The New Face of COPD: Ken

The New Face of COPD: Ken

COPD (Chronic Obstructive Pulmonary Disease) is an umbrella term for emphysema and chronic bronchitis. More than 12 million U.S. adults are estimated to have COPD. But even more alarming is evidence that close to 24 million people have impaired lung function, indicating a vast under diagnosis of COPD.

In honor of COPD Awareness Month, we met Eileen, Tim and Dee. Now, let's meet Ken, who has Alpha-1 Antitrypsin Deficiency, an inherited form of COPD. His lung function is less than a third of what it would be if he had healthy lungs. Yes, he smoked, like many young people of that age. But, nobody with normal lungs should have such low function at such a young age. Ken is the last person in our series on the new face of COPD.

Name: Ken
Age: 42
Location: Holland, Michigan
Occupation: (Former) warehouse material handler

When were you diagnosed?
On January 24, 2001. I was 35 years old. I cried, and I wondered, "Why me?"

Your lung disease is caused by Alpha-1 Antitrypsin Deficiency, a genetically -inherited lung disease. What did you think about that?
I'd never heard of it. I thought, "What is this?" I lost my mom to cancer six years ago, and I wondered, "What is this disease? Is it some kind of cancer, or what?"

What was the reaction of your family and friends?
My best friend quit smoking.

Were your family members concerned they might have Alpha-1?
I had known that my cousin had two liver transplants but I didn't know it was A-1 related. When I told my sister she understood the connection right away. I told her that she and the rest of the family should be tested, to find out if they're carriers or full-blown. My sister's also a carrier and her levels are fine.

Did it make you angry? Like you've been dealt a bad hand?
Once I was diagnosed with two other related conditions, that's when it really hit me about being dealt a bad hand. But I coped with it by researching on the internet and finding out all I could.

The first doctor I saw at the University of Michigan Dyspnea (shortness of breath) Clinic said to quit smoking or I'd be dead in a year and a half. He also said that the meds for this disease are expensive and he wasn't going to waste his time and effort on me if I didn't do my part. For me, I needed to hear that. This kind of honesty worked for me, but not everybody can handle that blunt talk right away. Some people can never handle it. Later on I went back to thank him for being so honest with me but found out that he wasn't working there anymore.

So this doc let you have it - then what?
I came home, walked in to see my sister at her job, tossed my cigarettes at her and said, "I'm done."

She said, "What's going on?"
"Well, I was just told that if I keep smoking I have a year and a half to live, and I want to live longer than that." Then I said, "C'mon, let's go outside and have one last cigarette together."
And we did.
I slipped a couple times over the next six months. But, I couldn't go back. You know, I felt it inside my lungs, the smoke, the burning, and what it was doing to them...and...I just...I'm done.