Post-Polio Thoughts Nancy Baldwin Carter, BA, M Ed Psych, Omaha, Nebraska, (firstname.lastname@example.org)
How did we miss these two—the pulmonary doctor and his polio survivor patient? For years we’ve been sending the message, and yet this week, more evidence that it wasn’t always received.
Here’s what happened: A good friend called. She had gotten the results of her sleep study. Underventilation, she said—great lungs, but her diaphragm is weak and can’t deliver the necessary oxygen to her lungs, she said; oxygen saturation at 77%, well below the acceptable 90-95%; also, sleep apnea—stopped breathing an average of 19 times each hour in the night. She was happy enough with this and felt relieved that her doctor had not suggested her using some form of ventilation. Instead, the doctor put her on oxygen.
That’s the problem. We’ve heard time and again that treating a patient with oxygen who has respiratory muscle weakness is like trying to inflate a balloon by blowing over its mouth instead of into it. If our muscles aren’t strong enough to get the air into our lungs, we end up with too little oxygen and too much carbon dioxide in our systems. This can turn into a deadly combination. The answer to these kinds of neuromuscular breathing difficulties is always mechanical ventilation.
Breathing difficulties came as a bit of a surprise for my friend. She was left unprepared. Post-polio educators have harped away on this subject for years, yet she didn’t hear any of this. How many others missed the message?
I suggested she do some reading, discuss the issue with her doctor. Hear it from the experts in International Ventilator Users Network’s wonderful TAKE CHARGE, NOT CHANCES, and learn how a polio survivor sees it in “My Journey Through the Basics of Post-Polio Breathing Problems,” on IVUN and PHI’s websites respectively. We should all take a look. It’s too easy for us to imagine “This could never happen to me!”
But the pulmonologist—how do we account for his lapse of knowledge? Perhaps the problem has not been discussed enough at professional meetings. Maybe the number of patients with neuromuscular problems is so small that it seems less crucial to some. Who knows.
Makes one wonder, though. What about all the doctors in various other medical disciplines who deal with those of us who have post-polio issues? Are they satisfied they’ve absorbed all they need to learn about polio’s late-effects? Is all that’s new and valuable being brought to their attention?
Goodness knows, many have tried. PHI has been at the forefront. Are you aware that once a month for the past seven years, PHI has collaborated with a leading neuroscience institute to provide educational conference calls for physicians all over the country? Doctors experienced in the late-effects work with willing medical professionals on topics vital to people like you and me. So far, so good.
Let’s keep pushing. Why not expand these efforts in the most practical way, so that more doctors will become involved in learning about treating post-polio issues? What should it be? A series of CEU Webinars? Some sort of online interactive model to educate health professionals? DVDs designed for the purpose of informing, educating, training medical personnel about issues that are uniquely tailored to polio survivors? All of the above?
This mission is alive and well at PHI. They recognize, as all of us do, too, that we can’t simply leave this work to others. Every effort that PHI has made, everything that you and I have done in the past in this direction, every little step we take—it all has an impact. Now we must keep moving on—become more visionary, more inventive, more effective.
How would this pay off for others like my friend? Maybe one day we’ll get so good at spreading the word that every polio survivor will understand that oxygen is not a substitute when mechanical ventilation is the absolute answer. And maybe by then, all doctors will be prepared to tell us that.
Nancy Baldwin Carter, B.A, M.Ed.Psych, from Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association.
Source: Post-Polio Health International (www.post-polio.org)