popcorn lung: what it feels like

bronchiolitis obliterans is a rare, progressive disorder that results in the inflammation and scarring of the bronchioles — small airways in the lungs . also known as popcorn lung, it was initially discovered in workers of a microwave popcorn manufacturing plant, who were inhaling the flavouring compound diacetyl. outside of inhaled toxins, developing the condition is also linked to autoimmune disorders — particularly rheumatoid arthritis — and being the recipient of a lung transplant.

patients with bronchiolitis obliterans may experience shortness of breath, tiredness, wheezing and coughing. symptoms can be managed with steroids for inflammation, inhalers, oxygen therapy and, in extreme cases, a lung transplant.

what led to your bronchiolitis obliterans diagnosis? 

i went for pulmonary function testing, which is basically a comprehensive breathing test that assesses your lung capacity using exercises like breathing in, breathing out, holding your breath, blowing out as much breath as possible. after that, i ended up in the emergency room because i was having chest pains. [the chest pains] were later attributed to the test itself, which is fairly rigorous.  

from there i did all the standardized kinds of tests: ct scan, ecg, ekg, blood work, and then i was sent home. while i waited for the diagnosis, my symptoms were deteriorating and it was becoming more and more difficult to even shower and get dressed independently. at that time, i was just working from home, sitting at my desk so i didn’t have to move around too much. but when i did, it was definitely a challenge.  

when did you get the diagnosis? 

we didn’t really have a firm diagnosis at that point, so i went through what’s known as a bronchoscopy exam (a minor procedure where a scope/camera is inserted into your lungs) and continued monitoring of vitals, blood work, and blood gas testing (which measures the oxygen saturation in your blood). they said my lung capacity at that point was somewhere around 25 per cent.  

when you hear this rare diagnosis, what goes through your head?

it was completely out of left field for sure, not something that i had ever heard of. [i had] never experienced any lung-related conditions before; i never really had any issues with breathing or asthma as a kid, so it was all very foreign. then, to find out that you’re diagnosed with something that you’ve never even heard of before is definitely … surprising, i guess, is the right word.  

is it connected to your rheumatoid arthritis or is it something separate? 

is there a treatment? 

the first thing that i started on was prednisone, a corticosteroid. i was taking the maximum adult dose which has a lot of nasty side effects, like for example, my face almost tripled in size — it looked like a balloon. eventually though, i was able to taper off once i had achieved a reasonable degree of stabilization.

do you have to be extra careful about germs now that you’re taking rituximab? 

i’ve been erring on the side of caution since i was first diagnosed with rheumatoid arthritis because i’ve gone through a number of different biologic treatments and immunosuppressants. i need to stay on the safe side at the best of times.  in december [2021] i was in the hospital for five days with pneumonia and then within two weeks of getting out i got covid-19.

since this is a progressive condition, do you have concerns for the future? 

ultimately, i’ve completed that initial assessment and i’ve been accepted to the program, but because i don’t require supplemental oxygen at this point i’m currently on the inactive list. i won’t be placed on any sort of active list until i’m on supplemental oxygen, which would mean that things have deteriorated.  

this is a lot to manage, especially in such a short time frame. how do you cope with it all? 

what do you do now in your life that brings you joy? 

we also got a puppy who’s now almost a year and a half, and that’s been one of the biggest things to bring me joy as well. just having the camaraderie at home when i’m working and getting to spend time with him. even from a from a physical standpoint, even though i’m not really able to walk him, i still have to move around the house and make sure that he’s not eating or chewing on something he shouldn’t.