January 23, 2021 at 8:05 am #26971
I recently received the results of my lung biopsy, “Airway centered interstitial fibrosis with extensive bronchiolization and thickening of blood vessels” and will be starting Ofev soon. Concern about my lungs go back about 2 1/2 years when I had a major respiratory viral infection that took many weeks to resolve. CT scans showed ground glass opacities that didn’t resolve and a bronchoscopy was inconclusive so eventually we completed a surgical biopsy. The pandemic and other health issues slowed things down a bit. Fortunately I feel great today with minimal if any lung impact but it has been an interesting 12 months. About a year ago I was diagnosed with prostate cancer that was treated with radiation therapy this summer/fall. Before I started treatment, I ended up in the hospital for 11 days with a flareup of catastrophic anti-phospholipid syndrome, a blood disorder that in some rare cases can lead to simultaneous clotting and bleeding. It is an auto immune related disorder. There was major inflammation of my lungs during that episode but that has mostly resolved.
I’m wondering if anyone else has received a diagnosis of airway scarring that has not been linked to occupational or environmental-based exposure? Although I don’t expect to find any issues, I recently had a comprehensive series of air quality tests done at my home, where I have worked for most of the past year.
Other than a few potential very short term occupational exposures to silica, possibly asbestos, etc I have never worked in an environment where I have been subjected to chronic conditions that would typically cause this type of scarring. based on what I read, the viral infection by itself may explain the scarring found in the biopsy.
I realize that I may never know the cause of my scarring and the progression seems to be slow.
Any input that you may have would be greatly appreciated. Thank you
- This topic was modified 1 year, 6 months ago by Charlene Marshall. Reason: formatting to remove code
January 24, 2021 at 8:28 am #26982Charlene MarshallKeymaster
Good Morning Bob,
Thanks for writing and sharing with us the results of your biopsy, though so sorry you’re dealing with a fibrotic lung disease and have pulmonary scarring. I didn’t have a lung biopsy for my diagnosis, and don’t recall being told my scarring was in the “airway”, I wonder if this differs from being in the lungs? My diagnosis hasn’t been linked to any type of exposure, especially since I was 28 when I was diagnosed. I always lived in clean home with no known household hazards, I wasn’t around smokers or any environmental exposures either. I was an avid swimmer though, and spent a lot of time in chlorine pools but I can’t imagine that has any link. I’m not sure, I do want to do some research around that though, as I also have no history of lung disease in my family. Your experience could be linked to the viral issue, I suppose…. we’re learning more and more about that amid the COVID-19 virus. Please do let us know if you concretely link anything to your diagnosis. Receiving an “idiopathic” (ie. cause unknown) diagnosis can be so frustrating! I remember the first year, it nearly killed me trying to find out why I had this, until I gave up.
Take good care and thanks for writing!
January 24, 2021 at 8:59 am #26984
I’ll let know if I learn more. I suspect there are a lot of things that I’ll never know for sure.
January 26, 2021 at 4:22 pm #27011
February 4, 2021 at 5:14 am #27145Susan Ferreira AtencioParticipant
Hello Bob….I am very interested in your post of Jan 23 mentioning the episode with the autoimmune rare blood disease. I was diagnosed this past October with IPF ….my cough started ten years ago……with no other symptoms
until the shortness of breath started about a year ago. I was also diagnosed with a rare blood disorder…aplastic anemia….. also about ten years ago. It was severe but I am now in remission for that although I still have it. I believe that is what started my IPF…..Of course it can not be proven hence the IPF.
I seem to be moving very quickly after my diagnosis….O2 almost all the time…Breathing has become very difficult because I often breathe thru my mouth if I am having trouble and therefore not getting the O2…I have started the Ofev about two weeks ago……I was afraid of all the side effects so I postponed until after the holidays . To my surprise I have had no side effects other than an occasional mild headache, an occasional feeling of nausea and dizziness that only lasts moments.
Mostly I would like to know about that rare autoimmune blood disorder……do you have it still……?
February 4, 2021 at 2:37 pm #27157
Susan – my blood disorder is known as anti-phospholipid syndrome. it makes me prone to clotting so I have been on blood thinners for 20+ years. other than the “catastrophic“ event that I had this summer it has not impacted me other than that I have been taking blood thinners since I was diagnosed. I try to stick with a relatively consistent diet but it hasn’t really been an issue.
Thus far Ofev hasn’t been a big issue for me but I am paying a bit more attention to diet.
Charlene – I had the indoor air quality work done by a firm that I’ve worked with in the past on building demolition related work. I’m not in the demolition business but work as an engineer and I have been involved in some past demolition projects. The person who did the sampling is an industrial hygienist and has done work like this in the past. The results have come in and most everything was typical, mold, dust, etc. I also had some wall materials sampled for asbestos and vermiculite because I had done some reconstruction work a couple of years ago. There were no issues there.
One item that might be a concern is “carbon black“ which is soot. The levels in my bedroom came in higher than the OSHA workplace standard and quite a bit higher than what several states recommend as residential standards. We are going to do some additional sampling to confirm these results. The only potential source that I know of is our gas fired boiler exhaust which exits the exterior wall not too far from our bedroom window. we have never seen any soot or been concerned but we are still going to check this out based on the test results. As a minimum, I am probably going to look at installing a high performance filtration system in our bedroom area and possibly changing out the heating system so that there is more exchange of outside air. This may not have created my problem, but I am probably now more prone to air quality issues than others so cleaning up things couldn’t hurt and might help.
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