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Hello. I'm new here. I haven't officially been diagnosed with Pulmonay Fibrosis, but I have worsening breathing issues. I have had worsening exhaled breathing from 2020 after the flu, but I think my lung was damaged from my recalled CPAP machine. I was 47 years old when I started using the Philips CPAP machine and now at 49 years old, my exhaled breathing has been worsening. I had a CT scan and breathing test done in December 2022, but nothing showing. My lung volume is declining, but not abnormal yet. I did get Covid in Sept 2022, which worsned my condition. I don't have a diagnosis yet and getting really frustrated with no answers. Anyone have any idea? I suspect I am developing IPF or some kind of ILD, which scares me, but I really need to know. My breathing problems do not respond to inhalers. Has anyone followed the same history as me or anything similar?
Side note: Has anyone acquired pulmonary fibrosis after using a recalled CPAP machine?
Replies to "Hello. I'm new here. I haven't officially been diagnosed with Pulmonay Fibrosis, but I have worsening..."
@rkomenaka
I was recently diagnosed with Pulmonary Fibrosis and was asked about possible causes. I also had a recalled CPAP from Philips and the unit they sent me was not a quality machine. I did some research, and it sounded like CPAP Belly Syndrome that I was dealing with. My sleep center found that the replacement machine did not function correctly, and I was given a script to replace it. I now have a ResMed and there is a world of difference. Part of the CPAP Belly Syndrome is that it can cause mild lung infections. I wonder? Your history sounds similar to mine only my pulmonologist recognized it but didn't have any kind of a plan after that. His words were that medicine for this disease pretty much sucks. (His words) I've had to find a doctor with more knowledge of IPF to even begin treatment. I really wanted to get a referal to The Mayo Clinic but that isn't happenind.
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I was diagnosed in 2020 with ILD. The best advice my outstanding pulmonologist gave me was "walking is super important." I have walked every day since. I am also on Cellcept. My PFTs are normal and I feel fabulous. I may discontinue cellcept by the end of the year. There can be light at the end of the tunnel. Make sure you have a great pulmonologist!