I'm 33 years old and I've been completely confused and depressed while waiting for a diagnosis. Just thought I'd share my story, mostly just to vent and see if anyone else can relate, but also to gain some insight into what seems like probable COPD.
In April I noticed a slight wheeze at the end of a breath whenever I was lying down. This had me worried, so I booked a pulmonologist appointment, where I was given albuterol and fluticasone inhalers, then waited an agonizing two months for a PFT : FEV1 at 86%, FVC 100%, FEV1/FVC 0.70. No bronchodilator response. FEF25-75 was particularly bad, about 60% predicted. But my peak flow is consistently 120% or so.
Ever since that July PFT I've started to become short of breath and more exhausted by light exertion. The inhalers don't really seem to help. The wheeze is still there. Yesterday, I went for a methacholine challenge test, and during those dozen or so spirometry sessions, my FEV1 was consistently lower than last time, at around 82% expected. And devastatingly, the test was negative. I had no response, which all but rules out asthma.
I also had an HRCT done, which showed absolutely nothing: no air trapping on expiratory scans, and reassuringly, no emphysema.
So what else could it be? Was it a gradual decline or did something initiate all this? Some risk factors are there, but nothing obvious:
- I smoked in high school and college, but quit shortly after that when I was 24 years old. Still smoked (and vaporized) pot, but not on a super frequent basis. However, a few weeks before I noticed the wheeze, I did happen to take a bong rip that left me coughing and irritated my lungs for about an hour.
- I think I have airway reflux (LPR) and have a productive cough for a while after eating almost anything.
- I had a bad case of bronchitis in 2015 that I stubbornly waited out without taking antibiotics. Had an awful cough for about 2 months.
- Could it be indoor air pollution? During the pandemic, I cooked a lot at home and I don't have a range hood. I would have to silence the smoke alarm on a weekly basis, and the house would get quite smoky.
- I never had COVID, but I did get the Moderna vaccine right before I noticed this all starting. Could I be the one in a million person with a runaway immune response?
Also, when I listen with a stethoscope, my wheeze is pretty much constant and localized to my right upper lung. There's something going on in that spot on the right side: I feel a sensation like a right-sided airway is snapping open mid-inspiration, almost like it's blocked by mucus, even when I can't cough anything up.
All that aside, I'm very afraid of the future, given the likelihood that this is a chronic lung disease. These lung issues don't seem to be getting any better after 6 months. If anything, it's getting worse fairly rapidly. What are the chances this will get better or stabilize over the next few years? I'm at a loss and I can't stop worrying. I can't get over the fact that my lungs will never be normal again, and I can't help but second guess all the poor decisions I made that could have led to this condition. And I'm frustrated by the slowness of a real diagnosis. These past few months, I feel like I've been practically shrugged off by every doctor I've been to. At least now, after a negative methacholine test, they can finally stop treating me like a typical asthma case.
Thanks for reading. I know my numbers aren't that bad, and it's not all doom and gloom, but at age 33 it's really hard to get used to the idea of living the rest of my life with a chronic lung disease.