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How did you handle the first time your disease got worse?
Hello Everyone!
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<div>I recently was in the ER because of breathlessness after a long walk (5 miles). This was a first for me, until recently I was still jogging. I have Scleroderma- ILD and was diagnosed two years ago, 48 years old. My fibrosis had been diagnosed as mild for the last two years, but during the ER visit I was told that the CT scan now said mild to “moderate” fibrosis and now I had Bronchiestasis.</div>
<div>Backstory- I’ve been living in cold weather the last several months for work and was walking/jogging without issue, I came home to humid 80 degree weather, and this is where I landed in the ER.</div>
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<div>I’ve been back two weeks and took a PFT today. The value that took a nosedive from my last PFT six months ago was the ERV- Expiratory Reserve Volume and the</div>
<div> FRCpl- Functional Residual Capacity by plergysmography. They gave me a nebulizer treatment today and this didn’t change my numbers, so I don’t believe it’s asthma or allergies (not sure though, will ask my Pulmonologists this week when I see her).</div>
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<div>Since I’ve returned home I’ve felt like something has a hold of my lungs and I can’t breath in fully. I did not feel this way when I was in the cold weather just two weeks ago, it’s like it happened overnight.</div>
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<div>I don’t know anyone else with pulmonary fibrosis so you can imagine this event has left me feeling scared and sad and imagining that the fibrosis has aggressively progressed in the last six months. I am supposed to get married in four months but instead of thinking about wedding dresses I’m thinking about wills..</div>
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<div><span style=”font-family: -apple-system-body;”>Does anyone have any advice on how they handled that first time when things took a turn for the worse? Was it related to the fibrosis advancing, or what I’ve heard of as an “exacerbation” (what is that exactly)? </span></div>
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<div><span style=”font-family: -apple-system-body;”>Did things get better after a few weeks or months, or stay stable? Did your breathing abilities ever get better, did your numbers go back up?</span></div>
<div><span style=”font-family: -apple-system-body;”>If things did in fact get worse, how did you accept that and keep living your best life? </span></div>
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<div><span style=”font-family: -apple-system-body;”>Thank you in advance for your wisdom! </span></div>
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