The Long Walk

“Improvise, adapt, and overcome.” – Heartbreak Ridge (1986)

Heart parents are understandably worried about their Cardiac Kid’s activity level. It’s a balancing act – we know that exercise and activity can help strengthen a weak heart, but how much is too much? And couldn’t something bad happen if he pushed him/herself too hard?

A 1997 research report concluded that parents worry about their children who have a Congenital Heart Defect (CHD). The study identified seven specific concerns but was unable to determine if these were specific to parents of CHD kids. The study was very limited – only eight parents participated – and drew no conclusions.

Sort of leaves you wondering. One of the major questions on my parents mind was my activity level, and what I could do physically. I think they were finally convinced by a Pediatrician who told them that he really had no idea what my limits were. “But I do know that when he gets tired, he’ll stop and rest,” he said. “I’ve seen thousands of children do that.” And…. he was right. No matter how much fun I was having, when I got tired, I’d quit and rest, and rejoin the game later. It all happened naturally, no one had to teach me how to do that.

One problem CHD kids can have is a lack of self-efficacy (in other words, we sometimes don’t believe we can accomplish a goal.) And honestly, sometimes we can’t – not in the normal, accepted way. This is where we have to convince ourselves that “there’s more than one way to skin a cat!” As a fellow Heart Warrior said in an interview published on this blog:

“…its about having the self-confidence to find another way when you reach a roadblock.”

And we all get a case ofย  “I don’t want to!” at one time or another. I know that walking is good for me, but I also know that walking in cold weather is going to cause my joints to hurt. I’ve got on thermals, coats, gloves, a scarf, and a heavy sweater; I’ve tried hand warmers and foot warmers (both thermal and electric) but it still happens – probably because of my cyanosis and/or my bloodthinners. My hands are going to ache; the joints of my fingers are going to hurt so much that they feel like dead weights until I get back inside and warm them. So in the winter months you can’t pry me out of the house and I wonder how the CHDers I know who live in cold areas survive.

This report outlines some exercise and physical activity guidelines for CHDers.ย  Even though those of us with a univentricular heart (a cool phrase for someone with one working ventricle, like my Tricuspid Atresia) have a reduced exercise tolerance, physical activity can help us, too. We just need to make sure that we don’t overdo it. And recent studies show that physical activity usually doesn’t trigger an ICD shock.

So the bottom line, Mom and Dad, is don’t become Helicopter parents and “hover” all the time. And for us CHDers, it’s probably OK to get out and exercise or play. Naturally, check with your doctor first.

And for me, to get up the enthusiasm to get out in the cold!




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3 Responses to “The Long Walk”

  1. DrJohnM Says:

    Great post.

    Indeed, I agree that not exercising is nearly always a bad treatment option.

    And, the more it is looked at, the more exercise is found beneficial, in all degrees of illness.

    Plus, to play is to have fun, to enjoy life more fully, and doing such surely is good for the heart.

  2. Barbara Says:

    What a timely article! We just spent the day at a very large amusement park. Maddy, my 8 year-old daughter with Tricuspid Atresia, just kept going and going and going. She amazes me with how much she is able to tolerate, even in the hot weather. I know her activity tolerance may change as she gets older, but for now, we never put limits on her. She walked and ran probably 5 miles today, rode every ride she was tall enough to ride (which was most of them) and didn’t stop until we got in the car.

  3. Shannon Carter Says:

    This was perfect timing for me too, Steve! Justin and I were just discussing this yesterday. Since Derrick has started walking we’ve noticed that he breathes heavily when he has been walking/running around a lot (which is pretty much anytime he’s awake). We figured he’d listen to his body (although knowing him and his determination have also worried that he may ignore his body like he does us sometimes! ๐Ÿ™‚

    Thanks for sharing! As always, it’s nice to hear from someone who’s been in D’s shoes. ๐Ÿ™‚

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