Written by Jean Romme, as told to Kendall Morgan
I discovered in 1985 that I probably had chronic obstructive pulmonary disease (COPD). I first learned about this condition through an article, and when I researched it, I found out that all the typical symptoms apply. But I didn't do anything until 2000, when I finally talked to my doctor about it.
I always knew I was more out of breath than others. A spirometry test, which measures how much air you can breathe in and out, showed that your lungs were only working at 37% capacity. I received a confirmed diagnosis of COPD, which at the time was highly unusual, especially in a small community like mine in Iowa.
There weren't many options when it came to treatment. The doctor prescribed an inhaler and sent me on my way. They helped, but to be honest, it was kind of a fist pump. This is what I thought. Let nature take its course. ” I didn't find a good option for myself. I let things go for a few years. I've gained weight. It hardly moved. When I had to go somewhere at work, I took three breaks on the way there and four times on the way back to catch my breath. I suspect I was at least mildly clinically depressed.
One Sunday in 2003, everything came to a screeching halt. I took a shower but couldn't breathe and had to get out before it was over. The humidity in the shower and the physical exertion required to take a shower was more than I could handle. I recovered and went to work the next morning.
However, I did not go to work and immediately went to the doctor. There was several centimeters of snow and ice on the ground. When I finally arrived at the clinic, I was gasping for breath. The nurses took one look at me and headed for the wheelchair. My doctor admitted me. He was suffering from respiratory failure. It was quite scary not being able to breathe.
The doctor said that if I could lose some weight, the problem would get a lot better, but it wouldn't go away. He didn't think I could do that, and he was sure he never meant to. It made me angry and scared, two things that are powerful motivators. For the first time in my life, I thought, „I want to do something about this.''
I was ready to take control of my health and explore my options. I started combining diet and exercise very actively. And when I saw a notice in the Sunday paper about her COPD clinical trial at the University of Iowa, I decided to pursue it. They were testing a less invasive method to close the more damaged areas of the lungs where air gets trapped in COPD. I had heard a little about it and knew what the basic idea was. They were essentially trying to accomplish lung volume reduction surgery (LVRS) without cutting you. They used bronchoscopy to enter the lungs and install small valves. The goal was to block wasteful parts of the lungs and direct air to more functional areas, allowing people to breathe better.
I made an appointment and took various tests to see if I was eligible for the trial. I didn't, but I still learned a lot about COPD by going through the process. The people running the trial were very willing to talk and answer questions. They called me back several times. Although I have not yet participated in any new drug trials, I am participating in other clinical studies where researchers are trying to learn more about his COPD. One study looked at the relationship between bone density and COPD. Another is studying the effects of COPD on the brain.
There are several reasons why I wanted to consider a clinical trial. First, I was quite young and still quite active. The possibility that something could be helpful and that I might not need oxygen just to exercise was appealing. I also liked the idea of being a part of something that might have a lasting impact on someone in the future. I thought this was worth a try and my husband and kids agreed. There is still much we don't know about COPD. Everything we learn must be good.
I have been serious about advocating and educating others about COPD. For the past few years, I have served as a patient investigator for a clinical trial comparing two different medications for her to treat her COPD. I helped design the study and tried to add insights from the patient's perspective to make things easy and understandable for people. We helped plan and create explanatory materials and consent forms. I've been involved in all the discussions about how to identify patients. I've been involved in almost everything.
There are treatments for COPD now, but none existed when I found out I had COPD. Research has made this possible. The best way to consider options, including clinical trials, is to consult a pulmonologist, especially if you can find one who is involved in research. You can also find helpful information online from the COPD Foundation, American Lung Association, and other organizations. They have groups you can join and it's a good way to find people who know a lot about COPD.
It is possible to learn how to live well with COPD. Many people are unaware of the opportunities available to them. It can be difficult to regain energy and determination after a diagnosis, but with the right team and information, it is possible to turn things around.