By Jean Rommes, as told to Kendall Morgan

In 1985 I learned that I probably had chronic obstructive pulmonary disease (COPD). I first came across this condition in an article, looked it up and discovered it had all the classic symptoms. But I didn’t do anything about it until 2000, when I finally went to my primary care doctor.

I always knew I was more short of breath than other people. A spirometry test, which measures how much you can inhale and exhale, showed that my lungs were only functioning at 37%. I received a definitive diagnosis of COPD, which was very unusual at the time, especially in a small community like mine in Iowa.

There wasn’t much to choose from in terms of treatments. My doctor prescribed inhalers and sent me on. They helped me, but to be honest, it was like a punch in the stomach. I thought, “Well, I guess that’s it. Let nature take its course.” I didn’t really see any good options for myself. I left things alone for a couple of years. I gained weight. I barely moved. At work, if I had to walk somewhere, I would make three stops one way and four back to catch his breath. I suspect he was at least mildly clinically depressed.

That all came to a screeching halt one Sunday in 2003. I got into the shower and had to get out before finishing because I couldn’t breathe. The humidity in the shower and the physical effort required to shower was more than I could bear. I recovered and got up for work the next morning.

But instead of going to work, I went straight to the doctor. There were a few inches of snow and ice on the ground. When I finally got to the clinic, I was huffing and puffing. The nurses looked at me and went to get a wheelchair. My doctor admitted me to the hospital. He was in respiratory failure. Not being able to breathe was quite terrifying.

The doctor said that if I could lose some weight, my problems would get a lot better, but they wouldn’t go away. He was sure that he didn’t think I could or would do it. That made me angry and scared, which are two powerful motivators. For the first time in my life I thought, “Let’s do something about this.”

I was willing to consider a clinical trial for multiple reasons. For one thing, he was quite young and still quite active. The possibility that something could help and maybe not need oxygen just to exercise was appealing. I also liked the idea of ​​participating in something that could have a lasting effect on someone else in the future. I thought it was worth a try and my husband and kids agreed. There is still a lot we don’t know about COPD. Everything we can learn must be something good.

I have been very involved in advocating and educating others about COPD. For the past few years, I have worked as a patient investigator on a clinical trial comparing two different medications to treat COPD. I helped with the design of the study, adding information from the patient’s point of view to try to ensure we made things easy and understandable for people. I helped design and prepare information materials and consent forms. I have been in all the discussions about how patients are identified. I’ve been involved in practically everything.

There are currently treatments for COPD that didn’t exist when I discovered I had it. It is research that has made it possible. The best way to explore your options (including trials) is to see a pulmonologist, especially if you can find one who is involved in research. You can find good information online at the COPD Foundation, the American Lung Association, and other organizations as well. They have groups you can join and that is a good way to find people who know a lot about COPD.

It is possible to learn to live well with COPD. Many people are unaware of the opportunities available to them. When you are diagnosed, it is difficult to find the energy and determination, but with the right equipment and information, it is possible to change that.