This month marks four years since my open heart surgery. If you would’ve asked me back then what life would be like post-op, I would’ve told you that I looked forward to not having to worry so much about my heart. I would’ve said that it would be great to have that behind me.
Instead, I’ve probably worried about my heart more in the past 48 months than I did for 396 months leading up to my surgery. I talk about my heart more, am more aware of how I feel, and less certain of what I’m capable of.
I don’t count that as a negative, oddly enough. I attribute it to the appreciation I’ve gained for this second chance at life. I see my surgery—and the struggles and triumphs over the past four years—as opportunities to educate and enlighten others. The first 33 years of my life were normal—to me. Now that my heart function is more in line with what others would consider “normal,” I’m just working out what that means to me.
I feel compelled to stay in the paradigm of someone just fully recovered from open heart surgery, with such a shadowy outlook freshly in the rear view mirror. I remember feeling like anything was possible out there ahead of me… I just had to go for it. My entire family had just been through hell and survived! It was a strangely intimidating time, but invigorating as well.
There are aspects to this new life that I expected to be easier than they have been, but the view in your mind is typically from the summit—not at the foot of the mountain. Despite limitations caused by medications and pacemaker issues, I feel like I’ve maintained focus on enjoying the fresh start and living life more healthily than most.
Possibly the most significant change (other than the physical) has been in my inability to stop talking about it. Without even intending to, I find myself working my CHD and surgery into most conversations that last longer than five minutes. Whether I’m at work, hanging out with family or friends, on an airplane, or at the store, I’ve found myself talking to someone about my experience… in many cases, showing them the photo of my heart that I keep on my phone.
My goal for 2016 is to keep this mindset and work towards heart health and CHD advocacy with vigor. While that doesn’t mean I can fly to D.C. with ACHA to participate in those advocacy efforts, I can still be involved in ACHA and related heart organizations on a local level. I encourage you to do the same in your area.
We’re not always advocating to politicians for added research funds—sometimes we’re making other CHD families more aware of what resources are available to them and how their experience might be similar to others. Sometimes it is easy to see ourselves as an example of our CHD diagnoses, as opposed to an example of what a person with CHD can accomplish despite it. We all fight a different fight, some tougher than others. Tell everyone about it!
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