Tales From the Shadows, Part II

To properly tell this story, we need to go back--waaay back, to when I was seven, and work our way up from there. (Warning: the background is 90% of this post.)

When I was going into the third grade, I switched schools. In my old school, recess was spent on the jungle gym or the swings or sitting in the grass. In my new school, we got a parking lot in the back. There were two options: sit on the side and be bored, or play tag. 

I noticed then that I had trouble breathing when I ran. I told my mother, who took me to my pediatrician, who said I was a couch potato and needed more exercise. He suggested that I start walking on the treadmill. (I hated that, by the way, because my father ALWAYS made me walk at 1 mph, which was so slow it hurt my legs to try to walk it.)

Needless to say, it didn't help. When I started seeing an allergist when I was ten, my mother made me tell him. He had me run up and down the stairs a few times. Then I came back to his office, where he listened to my lungs and told me I had asthma. 

He prescribed a bunch of different medications, none of which worked. Eventually, I got sick of trying--it was only when I exercised, anyway. And it went away no matter what I did. I got a note for gym that said I couldn't run and that was that. 

Until I started having "real" shortness of breath in the 8th grade. 

That was the first year that the changing seasons made me cough. The nurse actually sent me home so I could see my allergist that day. He gave me an inhaled steroid to be used every day. That helped, a little bit.

But I was still having trouble breathing every day. After I got bronchitis (the first of many, many bouts) at the end of the year, the trouble breathing got worse. I pretended it wasn't there, since it didn't seem like there was anything anyone could do for it. I took my inhaler multiple times--sometimes multiple times in an hour. It didn't do anything.

I saw a pulmonologist at that point. He said I definitely had asthma, and that I should keep taking my inhaler because it was probably doing something, even if I didn't know it was. 

This went on throughout high school. Something would set off my asthma and it would get worse. It rarely got better after it got worse. 

In college, the same thing happened. I got sick of it and made an appt with an allergist that my neighbor recommended. 

She put me on a slew of steroids, tried various different inhalers and even a nebulizer, but nothing worked. The steroids annoyed my blood sugar, one of the inhalers actually annoyed my asthma, and nothing helped much. 

During this time, the only thing I noticed was that I didn't get the asthma cough when I was on steroids since before the spring started. It was very nice not to get that awful deep, painful cough. 

Eventually, she said that she couldn't help me and she recommended I see a pulmonologist. So I did.

I happened to start seeing this doctor a week after I'd gotten a bad bout of bronchitis. What made it bad (other than the cold that made me more miserable than the bronchitis itself) was the shortness of breath. I literally couldn't finish sentences, couldn't walk and talk at the same time, and had to slow down my walk to school. I couldn't do stairs, I couldn't concentrate, and I was really, really uncomfortable all the time because of how bad the shortness of breath was. 

The first thing she told me was that asthma responds to bronchodilators, and that if mine doesn't then it isn't asthma. My PFT (breathing test) was normal like it always was, but my lung's ability to use the gasses in there was pretty low. 

The first thing I was evaluated for was vocal cord dysfunction, which can mimic asthma. Not surprisingly, I don't have that.

She took me off the steroids once the bronchitis got better and I had the methacholine challenge. She also sent me for an echo, just to be sure it wasn't a heart problem. The methacholine challenge came back so normal that the guy who was performing the test was begging the screen to show that I had a decrease in pulmonary function so we'd have something to go on (he liked me and he knew that if it wasn't asthma, we'd be hard-pressed to figure it out). 

The echo came back "abnormal", which was determined to be normal by the cardiologist my pulmonologist referred me to. I had a stress echo (which was the worst test I've ever had, including the EMG I had in the 12th grade), which came back normal. I had a pulmonary stress test, which also came back normal.

At that point, my pulmonologist made me get a letter from a psychologist that my breathing problems weren't caused by stress. To her credit, she accepted the letter at face value and never questioned it again.

I had bronchitis again in October of this year, almost exactly six months from the last time. At that point, I was still practically unable to finish a sentence, minor things like brushing my hair made me short of breath, and I was going out of my mind. After day two on antibiotics (the same antibiotic I'd been on the last time, in the same dosage), my breathing got infinitely better. That is where I stand now.

During that entire period of severe shortness of breath, my diffusion capacity (the part of the breathing test about how well my lungs use gasses) was in the mid to high 60's, when 80 is borderline low. Once I stopped having so much trouble, it went up to the low 80's. That was in December, when I last saw my pulmonologist and I assume it's been the same since.

Last I heard, she wanted me to go for acupuncture (as long as I was going for the fibro, anyway). That probably isn't happening because my insurance won't cover it. I'm seeing her in October. 

Now for the shadowing part. 

I shadowed a pulmonologist during my first month. (I now shadow him steadily, but that's beside the point). Somehow, we ended up in a discussion about how I don't have asthma.

He asked me a bunch of questions, including what sets it off. When he heard that the changing seasons, cold air, exercise, allergies, humidity, stress, laughing, hiccups, crying, etc all set it off, he said there's no way I don't have asthma. He said that negative methacholine challenges don't mean too much, and that exercise studies don't mean much, either, because you warm up when you do them for a long time. When you warm up, he said, the lungs don't overreact as much. As far as medications are concerned, there is such a thing as hard to treat asthma. 

So what, you ask, do you do to treat it, then? Allergy pills (thank you, Zyrtec), regular exercise with long warm-up periods and no exercise in cold air. Avoidance of triggers is also necessary, which would be great if I weren't allergic to common things like dust, mold, and pollen (and nuts and nickel and ibuprofen and contact lenses and lens solutions and soap and shampoo and laundry detergent and perfume and makeup and...the entire world, basically). And, you know, I love to laugh, I can't help it if I cry, and no one can prevent hiccups.

That day had been an eye-opener for me. I don't know if he's right or not, but I'd honestly rather a diagnosis of hard-to-treat asthma than no diagnosis at all.