When breathing isn't easy: Living with COPD

Posted: 7/16/2010

From Northwest Herald:

Alice Nulle of Woodstock has been attending regular rehabilitation sessions for five years, dealing with the effects of a disease that is the fourth-leading cause of death in the country, according to the Centers for Disease Control and Prevention. But she still spends time explaining what the disease entails to people she encounters.

“When you say you have COPD, a lot of people say, ‘Well, what’s that?’ ” Nulle said.

Of the estimated 24 million people living with chronic obstructive pulmonary disease in the United States, only half are diagnosed, said Eileen Lowery, manager of the lung health initiative for the Respiratory Health Association of Metropolitan Chicago.

COPD is a combination of two main conditions – emphysema and chronic bronchitis. Individuals with the disease struggle to breathe and often develop a cough, wheezing and chest tightness, the conditions worsening with time.

“People don’t notice the symptoms because they are kind of insidious,” Lowery said. “They don’t ask their physicians to test them for COPD, so they don’t know they have it.”

That was true for 79-year-old Nulle, who had noticed a shortness of breath for years. But when the air at an estate sale she was running brought on a deep cough, Nulle decided to get it checked out.

In August 2005, she was diagnosed with COPD.

Like most people who contract the disease, Nulle had been a longtime smoker. She smoked for 30 years, but quit in 1979.

Lowery said 80 percent to 90 percent of COPD patients at one point had been smokers. Nonsmokers who contract the disease often have been exposed to excessive secondhand smoke or other pollutants, according to the Respiratory Health Association of Metropolitan Chicago’s website, www.lungchicago.org.

Lowery said a genetic disorder known as Alpha-1 antitrypsin deficiency was the cause of an additional 6 percent of COPD cases. The lack of Alpha-1 antitrypsin allows an enzyme called neutrophil elastase to attack healthy lung tissue, according to Alpha-1 Association’s website, www.alpha1.org.

Scientists are trying to determine who could be more susceptible to the disease.

“They’re doing research to find out,” Lowery said. “They’re finding that people might have a predisposition to chronic bronchitis and emphysema.”

COPD is a progressive disease, meaning that it constantly gets worse. To this point, no cure has been discovered, so those who are diagnosed must find a way to deal with the symptoms.

“When you have a hard time breathing, it can be very anxiety-producing,” Lowery said. “It’s not an easy thing to live with, because when it’s hard to breathe, it’s hard to be active and enjoy your family and all that.”

Identifying it early can help those with COPD get started down a path to live longer and more normal lives by slowing the progression of the disease.

COPD can be treated with medication, exercise, oxygen therapy or surgery depending on the case’s severity, according to the Respiratory Health Association of Metropolitan Chicago.

Liz Frankenfield has been a nurse in the pulmonary rehabilitation center at Centegra Hospital – Woodstock for 10 years. The center has a 12-week program for COPD patients to help prolong their lives and improve their quality of life through exercise.

“It goes against the norm – when people can’t breathe, they feel like they need to sit down,” she said. “And we are getting them up and moving.”

The program is aimed at forming habits that patients will continue past the 12-week program, either on their own or by staying at the rehab center for a monthly fee.
Frankenfield said almost all of the patients experienced improvement in their endurance, which could mean all the difference – making it possible to walk to the mailbox or do their own grocery shopping.

For Nulle, the program – and spending some of her off days on the treadmill at the Woodstock Recreation Center – has allowed her to continue living a life full of activity.
“I’ll be 80 years old next year, but I want to figure out a way to go skydiving again,” she said. “I went on my 75th birthday.”

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