I am new here and I believe I have constrictive bronchiolitis. Here is my story:
I was diagnosed with Sarcoidosis in 2017 via VATS surgery. I never really understood how I got it. I originally went in to my doctor because I had bouts of GERD that woke me up at night with severe coughing which then led to a fever the next day that resolved by that night. Saw an infectious disease doctor, referred me to a pulmonologist for a lung nodule they saw on a CT. Which was how I eventually had the VATS surgery.
Fast forward a little bit I still have bouts of GERD that wake me up at night, some times so bad that I get I am coughing up gunk (think its sputum) and would hear crackles which I suppose were from my lungs (when I inhaled or exhaled). I didn't really know what was going on because usually when this happened I would cough for a little bit and the crackles and sputum would resolve after a few hours. My guess now is I was aspirating my GERD. Generally I would feel ok the following day and could continue on my with whatever I had planned. COVID Hit in 2020 so I would pretty much scared to leave my house so didn't really see my doctors in for that year.
Now in 2021 is when things turned. I started having trouble sleeping and felt just kind out of breathe unusually.I went to the hospital for a stomach issue and the CT scan they gave me had a finding of Bibislar Tree in Bud opacities. I went to my pulmonary doctor actually concerned about bronchiolitis specifically but got brushed off. Was told I had slight asthma and prescribed a new inhaler for my sarcoidosis. I then went to another pulmonary doctor with the disk from the hospital, and got told it wasn't bronchiolitis again. I had a 2 PFT's and one had a very slight obstructive pattern which had me convinced but then I had a repeat one a few weeks later that was normal. It's my sarcoidosis or something else I was told. Also got had a sleep study done and apparently had OSA event though I have never had trouble snoring before.
Fast forward 3 months, get another CT scan at ER for shortness of breath. That shows multiple nodules (ground glass opacities) with one 5 MM nodule and waxing and waning etiology
Back to pulmonary doctor - another CT scan that informs me the one nodule grew from 5 MM to 8 MM and everything else the same as the last CT from the hospital- but my pulmonary doctor again tells me its not what I think. It is my sarcoid. 2022 now.
My father passes away and even though I still feel short of breath I kind of just shut down and think its my sarcoid. Finally go back for a follow up at the end 2022 and get another CT scan. It seems the 8 MM nodule has disappeared but I have chronic and bronchietastic changes. Called my pulmonary doctor - same thing doesn't think it's anything to do with constrictive bronciolitis. So there is my story. Might have missed some things so if you have any questions please let me know. I can provide the "interpretations" for my CT scans if anyone is interested.
I am just really struggling with anxiety and depression right now. Told my wife we should sell our house and start saving all our money because I am going to be bedridden soon.
I have been off and on Breo Elipta and Arnuity Elipta (currently take this). Have taken prednisone 30 day course in 2021 and 2022 but didnt really notice a difference I think. Take omprezole for GERD.
Location Pittsburgh, PA
I guess my questions are;
Is this the death sentence I read about online?
Does anything help - medicine, vitamins, etc.?
Any specialists I should talk too?
Anything would help and if anyone wants to discuss please let me know.