Personal Account    

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 cigarettes.

     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 program.

     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.

www.thelancet.com
Vol 364 September 4, 2004