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Ph: 1–866–END–COPD
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Pulmonary Rehabilitation Across the Spectrum of Illnesses For Patients with COPD
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 a.m. Carolyn Rochester, Rehab)
Good morning. My name is Polly Taylor and
I’ll be 83 years old next week. I want to thank you for
inviting me here to talk about what Pulmonary Rehab has meant to me and for
attending my presentation. Thanks especially because one
of the ways that I get a handle on this disease is by exploring the huge amount
of information that I need in order to keep a decent quality of life. I
was diagnosed with severe COPD 17 years ago and I am still walking and talking
(although not both at once) so I am a COPD success story.
Specifically, in addition to medications, I am a Rehab, keep-it-up hab
success story.
I had severe
allergic asthma from early childhood. It was reasonably controlled
through my 40s and 50s. Then in my early 60s I had
several bouts of whatever was going around and when they cleared up I found
myself short of breath with very little exertion. I had neither money nor
insurance so I had minimal medical advice. I was x-rayed, told I did not
have emphysema and given a diagnosis of exercise-induced asthma and an albuterol
inhaler. So I stopped exercising. I
lived in what is considered the flat part of San Francisco but before long,
while I could walk three blocks down to the corner store, I couldn’t walk back
and I couldn’t lug my laundry without gasping and looking for the nearest place
to sit.
At 65 Social
Security and Medicare kicked in and I made an appointment with the pulmonologist
I still see. He made the diagnosis and told me COPD was progressive,
irreversible, incurable, but with treatment options. I
immediately asked about exercise. He said, “Do as much as you
can” and I did.
I never had the
insurance for a formal rehab program but with the help of the doctor and his
staff, I cobbled one together. I enrolled in a research study
that included much of the standard rehab education and coaching, I learned about
medications, and I joined online support and information networks. After
I had a heart attack I had cardiac rehab in a department that also has a
pulmonary program and could tailor it for me. I learned first-hand about
exacerbations and the exasperation that follows when all the conditioning I had
achieved vanished into thin air. So I learned to persist, to be
careful about infection, to pace myself, and much more. I
haven’t had an ER level exacerbation in ten years now.
I succeeded without formal rehab, but keep in
mind that I came to COPD with a lot of privilege. I had more general liberal arts
education than I’d ever had any need for before I hit this challenge. I had
coped with shortness of breath all my life and was used to getting through
it.
Being disabled was not a shock to me. I even had some helpful
computer skills from the work I’d been doing. Finally: I was part of the San
Francisco Bay Area old lesbian community that had been consciously working for
decades on developing mutual support. We were used to managing our
own lives and taking care of ourselves and each other.
I mention my
privilege and resources, not because I’m unique, but neither am I typical. While
for anyone COPD is a devastating diagnosis, for many it can be
overwhelming. As patients we have to make up
our minds, gather the information and support, and to do the work of living with
COPD. If we can’t, we will just be
dying of COPD.
And there is where
you all come in. There’s a lot that you all do
that leads us to better choices. To me that’s what pulmonary
rehab means: information, support, and exercise coaching so we’ll make better
choices and reinforcement so we’ll keep up with managing our disease.
I’m here, and
happy with my life, because of these components: medications, exercise,
information, support, and reinforcement along the way. I
want to leave you with my view that providing those elements for all COPD
patients is a tremendous challenge that I’d like to see you continuing to
meet.
Again, thank you
for asking me!
Polly Taylor
Email and phone number omitted. If you wish to contact Polly, send an
email to efforts-request@efforts-list.org.