ILD now classed as IPF: Hey folks... - Lung Conditions C...

Lung Conditions Community Forum

56,005 members66,633 posts

ILD now classed as IPF

Helsbells1 profile image
6 Replies

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.

Written by
Helsbells1 profile image
Helsbells1
To view profiles and participate in discussions please or .
Read more about...
6 Replies

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 profile image
Helsbells1 in reply to

Thanks littlepom.

Offcut profile image
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 profile image
Helsbells1 in reply to Offcut

Thanks Offcut. I will have a look at that.

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 profile image
Helsbells1

Thanks Rigcu11. I will check those out.

Not what you're looking for?

You may also like...

ILD

Hello I'm a 57 year old woman with non specific interstitial pneumonitis. This came as a huge shock...

Patient survey - IPF/ILD

Hi all, IPF Week is coming up in just under two weeks (16-24 September), and as always we’ll be...

ILD and pirfenedone

I was diagnosed with ILD two years ago after i was taken into hospital with covid, when I was given...

IPF

Hi I am new to the group my father has IPF now for over 4 years and was doing well but recently has...

IPF oxygen

Hi all hope everything is ok with you. My consultant keeps mentioning oxygen therapy but I am...