Any advice please?

New to forum and it’s been really helpful to read through the posts.

My Husband (48) was diagnosed Jan 17 with ALD but has previously had other immune conditions too. Has abstained completely from all alcohol following this date but has deteriorated in last 6 months. He now has permanent jaundice which is very bad, ascites is under control with drugs, as are his varices. Was on lactulose for suspected HE but EEG scan has come back clear so now told to stop taking.

Specialist confirmed this week that his UKELD score is 54 which having researched, seems to place him in a category where a transplant could be considered if we’re very lucky/fortunate. (Have to say this score has really worried us more than we already were).

It just feels that the Hepatologist needs so much persuasion to even get us an initial referral into the transplant clinic (now happening within the next 4 weeks).

Diet and lifestyle along with every other piece of advice being followed to the letter but does anyone have any other advice that might help us please? Thank you.

[jojokarak]

Sorry to hear about your husband's sudden decline x. And surprised it took your consultant so long to refer him. As soon as the transplant team see him and have his bloods they are the ones who will give your husband and yourself the best advice as long as you have listened to the current ones and are following the advice there is not much more anyone can say apart from him to take each day at a time. And I have never heard of anyone being told they don't suffer from h.e. from a scan it's a build up of toxins in our blood stream what causes it so I would query that one and keep your eyes and ears open for the symptoms. Which hospital have you been referred to

[Hidden in reply to jojokarak]

Thank you for replying. Sometimes the advice seems very casual. “If you don’t think the lactulose is helping, stop taking it”. Clinic was running very late and we were the last appt of the day last week so we felt rushed. I’m sure along with most, if not all that use this forum, this is the most extreme emotional rollercoaster we’ve ever experienced.

Thanks again for replying.

[jojokarak in reply to Hidden]

It sure is a rollercoaster x. The diet is the key at the moment no salt, fresh food , protein and try and avoid red meat as well ... Another trick is write the questions down as you will notice things on a daily basis but as another thing pops up we forget them I hope your next appointment goes well

[19581979]

I'm sorry to hear things are tough for you at the moment. No alcohol, healthy eating, exercise and working with the medical regarding medication are all crucial which you are doing. The only other thing is going to sound really hard to do, but please try, and that is, trying to relax and getting good quality sleep at night.

Take care

Gx