1. < Lung Health

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?

Interested in more discussions like this? Go to the Lung Health Support Group.

suzcape | @suzcape | Mar 9 12:35pm
In reply to @mommarsh "Have your doctor refer you to pulmonary physical therapy. Very helpful." + (show)
@mommarsh

Have your doctor refer you to pulmonary physical therapy. Very helpful.

Jump to this post

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.

REPLY
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)
@mommarsh

I am surprised you aren’t on any meds? Not sure how I got this, one theory is that is was from the Phizer Covid vaccine, it’s in their list of causes.
You may want to see another Pulmonary specialist for treatment or second opinion.

Jump to this post

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.

REPLY
lilly71 | @lilly71 | Mar 21 11:30pm
In reply to @mommarsh "Have your doctor refer you to pulmonary physical therapy. Very helpful." + (show)
@mommarsh

Have your doctor refer you to pulmonary physical therapy. Very helpful.

Jump to this post

Yes I've been doing that since February of 2023
It has helped some

REPLY
dannamarie04 | @dannamarie04 | Mar 28 10:21am
In reply to @melbourneaussie69 "My mother was diagnosed with Interstitial Lung Disease (ILD) and at the time given 5 years..." + (show)
@melbourneaussie69

My mother was diagnosed with Interstitial Lung Disease (ILD) and at the time given 5 years to live, she lasted 7 years with the last two years she decided to stop taking any medication. At the time I was caught up in the fact she was so sick (the last 12 months) that unbeknown to me I was showing symptoms of ILD myself. It creeps up on you over a slow period. Two months after she passed, I was diagnosed with ILD, and things went downhill rather quickly. I woke up one day after five weeks in Intensive care unable to move. I spent five months in hospital
three of which I was pushing for a lung transplant. I was assessed and given a lung transplant and sit here four years after the transplant. It is not for everyone I must warn as the medication you take is terrible and as one of my specialists stated, "it is a palliative procedure". Statistics say 50% of recipients survive 5 years, after 10 years 87% don't make it. But I know of many cases that are in their 15th year and one case where he is in his 30th year. I can say one thing it has taught me to value things that are normally taken for granted and appreciate the little things you would normally take for granted.

Jump to this post

Hi Melbourne,

I am sorry for the loss of your mother. I know how devasting that could be. Has anyone mentioned if this is hereditary?
-Danna

REPLY
View MoreView Less
Please sign in or register to post a reply.