ILD now classed as IPF

[Helsbells1]

Hey folks,

Got a bit of a surprise when I received a letter from my Respiratory Consultant stating I have IPF. Only diagnosed with ILD a few weeks ago. Can anyone tell me what the difference is? Am due to start Pirfenidone in next few days. Is anyone else taking it? How are you finding it? My head is all over the place too. I am becoming quite panicky, waking during night feeling like I am suffocating but really imagining it. How do you guys cope? Any advice gratefully received. H.

[Hidden]

Hi Helsbells1. ILD is a classification which covers many lung diseases, one of which if pulmonary fibrosis. I do wish that doctors would explain to their patients which group their condition belongs to and would be consistent in the term which they use. I’m afraid that I can’t advise you about living with it as I have bronchiectasis but hopefully someone who has IPF will be along to support you.

[Helsbells1 in reply to Hidden]

Thanks littlepom.

[Offcut]

webmd.com/lung/interstitial...

The link might help explain all the different types of ILD that are all part of a group? I Have RLD, COPD, PH and fibrosis Plus a few other things to upset the doctors?

I have found distraction and mindfulness Techniques a great help

. And keep a PMA.

BE Well

[Helsbells1 in reply to Offcut]

Thanks Offcut. I will have a look at that.

[Hidden]

Go to pulmonary fibrosis news, they have a forum you can join. Also, you can go to team inspire they have one as well. They can help you get more information on your diagnosis. It's ok to feel the way you are, just try and be easy on yourself.

[Helsbells1]

Thanks Rigcu11. I will check those out.