COPD: A life challenge Mary Grauerholz introduces us to
the experiences of people living with COPD and of people who love
and care for them. In related articles and resources we explain
and expand the ideas in the story. Readers can use these resources
to understand and cope with COPD. Please be aware that each person
is unique and their treatment plan is an individual prescription.
Use what you learn here to work closely with your doctor and other
COPD: A life challenge
A diagnosis of Chronic Obstructive Pulmonary Disease doesn't spell
the end of an active life, but it must be dealt with effectively
By Mary Grauerholz
"Herb Cowles knew something wasnt right. His breathing was
labored, and the sound of his breath as he exhaled was too noticeable
to be normal. But denial ran strong in his blood. It was the late-1980s,
Cowles recalls, and he was in the midst of what many consider the
prime years of life, his fourth decade. He had a busy life, working
as a railroad conductor and participating in a theater group and
other social activities with his wife, Kathryn.
was the theater that finally provided the opening for Cowles
recognition of his health problems. When he and Kathryn attended
performances, he recalls, other patrons in the darkened theater
could hear his labored breathing. As much as Cowles tried to ignore
it, Kathryn became self-conscious. "She said everyone could hear
my breathing," Cowles says. Kathryn encouraged him to seek help,
but he countered that he just needed to lose a few pounds, get in
shape. The gradual onset of his disease made it easy to ignore,
but not for long.
In November 1988, at the age of 45, Herb, a nonsmoker at the time,
was diagnosed with Chronic Obstructive Pulmonary Disease (COPD).
Even then, denial continued its hold. "I wasnt overly concerned,"
Cowles says. "I didnt think it was anything too bad, because
I was still fairly early in the disease. Since then," he says with
a rueful chuckle, "it has changed a good deal."
COPD is an umbrella disease that refers to permanent lung damage
in which there is an obstruction to air flow during exhalation.
It is usually caused by longterm smoking. Emphysema is the most
common form of COPD, although the disease also encompasses chronic
bronchitis and asthma. According to the National Lung Health Education
Program, (NLHEP) smoking is responsible for 90 percent of COPD;
other causes include serious infections, chemical exposure, and
an inherited defect called Alpha-1 antitrypsin deficiency emphysema.
This condition causes the lack of material that protects the lung.
Response, treatment and rehabilitation
Herb Cowles retired three years after his diagnosis and now lives
in Dennisport, Mass. Cowles doctors determined that his COPD
was from occupational exposure to diesel fumes. His smoking habithe
smoked from age 25 to 36also may have played a role. Since
his diagnosis 12 years ago, Cowless disease has worsened,
but lifestyle enhancements are helping to allay the effects. Whereas
12 years ago his breathing was not affected enough to qualify him
for a handicap sticker for his car, he now easily qualifies, he
says. He requires more inhaled medication, and his overall stamina
He measures the progression of his COPD by his abilities rather
than his disabilities. "I get around. I can participate in daily
activities," Cowles says. "I just dont have much stamina.
If I walk up a flight of stairs, I get winded." He offsets this
lack of strength with a pulmonary rehabilitation exercise class
three days a week at a local hospital that consists of treadmill
walking, stationery bike riding and non-aerobic exercises sitting
in a chair. People in the Cape COPD Support Group know Herb Cowles
as a warm, compassionate, upbeat-but-realistic individual with COPD.
Getting good care and finding support
Dr. George Holmes, an internist with Harvard Vanguard Medical Associates
in Braintree, Mass., diagnosed Herb Cowles. Dr. Holmes still treats
patients with COPD and sees each one as unique. "I treat them all
as individuals," Dr. Holmes says. "Many things, many problems are
associated with COPD." He educates his patients as treatment continues,
working through each unique set of symptoms. "Dr. Holmes diagnosis
and follow-up were right on target," Herb Cowles says. "As I look
back, Im pleased with the way the doctors handled it," he
says. However not everyone with COPD is as lucky at getting good
care as Cowles. They may have to seek a diagnosis, search hard for
a doctor who teaches them about their condition, and work to obtain
access to pulmonary rehab and to a support group.
Information and education are the keys
People newly diagnosed with COPD should make sure the diagnosis
is accurate and complete. Information about diagnosis and treatment
for people with COPD is presented in Courage and Information for
Life, a handbook for people with COPD.
Experts in COPD treatment suggest that people who have been diagnosed
with COPD should make sure they completely understand what it really
means. While at first it may appear to be a devastating message,
much can be done to improve all aspects of the disease. They should
obtain materials from other sources and talk with their physician
and others with the same problem. If all the items don't match up
or you cannot get the answers you require, they should get a second
opinion to be sure they have a correct diagnosis. But once sure
that the diagnosis is correct, an aggressive treatment plan is needed.
A treatment plan may involve prescription medications, smoking cessation,
exercise, and more. The earlier the person with COPD can discover
the disease, the better the chances for a relatively healthy life.
The American Lung Association, which works to prevent lung disease
and promote lung health, offers a range of pamphlets and brochures
to the newly diagnosed COPD patient. "The packet is tailored to
the individuals needs and might include information on COPD,
medications, and lung diseases in general," Topham says. Another
source of information is available through the National Jewish Medical
and Research Center, a leading center for pulmonary diseases; anyone
can call their toll free line to talk with to a nurse or respiratory
"Other people with COPD are also a good source of information,"
Herb Cowles says. "Join a support group. The most important point
is education," he advises. "Support groups also enable patients
to advocate for themselves," he says. "I had very good medical help,
but not everybody is going to get that," he says. "However," he
notes, "dont expect a support group to be a completely optimistic
experience. You get the downside too, because you see how bad youre
going to get," Cowles says. "Its unfortunate and may make
you feel bad, but its educational." He joined his first support
group, a nurse-staffed group at Massachusetts Respiratory Hospital,
in 1990. He is currently a member of the Cape COPD Support Group
which serves people on Cape Cod. Local hospitals and pulmonary rehab
programs may organize education and support groups. The American
Lung Association has a roster of Better Breather support groups,
says Kristin Topham, community program coordinator for the Massachusetts
Another patient advocate, Bill Horden, reaches out to everyone
with COPD through the COPD Advocate and newsletter, seeking to educate
people to a better understanding of COPD while offering a critical
view of current medical and political constraints on treatment.
Celeste Belyea began publishing The Pulmonary Paper to support
and educate people with COPD and other lung diseases, 11 years ago.
Today she serves 10,000 subscribers from her office in Ormond Beach,
Fla. Belyea, a registered nurse and respiratory therapist, encourages
those with COPD to stay involved with life and loved ones. "They
should learn as much as they can about COPD and stay involved,"
she says. "I cant tell you how important that is. I have seen
some people get the diagnosis and never leave their house again,
except to go to the doctors."
The importance of families, friends, and support groups
Kathryn Cowles, Herbs wife, knows well the effects of COPD
on families. "It certainly totally changed our lives. I became the
breadwinner," she says. Kathryn Cowles is an assistant chief probation
officer for the Commonwealth of Massachusetts. "Personally our lives
changed, our dreams of retirement. And what we can do day to day,
because we dont know how hell be. Its like when
you like to dance, and the dance stops." Herbs disease has
also given her life an element of the unknown. "Most people dont
know what tomorrows going to bring, but this is in your face
Being around other people with COPD is a powerful step to staying
well and can give a shot of courage. According to experts, the most
important and first step for the newly diagnosed is to quit smoking.
People with COPD have to give up smoking, and avoid contact with
The prognosis for most people is very good. Depending on how far
the disease has progressed when they are diagnosed, their age, and
their determination, they can live with this disease for 20, 40,
or more years. If they do the right things, they can slow the progression
of the disease and many can live out their normal lifespan.
Resources for COPD: A life challenge
The following links provide references and resources to the issues
discussed in this story.