PATIENT VOICES

My Severe Asthma Journey: Connecting With My Pulmonologist

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I was sitting on the porch with my son enjoying the summer weather when I started wheezing. It felt like I was breathing through a straw. One of my neighbors was with me and she suggested I go to the hospital and get a shot to ease my breathing. At that point, I was really starting to get nervous, so I got in the car and drove to the hospital. At the emergency room (ER), the staff gave me epinephrine to open the airways leading to my lungs. They told me I had allergic asthma; my lungs are hypersensitive to certain environmental triggers, and exposure to these triggers makes my airways constrict. This was the first time I’d ever experienced or been diagnosed with asthma. The hospital gave me an albuterol rescue inhaler in case it happened again, and I was on my way.

And then it happened again. Even with the inhaler, I spent the next two years in and out of the ER; it was a vicious and uncontrolled cycle. The albuterol rescue inhaler helped to open my airways by relaxing the surrounding muscles, and it gave me short-term relief. But after four hours I’d be wheezing again. And one primary care doctor told me I really shouldn’t use the inhaler more than every six hours. In those first few years, I wasn’t consistently seeing a single doctor for care of my asthma. And, still being in my late 20s, I was resistant to the idea of treating my asthma with anything beyond the albuterol because it seemed like an acute problem, not a chronic one. It hadn’t been explained well enough to me how daily medication would keep my asthma under control. The focus was more on figuring out what was triggering the asthma: was it pollen? Was it the dog? Why was this happening?

Then I got pregnant. My obstetrician/gynecologist (OB/GYN) told me about a third of asthmatics improve during pregnancy, about a third get worse, and the rest stay the same. Well, my asthma got worse. I needed my rescue inhaler most days, and the symptoms were really bad at night when I’d wake from sleep gasping for air. (To this day I still keep a rescue inhaler by my bedside.) Then, about five months into my pregnancy, I was hospitalized for a couple weeks and put on oxygen and intravenous steroids.

After discharge, I had to continue taking steroids orally for the next six months. Once my daughter was born, I said, “enough is enough.” I’d been trying to manage my asthma reactively for too long. I had to be proactive and find a pulmonologist.

I was out of town visiting my parents following the birth of my little girl. While there, a friend of mine connected me to her pulmonologist—the first lung doctor I’d ever been to. He said if I needed my albuterol every four hours, then my condition was classified as severe and I needed to find a pulmonologist near me to manage my asthma immediately. So I went back home and asked my primary care doctor for a referral.

The pulmonologist I started seeing was absolutely wonderful. After assessing my condition, he explained to me that controlling my severe asthma was going to take more than albuterol in response to attacks. I really didn’t want to take a daily medication, but I trusted my doctor. So I started taking a long-acting inhaler each day to calm my airways down. And truly, from that point on, I’ve had much better control. Currently, my daily inhaler combines a steroid with another drug that works to keep my airways open.

My family has moved a lot over the years, so I’ve had to find new pulmonologists several times. What I’ve learned to do is make sure my insurance plan doesn’t require a referral to see specialists. This way, I can see the pulmonologist I want to see without wasting time and money getting a referral from my primary care doctor. To me, it’s important that I go to a pulmonologist to learn about the latest and greatest medications available. They didn’t have inhaled steroids when I was first diagnosed, but new inhalers and other medications for asthma are constantly coming out. If you have a heart condition, you don’t let your primary care doctor take care of it. The same holds true if you have a lung condition—and asthma is a lung condition. You go to a pulmonologist because they know what’s going on in their field.

Most people think asthma is transient, not chronic; they teach you from the time you’re young that if you get short of breath, you take your inhaler. That’s fine if that works. But it doesn’t work for people with severe asthma. People diagnosed with severe asthma really need to be conscientious of their asthma at all times. It’s your little nemesis that will rear its ugly head if you get too tired and weak.

I wish I hadn’t been so resistant to taking daily medications early on. I would have avoided all those ER visits—not to mention the terrifying asthma attacks that left me thinking I was probably going to die. I also wouldn’t have wasted years trying to pinpoint my allergies. It seems to me there’s a lack of education as far as when someone with asthma should stop seeing an allergist and start seeing a lung expert. Severe asthmatics don’t need to get shots for a wheat allergy; they need to see a pulmonologist.

For years, I was in denial about the severity of my condition. Asthma attacks are too hard on your body to let them go uncontrolled, especially when there are medications available to prevent them. It took me a long time to learn that. My pulmonologist was the one who educated me; he told me I didn’t have to live that way. Together, we could control my severe asthma.

Denise R. lives in Pennsylvania with her husband. She is a mother of two and a grandmother of two active little boys. Recently, she retired after 25 years as a health care administrator. Denise enjoys traveling and volunteering.