The joke in my family is that I never met a bureau I did not want to move. Although none of us have an athletic bone in our bodies, of my five sisters I am by far the most physically active. I am lucky enough to have had a pediatric cardiologist who, even back in the 1960s, believed in self-regulation. Told to do whatever I wanted “until my body said stop,” I took this instruction quite literally. When playing tag, my signal to stop was my heart pounding so loud I could not hear, combined with the distinct urge to both faint and vomit.
When the 70s running craze hit, I took off, determined to cover three miles. My routine was always the same: I would run until I felt like I was going to pass out, put my head between my legs, and then walk quickly until I could start over. It never occurred to me that this routine was anything out of the ordinary. When aerobics got hot, there I was, shaking and moving, the whirling of the disco beat matched by the whirling in my head (click here for the video inspiration for the title of this blog). My only frustration was when I took my pulse, and found that despite all the sweat, my heart rate never went above 90.
Fast forward to my late thirties, when the bottom fell out of my heart health and words like, “heart failure” and “transplant” suddenly replaced “nothing to worry about” in the cardiac exam room. My cardiologist was explaining that I have chronotropic insufficiency – because of my weird anatomy, my heart goes too darn slow.
Vague memories of childhood cardiology visits spent doing push-ups come back as he tells me that my heart rate had never been able to speed up with exercise. I call my mother, furious that this wasn’t made clear to me, even long after I became an adult. “Oh, I knew that,” she says. I pause. “So at what point were you going to tell me – my 60th birthday party?” Once my pacemaker went in, the familiar exercise-related nausea and dizziness disappeared. What I thought was “normal” exercise side effects were the result of my overloaded heart.
Do I wish I had been told sooner? I know the right answer is yes – as the President and CEO of ACHA, I run an organization with a fierce commitment to patient empowerment. In withholding information this way, my medical team continued to treat me like the child I used to be rather than the adult I was. Yet, there is a part of me that is glad that I did not know, at least throughout my childhood and teen years. If someone had told me early on that I had “abnormal exercise response,” and that I “couldn’t” run due to my heart rate, I never would have tried.
One thing that surprises my doctors is that, if you stick me on a treadmill, I am one of few complex CHD patients whose exercise results come up within normal limits. Almost all congenital heart patients, even patients who have early repair of simple defects, show a decrease in exercise ability. We don’t know why this is, but a top theory is that it is in part a consequence of the conscious and unconscious exercise limitations enforced by parents and the patients themselves. My stamina today may be a direct legacy of a childhood spent pushing to my limit.
I can’t tell you the number of ACHA members whose response to my exercise regime is, “aren’t you afraid of what will happen?” But if pushing myself was going to make me croak, it would have happened years ago, in the school yard or under the disco ball. And my ACHD doc assures me that those “drop dead” stories I see in the paper are not “my kind” of CHD patient, and that pushing my weak heart will likely strengthen it and may even make it last longer.
I am glad for the gift my pediatric cardiologist gave me when she told me to go exercise, and did not share what the EKG said about what I could and could not do. And I am glad I had a family that was able to step back and let me set my own limits, despite their justified concerns. As long as I am able I will keep pushing my heart, with all its technologic bells and whistles, to do all that it can. But I still chuckle when I think of me at 21, clad in spandex and clutching my pulse, trying to figure out how to get my heart rate above 90.
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