MIL is sick but can’t remember the name of her condition! What could this be???

[SommerbySweetheart]

Really random post. My MIL who lives very far away has called to say she has been diagnosed with a chronic liver condition. She can’t remember the name of it but said it’s begins with “Primary”. She said she has scarring on her lungs and they don’t know why. They can’t treat it but they can manage it, she says. Does anyone know what this could be? She said some of the symptoms are fatigue & feeling nauseous. Please help.

Primary biliary cirrhosis? It's not alcohol-related.

She’s not a drinker, so that makes sense.

I’m just trying to guard the seriousness as she has totally played it down but I get the feeling it’s worse than she’s letting on.

Wiki is helpful. There is medication which can be very effective and it's a condition that some people can leave with for years, but it depends on the stage. Are they going todo biopsies on the liver?

It's the stage which sheds light on the seriousness really, plus also how her bloods are when she is on the medication.

The biopsies have been done. She said they’re going to also do an MRI now (not sure why). I don’t want to dig too deep as it’s not really my place but i want to be there for support. She said they think she’s had it for years.

It's a wait and see situation for now then. It's not unusual for it to have been undiscovered for a long time. Hope it's not too advanced.

Can it be life threatening then? I’m gathering from what you’re saying it can? She’s only 62 and all of our (DH&I’s) parents have been very much fit and healthy until now so I’m feeling very concerned and worried by all of this.

Thanks for this information bastardkitty, much appreciated. It’s difficult not having all the facts and I really don’t like to ask her.

My mum has PBC, it was undiagnosed for at least 8 years they think (they looked back into her blood test results and found it on all of them). You honestly wouldn’t know she has it, once they got her settled on medication she was fine. She has 6 monthly check ups and an ultrasound once a year to monitor it.

Try not to worry. (I know it’s easier said than done).

I would try not to get too far ahead - but obviously it can be serious/life-limitating. It will also depend on response to the medication. I'm not a medic BTW, I just know a bit about this illness.

I had a similar situation with my Dad. The NHS.uk website had some really reliable information, which was so useful and meant I could find out a lot without feeling as though I was prying. It is a hard balance especially when they are in a different country.