Susie Bowers is a retired
journalist living in Rehoboth Beach,
a town on the eastern coast of the USA.
She is co-founder of www.copd-international.com,
a non-profit, interactive support site for people with chronic obstructive
pulmonary disease(COPD) and their caregivers.
She writes a weekly online
newsletter and serves as website editor
COPD is not a death sentence by Susie Bowers
“COPD is not a death sentence.”
These are the words of the late Bill Horden, COPD patient advocate and
writer. And these are the words I clung to when diagnosed with
severe COPD in August 2000.
That summer I began to have spells when I couldn’t
catch my breath while doing the simplest of activities. I was
extremely short of breath most of the time, and I was smoking way too many
Following a battery of tests, including a spirometry
and arterial blood gas, my family doctor said, “It’s bad, very, very bad.”
The words didn’t scare me as much as the sombre look on his face and the
sad tone in his voice. “You have severe emphysema,” he said, “which
is progressive and incurable.” The next few minutes were a blur as
he explained the diagnosis, interspersed with instructions for the nurse
to order oxygen to be delivered to my home that very afternoon.
Oxygen! I thought. No, he can’t be serious.
Too stunned to ask questions, I nodded as he referred me to a pulmonary
specialist and told me I needed to be in a pulmonary rehabilitation
That day my life changed forever. In a blink of
an eye, I went from an independent, energetic newspaper editor with a
bright future to a disabled, chronically ill patient, who had to rely on
oxygen at night and medications by day to breath more easily.
I tried to keep up with my fast-paced lifestyle, which
now included 3 days a week at pulmonary rehab, but I couldn’t. I
simply did not have the energy. I took a leave of absence from work and
fell into a deep depression.
I felt like I had become my illness. I had no life of
my own—merely a life of survival—racing from doctor to doctor only to
confirm what I already knew: at age 54, I had end-stage COPD caused by
more than 30 years of smoking. I suffered in silence, wondering how
long I had to live. 3 years? 5 years? I didn’t know and was
too afraid to ask.
After months of living in limbo, I got
downright angry and vowed I would not settle for a life that was defined
by this illness. I turned to the internet to learn all I could
about COPD. The one thing I already
knew was that pulmonary rehab was beginning to work miracles on my
breathing and overall health.
While researching COPD online, I stumbled across the
website of the late Bill Horden, known as the COPD Advocate. His
positive words of wisdom gave me hope that I could not only live with
COPD, but live well by becoming an informed patient and learning how to
manage my disease.
I joined an online support group, where members shared
their experiences on living with COPD. I learned that quitting
smoking was the best thing I could do to slow the progression of my
disease and that exercise was the key to keeping my energy levels up.
I developed an attitude of gratitude, as many members were sicker than I
was. When depressed, I spent time in the chat rooms with people who
knew exactly how I was feeling.
Today my lifestyle does not revolve around my illness.
I have adjusted to the fact that I have physical limitations and spend my
precious energy wisely doing the things that are important and meaningful
to me. I am grateful for what I can do—even on the days when I must
slow down and rest because my breathing is more labored than usual.
My pulmonary function tests are almost the same as when
I was first diagnosed 4 years ago. I attribute that gift to staying
physically, mentally, and socially active and to staying connected to
others who suffer from COPD.
In 2002, I retired from my full-time job with no
regrets and followed my dream of living in a beach cottage on the eastern
coast of the USA, where life is no longer a race to be endured, but a
journey to be enjoyed—one breath at a time.
Vol 364 September 4, 2004