Johns Hopkins Bayview News - Harnessing COPD
Date: February 3, 2014
Treatment helps patients get back to life
Jane Cloud remembers the day a decade ago when she realized something wasn’t right. “I had been visiting Harper’s Ferry with friends,” recalls the 69-year-old. “My friends were ahead of me at the top of a set of steps. I ran up the steps to catch up, and I just collapsed. I couldn’t catch my breath and I had no idea what was going on. I considered myself a healthy person and in good shape.”
A few days later, Cloud’s primary care physician referred her to a pulmonologist (lung doctor) for lung capacity testing called spirometry. Her lungs were functioning at only 50 percent. She was diagnosed with chronic obstructive pulmonary disease (COPD).
COPD is a progressive lung condition that affects the airways and air sacs in the bronchial tubes, as well as the thousands of smaller, thinner tubes that branch off of those, called bronchioles. The disease inflames and narrows small airways and destroys delicate air sac walls, making it harder and harder to breathe.
“Normally, it isn’t until about 50 percent of a person’s lung capacity is gone that they feel something isn’t right and go to the doctor,” explains Robert Wise, M.D., a pulmonary specialist at Johns Hopkins Bayview Medical Center. “This has always been a concern, because COPD is very easy to diagnose early on with a simple spirometry test.”
Nearly 13 million adults in the U.S. have COPD. Even though she was among millions, Cloud’s diagnosis left her feeling isolated, overwhelmed and scared of a condition she’d have to deal with for the rest of her life. “I went into total denial,” she remembers. “You think to yourself, ‘I'm different. This isn’t me. I'm going to heal.’ But, I can tell you from experience, the sooner you can acknowledge it, the better off you are.”
Five years later, after two long bouts of pneumonia, Cloud admitted she had to take control of her disease. She gave up smoking and worked with her primary care physician and specialists in pulmonology, including Dr. Wise, to learn as much as she could about COPD and how she could best manage it. “We perform best when we work in partnership with a primary care doctor,” explains Dr. Wise. “We can then provide a coordinated approach.”
The pulmonary clinic at Johns Hopkins Bayview brings together a specialized staff to streamline each aspect of care. In addition to physicians with expertise in COPD and a variety of other respiratory conditions, a respiratory therapist educates patients on their respiratory status, as well as breathing techniques and equipment (i.e. nebulizers, oxygen therapy devices) that can improve their breathing and lifestyle. A senior nurse coordinator focuses on further educating patients on their disease and health, as well as preventive care.
Pulmonary rehabilitation, an outpatient exercise and education program designed for patients with breathing disorders, also plays a vital role in taking control of COPD. This is where patients can put the techniques they’ve learned to use.
“Pulmonary rehab combines exercise, education and support,” explains Marlene Dougherty, a RRT, pulmonary rehabilitation coordinator at Johns Hopkins Bayview. “Patients learn and practice techniques to help manage their symptoms, stay active and use their respiratory medications properly. They also meet with a dietitian to assess their nutritional needs. These are tools that can really improve the patient’s overall quality of life.”
Dr. Wise adds that the real key to controlling COPD, or any chronic disease, is gaining as much knowledge about your condition as possible and learning about all the resources available. This will enable you to self-manage and be an active partner in your care.
Adapting to Your New Life
“Find a doctor you’re comfortable with,” Cloud encourages. “I found Dr. Wise later in my life. He’s wonderful to talk to and keeps me in the loop on new treatments and options. If you don’t have someone you can talk to, you’ll remain isolated and on your own, and not make much progress.”
“I encourage people to live the life they’re capable of,” she adds. “There are things I can no longer do, but it’s like anything else in life—you have to adapt and continue living.”
Cloud recently found a portable oxygen device that allows her to more easily travel and take part in activities she hasn’t been able to enjoy in over a decade. “I scheduled a fishing trip with my family. I absolutely love fishing, and haven’t been since before my diagnosis. But I have the knowledge and skills I need to control my symptoms and, most importantly, amazing family support.”
For more information on pulmonary medicine or to schedule an appointment, call 410-550-LUNG (5864) or visit hopkinsmedicine.org/pulmonary.
Stay Ahead of COPD
COPD is almost always caused by smoking. Other risk factors include family history and living or working in areas with poor air quality. The most important things you can do to prevent COPD include:
- Not smoking.
- Avoiding secondhand smoke, as well as any area with poor air quality.
- Talking to your doctor about spirometry testing, especially if you have these other risk factors. You’ll be able to learn about your lung function and catch any lung capacity issues early.
Johns Hopkins Awarded $2.1 Million to Improve Post-Hospital Care for COPD
The Johns Hopkins Armstrong Institute for Patient Safety and Quality has been awarded $2.1 million to develop, implement and study a program that better supports people with COPD following hospitalization.
Many with COPD are hospitalized or treated in the emergency department due to sudden, serious worsening of symptoms, known as exacerbations, which cause difficulty breathing. Too often, they are never asked whether they need help at home before they’re discharged, and never told what symptoms to monitor in order to prevent subsequent hospitalizations. Therefore, they wind up back in the hospital shortly after.
The research program will focus on those hospitalized at Johns Hopkins Bayview Medical Center for COPD exacerbations. These patients and their families/caregivers will receive education on COPD, symptoms to look for and self-management skills during their time in the hospital, and will get repeat calls or home visits from a nurse case manager in the three months following their hospitalization. They also will be connected with community-based resources, such as transportation services enabling them to attend follow-up medical appointments.
Hanan Aboumatar, M.D.,MPH, principal investigator for the research program, explains, “The goal is to develop ways to advance the patient’s and their loved ones’ capacity to handle their illness and provide the tools and support they need.”