What's best??

my husband has been diagnosed with PBC. He's still undergoing tests and waiting for an endoscopy later this week. During the last couple of days, he has totally lost his appetite and feels nauseous, and sleeps all day. I'm trying to get him to a little every couple of hours (he's only had a choc digestive so far today). Any ideas?

[AyrshireK]

From reading your profile it appears your hubby already has cirrhosis so key thing now is trying to keep weight and muscle mass on. Little and often as regards food, small snacks rather than full meals is sometimes best. Low salt to prevent fluid build up. Ideally you want to get to see a liver specialist dietician for individualized advice and maybe hubby needs something to help with the nausea so a lot of things you need to discuss with his consultant.

With tests ongoing it sounds like you are still early on your journey so get yourselves a notebook to take with you to appointments. That way you can prepare for each consultation and make the most of the valuable but all too short time you have with consultant.

Jot down current medications, ALL symptoms being experienced (no matter how trivial they might sound) PLUS all the questions you want to ask - i'd be asking about anti-nausea meds perhaps, has he got Hepatic Encephalopathy (sleep problems and sleeping all the time can be symptoms of that and there are meds available to help (Lactulose & Rifaximin), ask about seeing a liver specialist dietician because diet is really important.

The BLT website has a page all about questions to ask your doctor and other stuff regarding the patient charter - what care you should receive etc. britishlivertrust.org.uk/in...

BLT website also has a page all about Primary Biliary Cholangitis and one on cirrhosis which might be useful to you in making sure you have enough information to ask pertinent questions at appointments.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

I'll ping you a little private message with some useful diet information too. My hubby has cirrhosis due to another auto immune liver disease and we've been living with that for 10+ years now.

Best wishes,

Katie

[Hidden in reply to AyrshireK]

Thank you for your advice. We are very early with his diagnosis so any advice is gratefully received. Little and often is what we are trying now. Thank you

[Kristian]

If these symptoms are new then its worth getting to see his gp just to be on the safe side. It could well just be related to his existing liver problem or it could be something new that should be treated or at least investigated further.

My general rule of thumb is, if its something new, get it checked. His medical team will want to know anyway.

There are lots of complications with liver disease, some needing quicker attention than others, so best not to leave something to chance just in case. It may be something simple and if nothing else they can give him some meds to help with the nausea. So you've not wasted anyone's time getting it checked out.

[Hidden in reply to Kristian]

Thank you. We ended up ringing 111 and he's been admitted to hospital with kidney damage. he started dialysis today.