When I ran out of air and into Harrison Hospital in 1997, life, as I had known it for 56 years was over. No one said so, but I believed I was dying, stopped a 40-year smoking habit, learned the agony of an addiction, and gained a tough to lose 100 pounds over the following 2 years.
The purpose for this blog is to give information to patients and family from the perspective of a patient…not to dispense medical advice. With information and dialog, no one should waste the years I did in ignorance waiting to die. I could not breathe so gradually spiraled into doing nothing but take care of my dogs and look for answers in the computer.
Excluding medical care, finding my on-line advocacy and support group, EFFORTS (Emphysema Foundation For Our Right To Survive) www.emphysema.net saved my life. I learned patient advocacy and began writing to my legislators and others protesting the lack of public knowledge about a disease that was killing enough people to become the fourth leading cause of death in the U.S., 5th in the world, and climbing. COPD is expected to reach the dubious honor of third leading cause of death in the U.S. by 2020.
It seemed no one knew or cared about COPD…the diagnosis thought to be the end of the line… untreatable other than with inhalers developed for asthma patients.
I learned through EFFORTS that I could help myself, learned the value of exercise and the fact muscle utilizes oxygen better than flab. I bought an oximeter and learned PLB (Pursed lip breathing) to keep me out of the ER.
In 2006, I leaned about and qualified for the outstanding 6
month Shortness of Breath – Exercise Study which was conducted at
the University of Washington. (More on their latest study later –
or check it out online at http://www.managesob.org/ )
I have met amazing and incredibly dedicated people devoted to medicine and research…people in professions I had not known existed in my formally physically- fit life.
While online one day, I found the American Lung Association of Washington’s Big Ride Across America, fell in love with the dream, but knew I couldn’t make such a ride … I hadn’t been on a bicycle in 50 years. Then I discovered recumbent trikes and KNEW I could make this ride someday, that somehow a miracle would happen.
I bought a recumbent trike and in 2005 made the three- day American Lung Association of Washington’s Trek- Tri Island…the first time since 1997 I had been anywhere overnight…much less taking a tent and putting it up. (I was amazed to be out in the world again – maybe not horse packing alone in the Cascades as in the old days- but outdoors and pedaling, I felt ‘normal’ again)
I pedaled 50 miles of the 137-mile trip over the course of three days, thanks due entirely to the Trek’s volunteers. They drove me and my trike out ahead of the other 300 regular bike riders and I pedaled, huffed, and puffed my way until the others gradually caught up and passed. I went again in 2006 but the air was heavy last year…overcast, humid…tough breathing, made me even slower. I felt guilty that the wonderful volunteers spent so much time helping me get around.
My plan now is to take one or both dogs and pedal across the U. S. following the ALAW’s Big Ride Across America route from Seattle to Washington D.C. This year didn’t work out so I’ve rescheduled my ride for May 2008 (did not make it)…following the 3rd annual COPD trike race in Wasco, OR….trophies, ribbons to 6 places, as well as cash prizes.
My original diagnosis of COPD (Emphysema) occurred about 1995. Since 1997 I have been diagnosed with five additional diseases … including arthritis in 2006. For what it’s worth, the only time I am not in pain from the arthritis is when I am on my trike pedaling.
I accept full responsibility for my posts… made with the intent to inform and educate from this patient’s point of view and experience … not as a medical person.