Abstract
Patient-centered outcomes are a critical goal in the management of COPD. This personalized patient account of living with COPD indicates the importance of health-related quality of life (HRQoL) when considering the profound impact of reduced exercise tolerance on activities of daily living. The recognition of breathlessness indicating damage to the lungs from smoking and exacerbations of dyspnea associated with activity avoidance sent this patient to her clinician for a diagnosis of COPD. The eventual acceptance of her condition led to her attendance in a pulmonary rehabilitation program that made a “tremendous difference” for both the exercise and the social support it offered, and it reinforced her determination to maintain her independence and mobility that seem to contribute to a positive attitude in dealing with this challenging disease.
PATIENT'S PERSPECTIVE
I am 65 years old, and have lived my entire life with lung disease. I was diagnosed with COPD at age 60, although it was probably present much earlier. At the age of 9, frequent colds led to the removal of my tonsils and adenoids. Running around playing in the snow triggered a “barking” cough that the neighborhood mothers thought was whooping cough. Looking back now, I suspect that it was actually cold- and exercise-induced asthma. At age 13, I began smoking and smoked regularly by age 15. I felt sophisticated, even though it made me cough. At age 18, I contracted a type of tuberculosis that did not respond to drugs. After 3 months in a sanitarium, surgery was performed to remove the upper lobe of my left lung. Although it was painful, lung surgery allowed me to leave the hospital after 7½ months of confinement. I was also exempted from physical education classes in college, which really pleased me.
Life proceeded normally. I married at age 21 and had three children by age 27. I recall no breathing problems with my pregnancies, probably because I was young and “carried low.” When I was 24, I suffered bilateral pneumonia – the old-fashioned “galloping” type that laid me low within 24 hours of onset. I was told later that I had an 80% chance of dying, but youth again pulled me through.
Smoking was a part of my life since I was a teenager. Almost everyone smoked in the sanitarium, including the patients, doctors, and staff. My husband smoked, as did all of our friends. Most of my later work experience was in hospital settings. Even late in the 1980s, smoking was still allowed in hospitals, and many doctors and staff smoked in the nursing stations.
Studies documenting the negative effects of smoking were not completed and reported until well after many people were addicted (myself included). The damaging effects had already occurred. We smokers didn't believe these reports; if we did, we might have to quit, which we certainly didn't want to do. Not surprisingly, no one suggested that I quit smoking until my mid-30s, when I began to experience recurrent episodes of bronchitis. To me, these episodes were just a continuation of my childhood colds and were resolved fairly quickly with antibiotics. Most colds settled in my chest, an indicator that my lungs were reacting to years of abuse.
A critical event in my mid-50s made me stop smoking. I was in Germany, walking up an incline to visit a castle. I stopped by the side of the road, breathless. An obviously much older woman, pushing a baby carriage, passed me at a quick pace. That sight told me my lungs were really pretty bad, and I never touched another cigarette. Quitting has allowed my damaged lungs to stabilize. Had I continued smoking, it is likely I would not be alive today.
As time passed, I experienced increased breathlessness during work and travel. I adapted and compensated for this by slowing my pace and avoiding activities that would highlight my problems. If anyone asked me about my breathing, I replied that I had asthma.
Eventually, I developed an episode of bronchitis that would not improve despite multiple courses of antibiotics. My primary care physician sent me for a chest CT, and referred me to a pulmonologist. After the pulmonologist reviewed my pulmonary function tests, CT scan and chest X-ray, he told me I had COPD, and that my test results indicated I was 100% disabled. But I was working full-time¡ How could I be disabled?
My emotional reaction to the COPD diagnosis was enormous. () I burst into tears, went home and didn't sleep for 3 days. Because of my hospital work experience, I had heard of COPD and equated it with a death sentence. I really panicked. How could I continue to work and manage financially, never mind how to break the news to my family and friends? Finally, I came to realize that I was still the same person I was before the diagnosis and I calmed down. I continued working as before, telling no one about my condition.
Table 1 The impact of change in exercise tolerance on activities of daily living and quality of life in COPD: A patient's perspective
This method (denial and determination) worked until I contracted pneumonia. I then required oxygen during sleep and exertion. It was impossible to continue my job. Fortunately disability insurance helped with finances during this forced early retirement. Social Security granted me benefits on my first application, probably because of my incontrovertible test results.
Six months of sitting at home reduced me to a much-weakened state. Routine tasks left me breathless. A referral to pulmonary rehabilitation helped me get back into shape and maximize my physical capacities. I continue to attend pulmonary rehabilitation twice a week and now also volunteer at the hospital.
While I have always been pretty active, I have never been an exercise buff. Physical education classes in school frustrated and embarrassed me. I had an athletic build, but no physical skills. Although I still do not like to exercise, I do it regularly to stay strong and remain independent. It's very clear to me that if you don't use it, you lose it.
Pulmonary rehabilitation has made a tremendous difference in my life, beyond getting me to exercise. It provides education, support, coping strategies and a new circle of friends whose problems are similar to mine. For recreation, I enjoy crafts, music and reading. I am very lucky to have interests with low physical demands. My disease does not impair my ability to enjoy them. I am blessed in that I do not have other systemic-type illnesses such as diabetes, arthritis, hypertension or cardiac problems that many COPD patients have.
Still, each respiratory illness that I contract can further damage my lungs. I have had few illnesses since retiring, probably because of lowered exposure to germs. However, I recently was hospitalized for pleurisy and pneumonia (considered an exacerbation). Exacerbations are scary for the COPD patient, especially when your lungs are as limited as mine – there just isn't that much you can afford to lose.
My COPD management requires steroid usage (inhaled and oral). Probably as side effects of the long-term use of these medications, I now have osteoporosis and cataracts. I take a medication that has increased my bone mineral density. Surgery will be required to take care of cataracts. The steroid bursts have also increased my appetite, with related weight gain, which is annoying to me. Weight gain makes a big difference in how I look, feel, and in what I can do. It is much harder to get around with an additional 5–10 pounds. I continually fight the “battle of my bulges”¡ These negative side effects do impact my quality of life as I live with COPD (). I would welcome a replacement for steroids, something that would control inflammation without the negative side effect of tissue breakdown.
I would also welcome any new drugs or procedures that could help assist my breathing; and lighter, smaller equipment to dispense the oxygen that I need. The need to carry equipment associated with the oxygen that I require is also burdensome and makes traveling complicated. Carrying equipment is heavy, cumbersome, and I often need assistance loading and unloading it. I also have to be aware and concerned about tanks running out. Air travel involves a lot more advanced planning – airlines have different allowances and charges that make this option of travel, not a convenience as it is for most, but rather another hurdle to be overcome.
My goals are probably similar to the goals of many patients as they age, but having COPD and its associated limitations, increases the importance of these goals (). First, I want to remain independent. I have three grown daughters, one living close by, but I really prefer to manage my life without troubling my children. They have their own lives and their own needs. I was lucky to get long-term care insurance before my COPD was diagnosed, so my children will not have to take care of me when I become severely ill.
Table 2 Goals for living with COPD: A patient's perspective
Second, I'd like to remain mobile for as long as possible. Mobility, to me as a COPD patient, means being able to get around my home and do household chores, such as bed-making and laundry. Outside the home, I want to continue to drive myself around, shop for groceries, make doctor visits, and do errands unassisted. Finally, I want to stay well and out of hospitals, except as a volunteer¡*
What would I tell the newly diagnosed COPD patient?
First and foremost, don't let fear and panic rule your life. Keep in mind that everyone living is going to die sometime—the only difference is that we have some idea of how we'll go. Just because there is no “cure” for COPD doesn't mean there aren't ways of living with it and still enjoying life. Your goal should be to get as much out of life as possible, for as long as possible.
Live in the present—don't worry about the future. Actively seek out as much information as you can about COPD and how to cope with it. I found the American Lung Association and the Internet a good place to start. There are several online support groups for COPD patients. Joining a Better Breathers group was a big benefit to me.
Ask your physician about beginning a regular program of exercise, such as pulmonary rehabilitation. In my case, the staff evaluated me, created a personalized strengthening program and continually monitored and encouraged me throughout the program. I was also provided education on all aspects of COPD. As an ancillary benefit, you will probably meet many others with COPD. Everyone shares their coping tips and tricks.
Don't let the inconveniences associated with COPD stop you from living. Stay involved in social activities. Don't worry what people might think of your oxygen tank—they will still enjoy your company, whether or not you are wearing a “nose hose.”
Develop hobbies that utilize your strengths, rather than highlight your weaknesses. In other words, learn to do a slow waltz rather than insisting on doing a jitterbug. Join a mall-walking group rather than signing yourself up for a marathon race.
Explore possibilities for volunteer work—the people you assist will be truly grateful and will help you find ways to contribute.
As one who loves music, I am prone to find songs for every occasion. My song for COPD is “I'm Gonna Live Until I Die”:
I'm gonna live until I die; I'm gonna laugh until I cry
Until my number's up, I'm gonna fill my cup
I'm gonna live, live, live until I die.
*Editor's Note: Although strong correlations between measures of exercise tolerance and activity have been difficult to demonstrate and vary considerably using generic, or disease specific health related quality of life (HRQoL) and activity specific instruments, improving patient-centered outcomes is clearly an important goal in the management of COPD patients. Indeed, it is clear that what is of paramount importance to Mary Ann, as a COPD patient, is what she refers to as independence and mobility. Based on the presentations in this symposium, Mary Ann's goals might medically be referred to as her ability (functional capacity or exercise capacity/tolerance) to perform basic, instrumental and extended activities of daily living that allow her to continue to live independently. And, as Mary Ann notes, interventions that improve exercise tolerance such as pulmonary rehabilitation, do provide benefits for the COPD patient.