COPD: A Long, Hard Ride

COPD, Healthy Aging, Healthy Living, Power to the Patient, Respiratory Health
on March 1, 2012
Karen Erickson shares her story of life with COPD.

At 35, Karen Erickson of Thousand Oaks, California, felt all set: She had a longed-for career as a scientist, had healed from divorce, and was back to two-hour workouts, biking and running. “My life revolved around working hard and playing hard,” says Erickson, now 45. “I was on top of the world.”

Until one day in Spinning class, she blacked out. She had noticed some breathlessness before: “I thought I was just getting older.” Doctors said she had exercise-induced asthma, prescribing bronchial inhalers. But the breathless episodes increased.  Finally, two years after her initial symptoms, a blood test revealed a genetic form of chronic obstructive pulmonary disease (COPD), alpha-1 antitrypsin deficiency-related emphysema. Alpha-1, caused by a missing protein called alpha 1-antitrypsin, affects 100,000 Americans, less than 10 percent of whom are diagnosed.  Emphysema, a form of COPD, destroys the lungs’ air sacs. “They gave me two years to live,” says Erickson.

Her initial response was denial. But inspired by doctors who treated her, she thought, “I’m going to learn about this. I’m going to beat these two years.”

Now almost 10 years out, Erickson, awaiting a lung transplant, has 18 percent lung function. For five years, she’s worn oxygen while she sleeps and works out. But she still exercises daily, bench-pressing 130 pounds: “And I throw a couple of oxygen tanks on my back and ride my bike for up to 45 minutes.”

“She is an amazing athlete—to this day,” says Penny OBrien, a fitness trainer and former general manager of the Fitness and Wellness Center at the company where Erickson worked.  “And her exercise has been a huge factor in her ability to be as well as she is.”

Erickson went on disability in June of 2010,but she’s not lying around: She’s thrown herself into work for the Alpha-1 Association and Alpha-1 Foundation, planning public policy and speaking at congressional briefings, drug companies and fundraisers.

“When I started this battle, it was about beating the two years, staying healthy enough for a transplant and continuing to learn,” says Erickson. “But now it’s about doing all I can to raise awareness, to find a cure, and to find every patient who needs it.  It’s the fight that’s kept me alive.”

She knows the disease has changed her, but she sees gifts in the change: “I am a much better person for having alpha-1. Before I wanted to enter corporate America and make money.  Now there’s nothing I wouldn’t do for another patient.

“There’s no point in my life where I would say I’m happy to have alpha-1. Every day is difficult. My bike rides now are at a pace I used to walk. But when I hit the mountains, I see things I never saw before. I take in the beauty. That wasn’t in my life before.”