Does anyone have Interstitial lung disease/copd

Posted by lilly71 @lilly71, Mar 7 2:56am

I have Asthma, COPD, interstitial lung disease, and lung mass.
I use Trelegy Ellipta inhaler, which was working really good. Then about a month or so , I start getting short aired going up my stairs,beith light exercises. My phlym is thick. Ive had a chronic cough for years, I've never found a reason for it.
Interstitial lung disease, there are so many types, does it all have scaring of the lung? I'm afraid of pulmonary fibrosis, My brother in law died from that. It's a horrible death. He literally suffercaited.
Guess I'm just asking, can lung disease be quite for awhile and grow silently, then turn up being bad?

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suzcape | @suzcape | Mar 9 12:35pm

In reply to @mommarsh "Have your doctor refer you to pulmonary physical therapy. Very helpful." + (show)

I agree, life changer for me. Diaphragm breathing, exercise sources, diet helped immensely. IPF Diag 2020 - bout of oxygen 24/7 for few months - back to rehab and weaned off oxygen in few in months of practicing what they offer. We have to help ourselves the best we can with sound knowledge. Rocky road but the sun still shines upon us, encouraging us to enjoy the good days. Bless us all.

cameron747 | @cameron747 | Mar 10 4:25pm

In reply to @mommarsh "I am surprised you aren’t on any meds? Not sure how I got this, one theory..." + (show)

I don't know that ILD may be dormant or silent but it can be quiescent. I was diagnosed in Aug 2022. Over time I did four completely normal PFTs. Then, in Nov 2024 something triggered a flare. In a matter of days I went from being a healthy, very active 71-year old with NO medical conditions to being bed-ridden. I spent 55 days in hospital followed by 25 days in physical rehab. I have lost 55% of my lung function, as well as losing all the strength I ever had. I could not walk 120' without having to stop for a rest. I could not stand up to pee. I could not pick up seven pounds.
I am recovering now and I am in a very demanding pulmonary rehab program but I am a shadow of what I used to be.
And it's all because of that trigger, whatever it was. So the answer to the question is, even if ILD doesn't lay there dormant, all it takes is that one trigger to set it off. The results can be catastrophic. They were for me.

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