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popcorn lung: what it feels like
7 minute read
william tuer was diagnosed with bronchiolitis obliterans in august of 2020. supplied
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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.
william tuer sat down with healthing to talk about how his health-care team is managing both his rheumatoid arthritis and bronchiolitis obliterans, being accepted to the alberta lung transplant program, and his new puppy.
what led to your bronchiolitis obliterans diagnosis?
i was diagnosed with rheumatoid arthritis few years earlier, so about four or five years preceding the diagnosis of the bronchiolitis obliterans. over a very short period of time, i noticed just a very sharp change in terms of getting some shortness of breath symptoms. just to put it in context, in july of 2020 — right after the covid-19 pandemic started — i was able to go on up to 10-kilometre-long hikes. by the next month, i was having difficulty even just walking up the stairs. as soon as i noticed these symptoms, i [knew i] needed to pause and figure out what was going on, which led me to reach out to my doctors.
the decline happened over a period of roughly three to four weeks and, during that period, things were deteriorating very quickly on almost a week-to-week basis. it took a little bit of time to start treating it just because we weren’t sure exactly what was happening. at first, we thought it may be a side effect of [a new medication i was on], but when that [wasn’t the case], we explored a few other things.
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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?
the diagnosis came right at the end of august 2020. i had gone through the pulmonary function testing and was waiting for the results. that day i was at the hospital getting a ct scan, as i made my way home, i got a call from the respirologist who basically said, pack your bags, you have to go to the hospital.
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.
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is it connected to your rheumatoid arthritis or is it something separate?
from what i’ve heard it’s not possible to conclusively say that is the cause of it, because there are a few different causes of the bronchiolitis obliterans. but it is believed that rheumatoid arthritis is the primary mechanism that’s contributing to it.
i think it’s also possible to get it from vaping, which i don’t do. i was asked if i was a smoker a lot, especially in the early stages of the evaluation. i’m not.
is there a treatment?
popcorn lung is a degenerative condition, so the goal of treatment is mostly to stabilize things, prevent further damage and try to keep my lungs in the best shape possible.
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.
i was also taking an immunosuppressant called rituximab, which targets bronchiolitis obliterans as well as the rheumatoid arthritis. the idea is if we can get the rheumatoid arthritis under control, then hopefully it will minimize the impacts of the bronchiolitis obliterans.
because of all the side effects, there’s a bunch of other medications i take as well. i had three different puffers, two different antibiotics because i’m more prone to infection, and blood pressure medication. i was also taking singulair (for asthma) which is to open your airways as much as possible.
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]
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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?
at that first hospital stay i was asking what’s the worst-case scenario. basically, they said it would be a lung transplant. you never know what could happen, but that was probably the path that i would be going down.
i was referred to the lung transplant program here in alberta and i’ve now been in the program for almost two years. it starts out with an initial consultation and then you go through what they call a workup, which is basically a series of testing that covers all aspects of the body to assess your overall health and the psychological side as well. [you meet] with psychiatrists to assess your capability of following what would be a very strict regimen pre- and post-transplant.
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?
for me the biggest factor is the support of family and friends. my family and my fiancée have been very supportive throughout the whole journey since the beginning, and so that’s carried a lot of weight. and then, aside from that, just slowly learning how to adapt to my new capabilities and trying to find joy in things and maximize that as much as you can.
i’ve always loved hockey and sports in general since i was a kid, and even though i’m not able to play anymore i still get to watch and be passionate about the game and listen to podcasts.
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what do you do now in your life that brings you joy?
i would say sports are a huge part of my life. also getting to see family and friends as much as i can is huge as well.
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.
readers interested in learning more about popcorn lung can reach out to the lung association and check out the american lung association.
emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on instagram and twitter @jonesyjourn.
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