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Aug 5

Posted by: ACHA
8/5/2011 11:09 AM  RssIcon

By Amy Verstappen
ACHA President/CEO

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.

Amy Verstappen is the President/CEO of ACHA. For more about Amy, click here.

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4 comment(s) so far...


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Re: Push It

Amy, You are an inspiration!! I am so envious that I didn't have your pediatric cardiologist. Mine was of the mind to treat me like a delicate flower and prop me up in the corner. My family (all of them athletes and dancers), went right along with it. Now that I'm in my 40s, I'm finally in your camp, pushing myself as hard as I can go. I've walked 2 marathons and 4 half marathons, because I "can't run." But this year is the new challenge... learning to sprint and jump hurdles. I'm having a blast!

By Tina Rinaldi on   8/5/2011 12:00 PM
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Re: Push It

Wow Amy that's a great story. Mine was quite the opposite. My doctors and my mother told me to be "careful". I was always afraid to over do it. It was only later, in my late 20's and 30's that I began to push myself to exercise on a regular basis. I too, have chronotropic insuffiecency. My hr never goes above 135 and thats pushing to the max...unless I have V tach which then goes to 180-190!
But now, I continue to exercise as much as I feel I can..I walk about 15 miles weekly and go to the gym 3-4 times a week...and now being in my 50's, I'm pretty satisfied with that.

By David Downie on   8/5/2011 12:16 PM
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Re: Push It

Sounds like the result when I decided I was going to climb a 40ft indoor rock wall. I made it to the top, which was more than a lot of the others in our group could say, but then spent the next hour or so recovering. Apparently, 3 chambered hearts w/ TGA and rock walls don't mix. lol I'm pretty sure I freaked out more than a couple of people with that one. I'm glad I did it, but once is enough

By Wuggazer on   8/5/2011 1:37 PM
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Re: Push It

Amy,
Great blog. I to can remember having a cardiologist and mom that told me "you know your limits". So, growing up I did the things I enjoye, softbal, swim team, and just playing and keeping up with friends. Now chasing my one year old twins. I few years ago I was working with a personal trainer. And even being an adult and knowing that the beta blocker keeps my heart rate down, I would get frustrated that I was not in the "target" zone for heart rate. My personal trainer just told me to use perceived zoning. Meaning am I sweating, is my breathing different. Those things help me know I am on target for me. My doc now is very helpful with making sure I am getting some exercise and advising me if I have questions. I am just thankful for my mom and pedi docs letting me learn to read my own body.

By Laura Addicks on   8/5/2011 1:51 PM

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