Hi! I'm a 47YO female who has never smoked, vaped, or inhaled toxic fumes. About 3 years ago, I started coughing. I was told it was allergies but after the cough continued, I went to an allergist. Although I've never has asthma, we did try 3 different inhalers to no avail- Trelegy, Spiriva, & Breo . Finally, I was sent to see a pulmonologist & he sent me in for a PFT. The FEV/FVC1 score indicated that my lung function was 31% predicted. My pulmonologist told me that she suspects bronchiolitis obliterans. I've had my chronic cough for nearly three years. Now I get shortness of breath with very little exertion, fatigue (which also feels chronic at times), & I'm losing weight. I started azithromycin in late March.

The quest to get a final diagnosis has been overwhelming. In about 2 weeks, I'm going to an interstitial lung center where she referred me for a 2nd opinion. Part of my story is that I was referred to a lung transplant team about 2 months ago, and even though they deemed it's too early for a transplant, one of the specialists showed me the air trapping in my lungs that is compressing my diaphragm. And I was told that it's not a need for more oxygen causing my SOB, it's air trapping.

My oxygen saturation never drops. It remains consistently around 98-100. I started rehab about 2.5 months ago. I was going 2x a week but because of my fatigue, and the fact that I'm losing weight, I've started going just once a week. I eat cough drops all day, every day to help my cough & to help me clear my lungs. Sometimes I cough so hard that I get a brief headache.

Other times, I cough so hard until I gagged, spit up a bit, & just get totally wiped out. I'd like to connect with others who've had a similar experience, learn what the process of getting a diagnosis has been like for you, & learn more about the symptoms you have.

My pulmonologist wants me to get a surgical biopsy to determine pathology. But because I live in an area where there isn't a specialist who can perform the procedure, I'm left to get a biopsy at one of the three medical universities she's referred me to. And I'm hoping one of them will. The ILC does conduct surgical biopsies. Apparently, the obstruction is so severe that I can't get a typical bronchoscopy. I have to get one that is a bit more extensive. Can anyone relate? Does anyone have any thoughts on whether my symptoms sound similar to those who also have BO. Thanks for considering.