For 12 years, Lisa Kosak lived the high life: 7,000 feet above sea level in in the mountains of Eagle, Colorado.
But in 2007, she began facing major health issues that no one seemed able to diagnose. The owner of two businesses, Kosak first attributed her shortness of breath and swollen ankles and feet to long days at work. She had to stop pitching for her softball team.
But the swelling got so bad, she couldn't fit into her shoes. She began a string of visits to doctors. At first they attributed her breathing issues to heart disease. When she met with a specialist to undergo heart catheterization, he rejected the idea that her issues were heart related; he suspected sleep apnea instead. Testing showed it was neither.
Finally, doctors tested her for rare diseases and conditions. That’s how they found out that she had Alpha-1 Antitrypsin Deficiency. Doctors suggested she move to a lower altitude to ease her breathing and reduce her dependency on supplemental oxygen.
Scared by what she read online about Alpha-1, she waited a week before telling her two sons. “Their first reaction was, ‘Let’s get out of here,’” Kosak says. The family began looking for a new home.
Meanwhile, she met with Robert Sandhaus, MD, PhD, clinical director of the Alpha-1 Foundation and medical director of AlphaNet, at National Jewish Health in Denver, where he directs the Alpha-1 program. “He told me everything I needed to know and made me feel much better about living with Alpha-1,” says Kosak.
After visits to California, Nevada and Arizona, a friend suggested Florida. Kosak bought a house in Vero Beach, FL. Now living only 22 feet above sea level, she can breathe easy without the use of supplemental oxygen 24/7. “As soon as I stepped off the plane, I felt the difference,” says Kosak, and she’s been feeling better ever since.
She turns 50 this year, which is also the 50th anniversary of the discovery of Alpha-1. (“I feel like the poster child for Alpha-1!” she says.)
She spreads the word about Alpha-1 as often as she can at local hospitals and senior centers. She is determined to stay involved and tells other Alphas, “Don’t let it take control of you, take control of it!”
Read more Alpha stories here.