US COPD Coalition

Spotlight on Living with COPD: Part 1


The following article is re-printed with permission. It first appeared online on Yahoo Lifestyles as part of the author’s series on Chronic Obstructive Pulmonary Disease.

It Took This Man 9 Years To Get His Lung Disease Diagnosed

by Korin Miller, Yahoo Lifestyles

When you talk to your doctor about experiencing unusual symptoms, you expect that you’ll be taken seriously. But Ken Benson says he complained to several doctors about having shortness of breath for nine years — and not much was done about it.

“Initially, I started getting shortness of breath when I was coming back from my morning jog around the neighborhood, which I had always done as a way of waking up,” he tells Yahoo Lifestyle. “Instead of coming back and feeling ready for the day, I found myself out of breath.”

Benson says for nearly a decade he brought this up to his family doctor and felt like he was getting brushed off. “I kept switching doctors, hoping to find an answer,” he says. “I went through four of them.” Benson says some would refer him to an allergist, who wouldn’t find a reason for his breathing issues, and then would seemingly give up. Nobody ever sent him to a pulmonologist, which is a doctor that specializes in lung conditions.

So, Benson was given several inhalers without much instruction. “Nobody even showed me how to use them,” he says. “After a while, I had a drawer full of every inhaler there ever was. I also found out that I was allergic to absolutely nothing other than dust mites.”

After 10 years of no answers, Benson finally found a doctor who referred him to a pulmonologist. There, he was put through several tests before he finally got a diagnosis that made sense: He had adult asthma and severe emphysema — a form of chronic obstructive pulmonary disease (COPD). Benson, then 53, says his new medical team walked him through how to properly use an inhaler, the right diet for his condition, and how to take care of himself. He ended up using that doctor for the next 20 years.

‘I finally have an answer: This is really good.’

“My first thought on being diagnosed was ‘I finally have an answer: This is really good,’” Benson says. “But things became increasingly difficult for me.”

The years of trying to find the cause of his symptoms had caught up with him, and Benson says he struggled with anger and depression. “My mental state was really messed up,” he says. Benson turned to self-help books and group therapy, and says he finally started to turn a corner. “Everything started coming together,” he admits. “I started taking care of myself and decided to do all the stuff that I could to help my health from this point on. Up until that point, I thought I had been done wrong by the medical profession. But then I thought, “Okay, well, I can do this.’”

Still, COPD has a strong influence on Benson’s life. Now 75, he uses supplemental oxygen while he sleeps, when he flies and during his chair exercise classes at the gym. “I’ve learned that I need a rolling cart when I have groceries because I can’t carry a bag far without getting short of breath,” he explains. He also needs to eat more frequent, smaller meals because larger meals can put too much pressure on his diaphragm and make it hard for him to breathe.

Benson can only ride his bicycle with the wind at his back. “When the wind is in front of me, I’m working so hard to pedal that I’m out of breath,” he says. “That was a real eye-opener for me.” He’s learned to take frequent sitting breaks during his day, even between having breakfast and getting dressed. “I have a constant reminder of COPD,” he notes. “Some days, it just feels like this nasty little puppet sitting on my shoulder saying I can’t do things. Some days you listen to it, and other days you say, ‘Yes, I can.’”

Benson stresses that other people need to press for answers if they know something is off with their health and their doctors can’t find a solution. “If you don’t agree with your doctor, tell them that you want to keep looking for an answer,” he says. “It drives me crazy when people aren’t acting in the best interest of the patient.”

Ken Benson is a former member of the US COPD Coalition Board of Directors.

Korin Miller is a writer specializing in general wellness, sexual health and relationships, and lifestyle trends, with work appearing in Men’s Health, Women’s Health, Self, Glamour, Yahoo, and more.

Read Ms. Miller’s original article here.