Living With COPD

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I was diagnosed with COPD (chronic obstructive pulmonary disease) in January 1999 after spending six weeks getting over pneumonia. It was at a follow-up visit that my primary care doctor said, while listening to my lungs, “I don’t hear much.”After all those weeks of coughing, wheezing and gurgling when I breathed, I thought that was a good thing. It was a surprise when he said, “No, it isn’t a good thing.

He had already taken X-rays and checked my oxygen levels. He said he thought I had COPD. At my puzzled expression, he explained what COPD is, but all I caught was the word “emphysema.” I vaguely thought of an old man with a walker and oxygen and decided the doctor was wrong. How could I have emphysema? I was still relatively young and healthy. He encouraged me to see a pulmonologist and quit smoking, and he signed me up for pulmonary rehabilitation.

I left his office in shock and partial denial—I say “partial” because, like many smokers, I was always waiting for the sky to fall. Aside from feeling weak from the pneumonia, I felt fine and healthy. I had two children, one an undergraduate in college and one working on her master’s, and an aging mother, who needed me. I also owned a small business that had finally turned profitable after years of struggle. I needed to be well.

After much research and a visit with a pulmonologist, I began to understand the seriousness of my COPD. I joined a pulmonary rehab group and continued to educate myself about my disease, which was a bit of a challenge 13 years ago. There was little information available. I felt truly alone and very afraid, so I set out to take more control over my disease. I quit smoking, which was one of the hardest things I have ever done, and took my medications as prescribed. When pulmonary rehab was over, I continued to exercise and eat nutritiously. These helped me feel significantly better.

During my first few years with COPD, I became involved in speaking with others about COPD and working with organizations that asked me to help spread awareness.

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.

When COPD Is the Diagnosis

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.

How to Treat COPD

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 coughingwheezing, 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.

A Visual Guide to Understanding Bronchitis

  • Chronic bronchitis causes swelling of the airways. This makes airways narrow, which obstructs the flow of air. Chronic bronchitis also results in excess mucus production, which causes cough and further obstruction of air movement in and out of the lungs. Chronic bronchitis is diagnosed when a person reports cough and mucus on most days for three months during two consecutive years and when other conditions for cough have been eliminated as the cause.
  • Emphysema damages the air sacs in the lungs. Normally, these tiny balloon-like structures allow the passage of gases (oxygen and carbon dioxide) from the lungs to your blood and back out. The air sacs are normally elastic and stretch when filled with air. They spring back to their original shape when they empty after taking a breath of air. Damage to the air sacs from emphysema makes them less elastic so that it becomes difficult to push air out of the lungs. This causes air to be trapped and airways to collapse, leading to obstruction of air flow and difficulty breathing.

The Many Challenges of Living With COPD

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.

Managing COPD With Exercise and Diet

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.

Getting the COPD Treatment You Deserve

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.”

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