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.

[TheVillageShop]

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)

[Nat6999]

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.