Chronic obstructive pulmonary disease (COPD) is the fourth-leading cause of death in the U.S., and 12 million people don't know they have it.
Leonard Anderson wishes they did.
Anderson, who directs the pulmonary rehabilitation program for Olympic Medical Center, hopes that public awareness of COPD will lead more people with risk factors and early symptoms to seek help. (See related report for symptoms and risk factors.)
"COPD is a family of diseases," Anderson said, "including emphysema, chronic bronchitis, and sometimes asthma. It can be caused by anything that chronically irritates the lungs."
Yes, that includes smoking, and 80 percent of COPD is caused or aggravated by smoking.
"We know that if we could stop smoking, a huge percentage of COPD would go away," Anderson said.
"We've seen a huge increase in the number of women with COPD."
Smokers at risk
Many are women who started smoking in the 1940s to 1960s and are now in their 60s to 80s.
But, he added, "Not everybody with COPD was a smoker. Don't make that assumption."
What is the treatment?
"It's a chronic disease," Anderson said. "It's not going away."
The goal of treatment is to maximize lung function. For smokers, the first and most important step is to stop smoking.
"There's nothing the doctors can do that will help as much as that," he said.
Medications are used mostly to help with symptoms.
A third treatment is pulmonary rehabilitation.
"That's where I come into the picture," Anderson said. His program combines education, exercise and pulmonary self-care.
"I teach how to take care of your damaged lungs."
In his "former life," as he calls it, Anderson was a professional ballet dancer and taught ballet at a fine arts high school for 10 years. His work in Sequim as an exercise physiologist fits well with his education.
"So much of pulmonary care is teaching," he said. "My job is to teach my patients enough to do it on their own."
Pulmonary rehabilitation runs for 12 weeks, twice a week, and includes individual and group activities with patients. Follow-up services to encourage maintenance of the skills can be very helpful, Anderson said, because many pulmonary patients can't go to a public gym due to risk of infection.
Flu shot a must
A fourth significant factor is infection prevention. For people with COPD, it's vital to get the flu and pneumonia shots, and to avoid exposure to infection and illness.
"An ordinary cold may put them in the hospital," he said.
Mary Margolis knows all about the risks of infection. At age 43, she is retired, fully disabled and living on Social Security and Medicare. Her career as a probation officer was cut short by COPD.
"I was getting so many infections, my doctor finally said, 'You can't do this any more,'" Margolis said. Besides the medical problems, she said, "It's been a real financial nightmare."
Meds from overseas
Like most people in their 30s, Margolis didn't have a financial safety net for the loss of income and the medical expenses.
"I order a lot of medications from India because it's so much cheaper," she said, citing an antibiotic that would have cost $78 locally, which she was able to buy for $6.50.
She tries to keep active and now walks beaches and level trails instead of hiking in the Olympics.
Ironically, Margolis began getting sick after she quit smoking 10 years ago.
"My condition is not from smoking, but that made it worse," she said.
After two years of frequent infections and consultations with many doctors, she was diagnosed at the University of Washington with constrictive bronchiolitis. This summer tests showed some loss of lung function for the first time in five or six years.
"They think what I have is some sort of genetic problem," Margolis said.
Turns to writing
When Margolis realized that she would be home most of the time, she got a computer and took writing classes at Peninsula College. She wrote an article about bronchiolitis which was published in a magazine called "Everything Respiratory."
She also wrote a tween novel - not yet published - drawing on her background as a young offenders' probation officer.
"My characters like to get in trouble," she said.
Her family has helped Margolis cope with the changes that COPD has brought.
"I take care of my father and he takes care of me, too," she said.
She and her father, David Margolis, live together in Port Angeles, and she has two siblings in the area who help with things such as unloading 40-pound bags of wood pellets for her stove. Margolis is strong enough to carry them in, she said, but she just can't breathe at the same time.
Margolis also joined an online support group for people with COPD. There she met another Port Angeles woman, Sandra Howard, who helped start a local support group for people struggling with all kinds of lung disease.
(See Sandra Howard's Guest Opinion on page 15.)
Margolis now serves as the informal coordinator for the Pulmonary Support Group, which welcomes people with lung problems of all kinds. She maintains an e-mail contact list and arranges speakers for some of the meetings.
"Some people (in the support group) really want the education, the professional speakers. Others want the personal support for patients and caregivers," Margolis said. Because of that, not every meeting has a speaker.
Anderson said, "The support group is a great place to get information from people who know the day to day reality of COPD."
"In the group we can see that it's not a death sentence," Margolis said. "There are things we can do as patients to keep going." Some in the group are transplant survivors or candidates, while others, like Margolis, are not.
For those who do need transplants, the prospects can be discouraging.
Larry Howard, whose wife, Sandra, had a lung transplant, explains it this way: "There are some stringent regulations about what makes a lung transplantable.
"You have to die in a hospital. You have to agree to be a donor. There are probably some religious restrictions. Only about 1 percent of potential transplantable lungs are really available."
In Washington, 54 percent of people issued driver's licenses or identification cards in 2008 indicated their willingness to be organ donors, according to www.donatelife.net. More information on organ and tissue donation is available on that Web site.
Reach Sandra Frykholm at sfrykholm@sequim
Pulmonary Support Group
_ Meets at 11:30 a.m. the second Saturday of each month at the Mariner Cafe, 707 E. Washington St., Sequim. No reservations are required.
_ For information, contact Mary Margolis at 452-1473 or e-mail firstname.lastname@example.org.
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