This presentation was made by EFFORTS member Polly Taylor on May 22, 2012 in the AM session of the 2012 American Thoracic Society Meeting.
(Polly ATS 5/22 p.m. Gerard Criner, Hyperinflation)
Good afternoon. My name is Polly Taylor. I want to thank you for inviting me here to talk today. I appreciate the invitation and your attendance. I have been asked to convey to you what it is like for me to live with shortness of breath, as I have for most of my life.
I had life threatening asthma attacks from the age of 5. It was in 1995, when I was 65 years old that I was diagnosed with COPD.
Now Iíll be 83 next week and Iím a COPD success story. My ďsevereĒ diagnosis gave me a lifr expectancy of five years. Itís been 17. I can breathe and walk for a number of blocks or I can breathe and talk pretty much nonstop. Once I eat a meal Iím limited to breathing and digesting. Breathe and walk, breathe and talk, breathe and digest. Forget about chewing gum. Iím strong and can lift things but I canít carry anything significant, such as groceries, for any distance.
To present life with hyperinflation to you, let me walk you through my morning. I get up early, go to the bathroom, weigh myself as a check on edema, put on sweats, and pull the bed together to make space in my bedroom. (Remember Iím a dog on a leash. Whatever Iím doing I trail an oxygen hose, trying not to trip over it or entangle it on the furniture.)
I go out to the kitchen and do what I call my chimpanzee thing, knuckles on the table, chin out, pursed lip breathing to get my breath back. I get my breakfast together because if I donít eat soon I get a miserable headache. I take the first of the morningís pills and check on my peak flow meter while breakfast heats. Then I sit down and look out the window for a while because if I try to eat when Iím short of breath I risk aspirating. After breakfast I sit for half or three quarters of an hour Ė usually I read email or do computer puzzles Ė to let my food digest and avoid reflux from breathing deeply when I do inhaled drugs.
Next I set up the dayís pills and do my nebulized meds Ė setting up the machine, running it with two vials of medication and using an inhaler in between. Then rinse my mouth, gargle, and eat some yogurt, all to protect from thrush. Finally, I clean up the equipment. I need to sit and recover once more before I shower, another elaborate chore of rearranging my hose and resting between steps. And I get dressed and load my portable oxygen.
So I got up, got breakfast, washed, and dressed and Iím ready for the day. I think all that used to take me half an hour, or an hour if I lollygagged. Now itís been four and a half to five hours. I canít begin to tell you how frustrating that is. Or how painfully short my window is to be active, to get in some exercise or go walking. Or how totally exhausted I am the next day if I have pushed to do more. Iím moving very slowly now, almost never venturing out in the evenings, and it feels as if a lot of life is going right past me.
Of course weíre all different, all the millions of us with COPD. But I think most of us would recognize much of what Iíve described. For the medical professions, when patients present with shortness of breath itís a sign of an underlying problem that takes differential diagnosis and formulating a treatment plan. Weíre truly grateful for that. Dyspnea is also a symptom which you all work to relieve and thatís also a great help. But for us being short of breath is, at the end of the day as at its beginning, a whole frustrating, exasperating, miserable way of life.
And all of that is why Iím so glad so many of you are working on ways to make life easier for COPDers.
Again, thank you for asking me to tell my story!
Email and phone number omitted. If you wish to contact Polly, send an email to email@example.com.