By Robert Grabel
5 Mar

The Ones Who Care For Us Part 2

Thursday, March 05, 2020


Back in March 2016, after my valve replacement surgery, I wrote a post for ACHA called The Ones Who Care For Us. I discussed the importance of being grateful for our loved ones who support us as individuals with congenital heart disease. A recent experience served as a powerful reminder of how important it is to appreciate the people that mean the most to us…

A few weekends ago, 40 members of Cardiac Athletes (CA) gathered at the New Orleans Marathon for our annual meetup. CA is an international group of individuals that participate in endurance sports despite having cardiac challenges. It’s an inspiring group that has played a major role in the ability of heart patients to maintain an active and healthy lifestyle. Back in 2014, I switched from a general cardiologist to a congenital specialist and with their guidance and support, I’ve been able to participate in marathons, cycling events and even triathlons.

Several of us, including myself, did the full marathon. When I returned to the hotel after my race, I learned that one of my fellow CAs, Tim, had been taken to a local hospital after completing the half marathon. Heading back from the finish line, he wasn’t feeling well. Due to the quick thinking and heightened awareness of the CAs who were with him, Tim immediately received the care he needed.

What sticks out most in my mind is what Tim wrote the first time he had a heart-related incident several years ago. He shared that as he was laying on the cold metal cath table, he was overcome with a wave of sadness that he would never talk with his wife or his girls again. I imagine similar thoughts crossed his mind again. Thankfully, as I write this, he is back home with them. He’s recovered, and true CA that he is, he’s already back to exercise and training.

This experience got me thinking about my own wife. Reading the first draft of this post, she called me out on its authenticity. I had initially written that she was a rock star of support. After she read my first draft, she reminded me that she is not a fan of my participation in these events. She’s endured incredible scares, including mistaking me for a swimmer who was pulled out of the water during a triathlon. And watching her face as we learned about my fellow CA, it wasn’t hard to know what she was thinking. Yet, a week later she simply smiled when I told her I had signed up for my next marathon in her hometown of Pittsburgh.

My points here parallel what I said almost three years ago to the date:

Create your journey with your loved ones: We all may be CHD patients—that’s what brings us together—yet each of us is on our own unique journey. There are things we can’t choose. But we can make choices about our lifestyle. Make these choices with your loved ones, taking into account that what inspires you may terrify them! My wife and I have come to an agreement that I can do up to three marathons and three half marathons per year. She’s not thrilled with it, but it’s a reasonable compromise considering that if it was up to me, I’d be doing an event every weekend.

Thank the Ones Who Care For Us: It’s not easy being the spouse—or parent—of an adult with CHD. It takes equal doses of encouragement and understanding. Encouragement to pursue a full life and understanding that it comes with risks. While we, as the individuals with CHD, have our struggles, know that your loved ones are giving all they have to be supportive while living with their own fears. Thank them. Love them.

Live your life for yourself AND those you love: One might read the story above and say “why not just stop doing activities that put you at risk—whether it’s racing or anything else?” It’s not that simple. I have a hunch that like me, my CA friends and others know that exercise in the right amounts is healthy. And participating in races like these remind us of the joy and gratitude of being alive as well as connection and competition—even if it’s just us competing against ourselves. But we also need to recognize that place, time and moment when...

We need to live for the ones that mean the most to us.

 

Note: Always make sure to check with your ACHD cardiologist before beginning any exercise routine.

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