Any experiences with pulmonary fibrosis?

[TheThinWhiteDutchess]

Posting here for traffic...

My Mum has idiopathic pulmonary fibrosis. This time last year she was doing ok and managing to get out and about just getting a bit tired.
Over the summer she had a course of steroids and since she came off them in October she has had extreme fatigue. She is now using oxygen cannisters and has lost a lot of weight. She is pretty much house and sometimes bed-bound.

We were all hoping that it was just coming off the steroids that made her so tired but this has been going on for so long that I am wondering if this is now 'it' and she will continue to decline until she passes.

I know that IPF is different from person to person, but I'd be interested to hear people's experiences. Really I'm trying to come to terms with the most likely outcome

Hi,
Not sure how old this post is but I also came here looking for advice on same thing.
Let me know if you're still here

Hi, I'm sorry to say that Mum died in June. So sadly it was as I'd suspected, that it was the beginning of the end.
I think she had some undiagnosed food intolerances that made it extra difficult to build herself up and that made her frail.

very sorry to hear that

Thanks @scryingeyes I hope you get closer to what you're looking for. It does sound like sometimes IPF can progress quickly.
I'm a member of 'Pulmonary Fibrosis UK' on Facebook and that has been very helpful.

Yes my dad had it for years without any ill effects. He had a chest infection which he couldn’t shake, but it turned out it was actually lung cancer he had. I’ve learnt that is important to advocate for them if things don’t get better as it isn’t always IPF that is the cause of their ill health!