Any experiences with pulmonary fibrosis?

[TheThinWhiteDutchess]

Hi

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.

Sorry to hear about your mum. There is a Facebook Group for pulmonary fibrosis with very knowledgeable people going through the same as you and your mum. Here is a link - there is lots of information and support

(20+) Pulmonary Fibrosis UK | Facebook

Also Action Pulmonary Fibrosis has lots of info and support:
Home (actionpf.org)

My ex mil had it, she was 5 years from diagnosis to her passing away. There was oxygen installed in the house & she had portable bottles to use if she went out. She managed to go away on several holidays & managed fairly well until the last year, she had a lot of steroids which helped her breathing but ruined her bones.