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Interstitial Lung Disease and Autoimmune Diseases
Lung Health | Last Active: Mar 23 10:08am | Replies (68)Comment receiving replies
@rbear Thank you so much for your reply. It is somewhat comforting to know that I am not alone...and to communicate with someone who understands. It seems impossible for anyone without some experience of these diseases to have an understanding.
I have had a chronic cough for 25 years, invesitgations confirmed asthma after some years, and then Bronchiecestasis about 10 or 12 years ago, reflux and the zillion other aging issues. I am 75 shortly and have been pretty active and fit and moving at a pace most of my life...so to have another lung condition added is hard to take.
However SOB is something I have experienced on and off - remember feeling a band around my chest when I was 18 - Dr prescribed Valium, which my boyfriend threw in the bin. When over that side of the county recently I had the same feeling which was relieved by an antihistamine...so who knows what was causing that back then.
I have gone off the Symbicort and PPIs which were prescribed about 8 years ago and for the last 3 - 4 years have been nebulising hypertonic saline and doing airways clearance daily to reduce the increasing amounts of mucus and decrease the cough. I have over the last year or so been clearing up to 3 cups of mucus a day. It just seems to keep increasing! I always thought it was the Bronchiecestasis but the specialists feel either asthma, post nasal drip, reflux possibly. Symbicort didn't help the Bronc so why take it! I have been back on it the last 5 months because of the sudden and ongoing episodes of SOB.
I now have to do some serious addressing of reflux on top of eating early, lying on side etc. Had tried short bed wedges, but not comfortable, so going for a full length one.
May I ask where you live? Narelle
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@narelled23 I’m sorry you’ve been suffering from all of this for such a long time. I know how scary it can be. I found myself in difficult to control catastrophe loops. Seeing a therapist helped me. But I’m glad you’re digging in and making noise about it! I’m 43, I live in Minnesota. I used to be healthy and active(ran 5ks and lifted weights 2-4 times a week). One tip I will give you that helped me focus and get organized in my Dr appts . I used Chat GPT so that I can present my symptoms in a more organized and concise way and ask targeted questions (this is not “Dr google”btw). I came prepared with a printed out medical summary and timeline of symptoms. It was after I gave my Dr my print out that things got way more focused and urgent. Later I would upload my test results to chat gpt to get interpretations as things began to escalate. After several CT scans, PFT’s, 6 min walk, Bronchoscopy and the most extensive blood tests I’ve ever encountered that’s how I got my diagnoses. From what I understand I’m a pretty rare case but, my diagnosis really takes some digging and they need to know what they’re looking for. From the time I was told I had ILD to my diagnoses it took a good 4-6weeks. Which felt like an eternity at the time but understanding what others have endured that’s probably fairly quick. I was diagnosed at the University of Minnesota Fairview ILD clinic. Couldn’t be happier with the care I’ve gotten there. Although my symptoms have improved a lot I still have this nervous’s that I could flare and regress. I follow my Dr orders, take my meds, monitor my symptoms and enjoy life the best I can. None of us knows how much time we have left and I think that’s by design so that we make this precious gift we’ve been given count. So that’s what I’m resolved to do:) Hang in there!