Patients with COPD — chronic obstructive pulmonary disease — often live a life tethered to oxygen tanks, planning every move to preserve their precious small lung capacity.
Every breath is a labor, “like breathing through a straw with a hole in it,” as one sufferer, Sandra Howard, put it.
Yet for Howard, 67, of Port Angeles, a diagnosis of COPD came as a breath of fresh air.
She went from being misdiagnosed with asthma to having a lung transplant, and a new lease on life.
She wants others to know more than she did about COPD so they can get relief sooner.
She is part of a support group for COPD sufferers on the North Olympic Peninsula, which meets monthly in Sequim.
Members span the North Olympic Peninsula, from Forks to Port Ludlow.
No relief
Howard had been diagnosed as suffering from asthma in her 50s, but the treatment did nothing to relieve her shortness of breath and other symptoms.
“The medication was not working,” she said.
Her doctor finally told her to see a pulmonologist, a doctor who specializes in respiratory diseases.
He told her she didn’t have asthma, but severe emphysema.
“I was happy when I learned I didn’t have asthma,” she said.
With a diagnosis there was hope for proper treatment.
Emphysema is one of a number of chronic lung diseases which affect more than 12 million people in the United States, according to the National Heart, Lung and Blood Institute, a division of the federal Department of Health and Human Services.
The majority of people with COPD, like Howard, are or were smokers.
Howard had never heard of the disease when she was in her 30s, “suave, looking sexy, smoking — [and] waking up every morning coughing my insides out to get my pipes open,” she said.
COPD is an umbrella term, covering a wide range of diseases which affect the lungs’ ability to process oxygen efficiently.
Emphysema and chronic bronchitis are the top two diseases, but other sufferers may have a genetic deficiency of the alpha-1 antitrypsin (AAT) protein, which leads to organ damage, or bronchietasis, a repetitive lung infection which damages tissue, or other uncommon conditions, according to the NHLBI Web site.
Asthma is not normally categorized as a “chronic” pulmonary disease, since most forms can be cured. The other diseases can not.
Rare lung disease
Mary Margolis, 43, of Port Angeles, was 33 when she was diagnosed with the rare pulmonary disease, obliterative bronchiolitis.
“It means I have really small airways,” she said. “They don’t know where it’s from; it’s idiopathic.”
Margolis smoked “off and on” for 15 years, but said she hasn’t smoked in 10 years.
For Margolis, having COPD means allocating her energy and planning her day carefully.
She was a Clallam County probation officer until 2001, when the disease made work too difficult.
People who suffer from COPD don’t get better; they just learn to live with it in order to improve their quality and longevity of life. In extreme cases they may receive lung transplants.
Transplant
“You can delay the deterioration, but you can’t stop it all together,” Howard said.
After her diagnosis she enrolled in a pulmonary rehabilitation program and learned everything she could about COPD.
“One of the main things I learned was that I needed to be in charge of my disease,” she said. “My medical caregivers needed to be more like ‘consultants.'”
Still, her condition continued to deteriorate, and in October 2007 she was put on the national lung transplant waiting list, under the care of Dr. Mark Fischer in Port Angeles.
On May 4, 2008, she got the call to pack her bags and head to University Medical Center in Seattle.
The mother of a 19-year-old man in Alaska had agreed to donate his organs, after taking him off life support following a car accident.
“I still get teary eyed when I think of her courage and what a huge difference that gift made in my life. It’s a second chance,” Howard said.
After the mother agreed to release the identity of the donor, Howard learned he had the same birthday as her husband.
‘I call her Rosario’
Howard received her new lung on Cinco de Mayo — the fifth of May.
“I call her Rosario,” she said, patting her chest over her “new” lung.
“I try to live my life in such a way to honor him,” she said of the young man she never met.
She makes chocolate chip cookies on his birthday, just as his mother used to.
While Margolis celebrates her friend’s successful transplant, she is hoping to not go down that path.
“I’ve been stable for a number of years,” she said. “I hope it doesn’t progress to the point of needing a transplant.”
While statistics show someone dies of COPD every four minutes in the United States, Margolis emphasized that a diagnosis of COPD is not a “death sentence,” and that there are things patients can do to improve their quality of life.
“Exercise is huge,” she said.
She said she mainly walks for exercise, while Howard said she has a treadmill “that I don’t just use as a clothes rack.”
Both women stressed that anyone with breathing problems should ask their doctor to be tested for COPD, so they can begin treating and managing the disease, and get on with their life.
COPD meeting
The COPD support group meets the fourth Saturday of every month at the Mariner Cafe in Sequim. The group is informal, and may or may not have a guest speaker.
The next meeting is set for 11:30 a.m. Nov. 28 at the Mariner Cafe, 707 E. Washington St.
For more information contact Mary Margolis by phone at 360-452-1473 or by e-mail at tigger@tfon.com.
_________
Features Editor Marcie Miller can be reached at 360-417-3550 or marcie.miller@peninsuladailynews.com.
