If you don’t treat asthma aggressively and control it, you will end up getting worse and worse. Severe flare-ups can kill you, and more than likely they’re adding to the progressive damage. Every severe attack destroys more and more of your lungs. Given enough time, there’s what we call airway remodeling, in which the lungs’ natural architecture starts changing. They become really stiff and fibrotic, and if this gets severe enough, medicines don’t work anymore. Your lungs can start looking like the lungs of someone with COPD; they take on the same characteristics, though not quite as severe. So all of a sudden, you’ve changed from a reversible to an irreversible disease.
I’ve been on medications since I was about 5 or 6. I’ve been on prednisone for about 50 years, using inhalers, etc. A lot of people, poor people especially, still can’t afford prescription inhalers, and up until just a few years ago it wasn’t an option for them—which is why Primatene lasted so long. It did help people, certainly prevented things.
About My Care Team
My care team has always been important, but particularly when I decided I wanted to run a marathon. It started about six years ago, so most people who know me knew me before that. My physicians at the time didn’t like it at all. They supported me at first, that I was getting out there and exercising and was committed, but I took it way past that. You start with one, then another one, then the Boston Marathon!
After I’d accomplished one or two marathons, my pulmonologists were looking at me like I was crazy to keep going. I wouldn’t say I’m common; most people would be scared to death to push themselves when they can’t breathe. Still, pulmonologists cannot and should not discourage a patient from exercising, because it’s absolutely essential for healthy lung function, even for people with emphysema. In my case, I took it to the extreme. I did more than just that one race, and that’s what the doctors weren’t too crazy about.
My friends, my family, they thought it was the greatest thing, and the more I did it, the more I wanted to push myself. I’m not planning any more races now because my lung function is so low, but I’m not gonna completely rule it out. I’ve qualified to run the Boston Marathon in 2012, but I’ve done that race three times already, so what would doing a fourth one prove? It’s not like I need another T-shirt. If I did run it again, it’d be to raise awareness for severe asthma, but I’d need sponsors; running marathons is expensive! If I was smart I’d do a half-marathon, but after you do the biggest marathon in the world, it’s hard to settle for those little races.
I started blogging in 2005 at breathinstephen.com because I had just discovered walking and wanted to track my progress. As a respiratory therapist at the time, I knew how important exercise was, so it was basically an experiment using myself as a guinea pig, and my blog was where I recorded my data.
Back in 2004, I’d become so sick I couldn’t work anymore, so the folks at my company made it easy for me to retire at the age of 49. I wouldn’t say I was cut off or anything, but—things were different. Then, just by being involved in races, I met so many people who were then integrated into my support network. People would read about me. I got emails from asthma researchers, people interested in what I was doing. Three years ago I met Sally Wenzel. She’s probably one of the best researchers living right now. I actually started lab-ratting myself out to researchers, and she was one of them. Over the years we became good friends. That’s when I really started advocating more and more for asthma research.
When I’d get sick and blog about my experience in the hospital, I’d get bombarded with responses; people love the gory stuff. After checking my search hits, I’d realize that’s what people were looking for. They liked knowing someone else had gone through a similar experience. So I was sort of forced to add in the asthma stuff, whereas originally the blog was more about walking. So this whole thing has sort of morphed into something about asthma. I’ve met literally hundreds of people and have become involved in advocacy for asthma. It’s created a real support system for me.