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.
Location: Holland, Michigan
Occupation: (Former) warehouse material handlehen 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.
Do you use supplemental oxygen? Yes, when I sleep and when I work out.
Do you exercise regularly? Yes, two days a week at pulmonary rehab. I lift free weights at home at least two days a week, ride a bike - indoors in the wintertime and outdoors in the summertime. I shoot competitively with my bow during the winter, and I play golf as much as possible.
My doctor at U of M is cool. (Smiles) A while back I told her what I was doing at rehab and she shook her head and said, "No, Ken…no… You have to work harder."
She’s honest with me, and she’ll get on my case if she thinks it’ll help. I appreciate that.
Author’s note: Ken’s being humble with this brief mention about bike riding. He’s actually very involved with cycling events to raise awareness and funding for Alpha-1 and COPD research.
Tell me about the bike rides for Alpha-1 awareness and research funding.
I enjoy them and the people I meet. It’s hard work, but we support each other. I wouldn’t be able to do it with out my oxygen. I feel like I’m doing something to help…and I get to see some beautiful places. Anybody you meet on a bike ride, you just get along with. Even if they’re not Alpha’s, if they see you riding and wearing oxygen…there’s compassion on their face. You know, if they didn’t see us out there, they might never know that people with this kind of disability can do a ride like this.
What is your biggest limitation from COPD? Getting involved with a woman in an intimate relationship.
Do you think your disease scares them off? I don’t know… But, I do know that I don’t need sympathy. I just want a partner, not somebody who feels they need to take care of me.
What has helped you most? My faith in God, meeting my spiritual mentor, and learning that God is a loving God and He will never let me go. I understand that I may never get a lung transplant but when I die I will be restored immediately. Having my granddaughter, Kelsey, has also helped. She’s the reason I fight.
The best thing that happened to me was coming to pulmonary rehab and being with the people in my class. Also, my medical staff - in rehab, my local pulmonary doc, and my doc at U of M - through all my ups and downs they continue to believe in me and work with me. There was another young guy at rehab with Alpha-1 who looked like he was 80 years old. That opened my eyes. He was still smoking and not doing anything to help himself. I said to myself, “I’m not gonna be like that.”
If you had to give advice to somebody with COPD, what would it be? Upon diagnosis, research anything and everything about your condition, enroll in pulmonary rehab and continue it forever. Know what your PFT (pulmonary function test) numbers are, and your O2 (oxygen) saturations at rest and working out. Find out what you can do, do it - and enjoy it. Focus on the positives, not the negatives.
What is your lung function now? I think it’s 28% (out of 100%). I want to play baseball and football with the kids, but I know I can’t do it. I can’t run around with them. For now all I can do is accept it.
How has having COPD changed you as a person? Before, I thought I was gonna live forever. I was…you know… indestructible. After diagnosis, it opened my eyes. Now I see somebody with a disability and, you know, you don’t know what they’re going through. I know how I suffer. But, I don’t know how they suffer.
I appreciate the beauty of the sunrise and sunsets - the world we live in. There’s a lot of negative things going on, but I…I can see a lot of beauty in the world. When you smoke you’re polluting yourself. When you litter with garbage, you’re polluting the earth.
What keeps you going? If I see an obstacle no matter how big or small, I try to overcome it. I hope to see my granddaughter graduate from college and get married. I enjoy just living, waking up every day and seeing what’s out in the world.
Respiratory Therapist, COPD educator and author