospital quicker than normal. I also insisted that the gp calls every week without me having to make an appointment all the time.

The HE is very scary but you need to get him to drink plenty of water and keep his bowels moving 2-3 times a day.

My husband is on 10 tablets a day as well as lactose and protein drinks.

Hope your partner is getting good care.

Best wishes to you ❤

[Flonightingale in reply to jps23]

Thank you so much for your response. He has been discharged and I have a copy of his notes. Now been prescribed Lactulose and Rifaximin.

[Hidden]

Hi Flonightingale and welcome to this friendly forum. You shall find lots of people who can offer you support and advice but I'll attach links to the British Liver Trust information with regards to HE which you may find helpful:

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/wp...

britishlivertrust.org.uk/do...

Warmest wishes

Trust10