When Asthma Doesn’t Seem Like Asthma

Quick. When you think of someone with asthma what do you picture? What do you hear?

For most people the answer is wheezing. They see someone who always seems to struggle for air a bit or whose breathing is audible a lot of the time. My aunt had that kind of asthma. It was scary stuff. She could go from feeling fine to not feeling fine quickly and listening to her struggle to breathe was painful and when you were familiar with her triggers, you took great pains not to trigger an attack.

But my aunt’s asthma is more complicated for me because, it turns out, that I, too, have asthma, even though I’ve never sounded the way she did. I knew about exercise induced asthma and I knew that wasn’t what I had. Exercise and I have always been on somewhat unfamiliar terms (my current attempt at a 30 day challenge, not withstanding). But I always knew I struggled sometimes to breathe. I would start coughing and I couldn’t stop and I couldn’t seem to catch my breath. It was uncomfortable, but I didn’t think it was life threatening. Life limiting maybe, but not life threatening.

And then, almost ten years ago, it wasn’t so simple anymore. I got sick. Very, very sick. My poor doctor was taxed almost beyond his abilities trying to figure out what was wrong with me. He ran tests; he thought he had an answer. Off to a specialist I would go and they would determine that what he thought wasn’t it. He thought I had polyps in my nose. There’s family history and it seemed logical. Except, upon much closer examination by an ENT, it was determined that I absolutely didn’t. More blood tests and he found RSV. Yeah, that RSV. The one that kills babies and old people. That one.

I was so sick that I ended up taking two weeks leave from teaching — in the middle of a semester. Let me tell you how often that’s done. Yeah, very rarely. But, with his note and sick leave built up, I was able to do it without a loss of income. And still, I was sick afterward. It took another three months of me not getting better and him struggling to figure out the problem before the magic day happened.

I started coughing in the office. The spontaneous, racking cough that would get where I honestly thought I would die before I would stop coughing. The cough where I couldn’t catch my breath, couldn’t speak, couldn’t do anything but cough with tears streaming down my face.

He had been on his way to see another patient when he heard me. He burst into the room, and this was real bursting because I hadn’t even seen the nurse yet, and said, I know what it is.

I’m looking at him like he’s lost his mind and he hands me a rescue inhaler and tells me to breathe squeeze and breathe in. I did. He told me to do it again. I did.

And suddenly, I could breathe. It was like a miracle. It was Albuterol.

He called it non-wheezing asthma and he knew how to treat it. I take two different drugs, carry rescue inhalers on my person at all times, and have a nebulizer in my bedroom (and in my carry on luggage when I go on trips). You’d think it would be a relief to know what it is and how we can manage it, and in many, many ways it is. Now I can explain why some things set me off and make me cough and uncomfortable, and yeah. But, because it doesn’t sound like the asthma my family has known, it’s been hard, at times, for them to accept that it is, in fact, asthma.

At one time, I was advised that I should get full-fledged asthma testing because “it’s not really asthma unless you have those tests.” My doctors have a different point of view. I would not respond so well to the drugs that I take if I didn’t have asthma — in other words, they would have no appreciable affect on my coughing and on my struggles to breathe.

These days non-wheezing asthma has a new name: cough variant asthma. What’s particularly interesting, if you read around on it, is that it is difficult to diagnose because the usual tests for asthma don’t work. In fact, there are really only two ways to diagnose it 1) be lucky enough to have an attack in the doctor’s office, or 2) inhale irritants to trigger an attack in the office. In other words, have an attack to prove that’s what’s going on. So, I guess I got lucky in that I had an attack in the office and my doctor knew what he was hearing.

The really tough part is that because I have it, both of my kids have an increased chance of developing it. The first pediatrician we had didn’t think it was an issue, but our current one asks me every time we bring Ben in if I’ve seen any signs or anything that worries me. Because it’s difficult to diagnose and it does occur in children, the best way to catch it is for parents to be aware that it exists and that it doesn’t behave like typical asthma. So, what do I watch for:

1) Coughing. A dry cough that is completely unproductive. It can sound a bit like barking and a bit ragged. It can also seem uncontrollable, like the kid literally can’t stop coughing. Sometimes the kid may say that their ribs hurt from coughing or talk about a little tickle in the back of his/her throat that seems to be making them cough.

2) Specific things that seem to trigger a cough. My triggers are grass, pollen, cigarette smoke, dust, and perfume. So yeah, I don’t get out much.

Of course, this means when Ben has an unexplained coughing fit, I get a little nervous, but I don’t see the uncontrollable aspect that I associate with my asthma. He seems to be able to get it under control and he doesn’t seem to get breathless. I guess that means so far, so good.

Excuse me, I have to go find an inhaler — the dogs just came in and I’m having a “bad breathing” day.