Louise Chang, MD
Chronic obstructive pulmonary disease. Quiz the average person on the street, and how many could tell you what it is? Would you know that it's the 4th leading cause of death in the United States? Not likely. But that is one of COPD's unfortunate claims to fame.
A serious and progressive lung disease diagnosed in more than 13 million Americans, COPD develops when lungs become damaged from smoking and sometimes from heavy exposure to pollution, chemicals, or dusts. Genes may also play a role in the development of the disease.
COPD causes airways to become partially blocked, making it very hard to breathe. You can't reverse the damage it causes, and COPD has no cure. But you can do many things to slow its progression and live a longer, higher-quality life.
Diagnosing COPD is not a complex process. Combined with a medical history and physical exam, an easy, painless breathing test called spirometry can confirm the diagnosis. A machine called a spirometer measures how much air your lungs can hold and how fast you can blow air out of your lungs after taking a deep breath. You may need extra tests to rule out other problems or to plan treatment.
Typically, people with COPD wait a fairly long time before getting diagnosed, says Norman H. Edelman, MD, chief medical officer for the American Lung Association. Their breathing becomes more labored, but they learn how to compensate.
Besides shortness of breath - often with activity - other COPD symptoms that may prompt a visit to the doctor are coughing, wheezing, excess mucus, or chest tightness that won't go away.
Because the symptoms develop so gradually, says Edelman, "People often think, 'I'm just getting older or I've put on a little weight.' Then they hear, 'No, this is a real disease.'" So the diagnosis of COPD often comes as a shock.
Adding to the shock is stigma. "Most people who are diagnosed are smokers," says Edelman, "So there is also this sense that 'I brought it on myself.'" For this reason, it can be harder news to receive, he says.
John J. Reilly, MD, is acting chief of the pulmonary division at Brigham and Women's Hospital. "When I trained in medicine, we were basically seeing old white guys at the VA," he says. "Now, thanks to the Virginia Slims era, more women than men died of COPD in 2000."
Deb Hannigan may be from the Virginia Slims era, but she's doing all she can to stay healthy and alive and to spread awareness about COPD. Now 52, she was diagnosed at age 34, younger than most with the disease. Diagnosis is more common in those over age 40.
Because she was a medical records coder at a hospital at the time, she had some idea of what COPD was. But it wasn't until her diagnosis that the whole picture came into focus. As is true for many, Hannigan learned that she had both of the main COPD diseases - chronic bronchitis and emphysema.
Since diagnosis, Hannigan's life has changed in many ways. "Everything takes you longer, you can't keep up," she says. "It's a huge effort and you become very short of breath just doing the basics -- taking a shower, getting dressed, trying to get out to do what you have to do. By the time you're ready to go, you don't want to do it. A lot of people just give up."
Reilly agrees. "This disease is insidiously progressive," he says. "It gradually curtails people's physical activity. Being out of breath is a miserable sensation, so people avoid the activities that make them out of breath." Gradually, they become homebound or less willing to travel, he says, experiencing a major impact on their quality of life.
For Hannigan, some limitations were imposed by her doctor, who told her to stop working when she was just 39 - an order she only partly followed. Now on disability, Hannigan volunteers for COPD International 10 to 12 hours a day. In 2002, she became one of the founding members of this nonprofit organization, which is dedicated to providing information and support to people with COPD and others affected by the disease.
Through her own personal experience and that of others living with COPD, Hannigan has seen how the invisibility factor adds insult to injury. "Sick lungs don't show," she says. Reilly says that people can seem perfectly fine while at rest, but they run into trouble quickly when they become more active. "Other people don't understand how sick they really are."
But understanding this is critical, especially since family members need to stay alert to potential complications. If a loved one gets sick with a cold, cough, or fever, it's important to intervene early, says Reilly, particularly if they have severe COPD. "Don't wait for a few days, as you would with someone who is generally healthy." Lung infections can quickly spell trouble for someone with COPD.
To manage the disease, the best step to take -- hands-down -- is to quit smoking.
"This is the one intervention that has clearly been shown to influence the natural course of the disease," says Reilly.
"In the short term, people feel better almost immediately," adds Edelman. "In the long term, their rate of decline in lung function also slows. It literally adds years to their lives."
Pulmonary rehabilitation is also often a big part of the treatment plan for people living with COPD. A wide variety of health care professionals - such as doctors, respiratory therapists, registered dietitians, or nurses -- can provide counseling about nutrition, information and resources for disease management, and exercise guidelines, for example.
Diet and exercise are essential to successful management of COPD.
Just to breathe, the breathing muscles of a person with COPD burn 10 times the calories of other people. For those living with COPD, getting enough calories is important to maintain energy, prevent infections, and keep breathing muscles strong.
And exercise, including specific breathing exercises, can help in many ways, even though it can feel counterintuitive to do something that may cause some shortness of breath. These are just a few of the benefits of exercise for someone with COPD:
Reilly says that improvements in COPD treatment over the years have made a major difference for people living with the condition. Today, doctors prescribe two main types of medication for COPD. Bronchodilators can help widen airways and corticosteroids can reduce airway swelling. Antibiotics may be needed to treat infections.
A new class of drugs inhibit an enzyme called phosphodiesterase type 4 (PDE-4). Daliresp is one such drug that prevents COPD flares in people whose condition is associated with chronic bronchitis. Daliresp is not intended for other types of COPD.
Oxygen treatment is a therapy that has dramatically reduced mortality, says Reilly. This therapy is often prescribed for people who cannot get enough oxygen from the air on their own. Edelman adds that oxygen therapy improves the heart and muscles, and with more fit muscles, you can do more.
When the opportunity arises, Hannigan uses her oxygen tank as a teaching tool with young children. She tells them, "This is what will happen to you if you ever start smoking."
Surgery is also an option for those with severe COPD. In rare cases, a surgeon may perform a lung transplant, replacing a diseased lung with a healthy one from a donor. Lung reduction surgery involves removing sections of damaged lung tissue. In the future, this surgery may be done as a minimally invasive procedure, rather than as an open surgery with a large incision. Reilly says clinical trials are currently studying this and other ways to improve treatment for COPD.
Reilly encourages people to become involved in COPD research studies like these. Currently, though, recruitment for COPD research is a challenge, he says. "But if we're going to move the field forward, we need to get people with COPD to participate in trials."
To the people who are afraid of diagnosis, Reilly says, remember that there are effective treatments out there. "It makes sense to be evaluated to see if you have it, and to get on the right therapy if you do."
Says Hannigan, "When you start having shortness of breath that is not normal for you, tell your doctor. The earlier you find it and the faster you stop smoking, the faster you can stop the progression of the disease and the longer life you have to live."
As with any chronic disease, says Edelman, keeping a positive attitude is paramount.
Hannigan couldn't agree more. "Attitude is everything," she says. A serious disease? Absolutely. "But it's not a death sentence."
SOURCES: News release, FDA. CDC National Center for Health Statistics: "Chronic Obstructive Pulmonary Disease." National Heart Lung and Blood Institute: "COPD." American Thoracic Society and European Respiratory Society: "Standards for the Diagnosis and Management of Patients with COPD." Cleveland Clinic: "Nutritional Guidelines for People With COPD" and "COPD Exercise and Activity Guidelines." American Association for Respiratory Care: "Exercising Safely with COPD." Norman H. Edelman, MD, professor of preventive medicine, internal medicine, and physiology & biophysics, Stony Brook University; chief medical officer, American Lung Association. Deb Hannigan, co-founder of COPD International. John J. Reilly, MD, acting chief of Pulmonary Division at Brigham and Women's Hospital; investigator for the COPD Clinical Research Network of the National Heart Lung and Blood Institute.
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