Jordan C's Story

Updated: May 22, 2020

I could tell you every detail about the moment that I heard I would need open-heart surgery. The street below looks a bit dreary as I look out the window of my first office, watching cars slug along in early evening traffic. With the phone pressed to my ear, I'm relieved to finally get through to my cardiologist, Dr. Kim. We've been playing phone tag all day as I hurried from one meeting to the other. She has the results of a cardiac MRI she had ordered around Christmas. Though the test itself was deeply unpleasant, I'm expecting to hear what I've always heard: one of my left valves is fused to the wall of my heart, so it never closes all the way and blood leaks back in. It's troubling, but not life-threatening. We'll wait and see if it gets worse, no need to operate yet, or maybe ever.

"I don't think we should wait to operate," Dr. Kim says gently, as if she knows that the words she's speaking are about to destroy me. She probably does. Her experience and bedside manner are two of the reasons I've stayed with her after I moved from Philadelphia, the third being that she's just really cool. But this will not be a chit chat between girls, this is life-altering news. From that moment to this one right now, not a day goes by where I don't think about it. I suppose I have the sort of personality that lends itself to hyper-fixation, and hey, heart disease is as good of obsession as any. It's funny, I used to say "oh I have a heart thing." I found that the phrase was just dramatic enough to get people to leave me alone and not push, but vague enough to not incur additional questions. It was embarrassing that my heart would race at seemingly "easy" physical tasks like climbing the steps to my sister's 5th-floor walkup (which she still lives in and still causes me grief.) I didn't want to think about it. That all seems so far away now.

A year later, I wake up after surgery in a strange hospital bed in the ICU, with all manner of wires and tubes attached to me. Despite my demands that no one needs to stay over with me because I am not a baby, my mom has fully ignored me and I am so glad to see her. When they take out my breathing tubes, I lay on my side and talk to her non-stop. Apparently, my brain feels the need to make up the hours of my surgery and the hours and hours of sleep in which I was not able to talk. The nurses are reasonably confused by this turn of events, but my mom entertains it happily. I don't know what we possibly talked about or for how long, just that it seemed to comfort us both. The quick return of my Energizer Bunny personality seemed to prove to us both that I was alive, and this was over.

"Over" is probably a tad of an overstatement. The hard work was just beginning, and it's never been lost on me that for those 6-hours of surgery, I had the easiest job of us all. I dreamed blissfully in an anesthesia-induced sleep while my parents, my sister, and my boyfriend waited and worried and waited some more. Not to be outdone, now that I was awake I had the hardest job: sitting in a chair. "Do you want to sit in the chair?" the nurse asked me after my first walk around the step-down unit when I was discharged from ICU a few hours later. "No," I said, "I want to go back to bed." "Hmm," she considered this proposal, "no, we're going to sit in the chair for a little while." I really didn't want to sit in the chair. I was already exhausted. I also really didn't want to do the breathing exercises that prevent a collapsed lung. Such a simple task seriously hurt. And I really didn't want to wear my oxygen tubes, because, for some reason, they were the annoyance I found most unbearable. Post-op is truly a case of that old saying, the only way out is through. So you sit in the chair, and you do the breathing exercises, and you keep in the oxygen tubes, no matter how much they itch. The days go by in a fog of walks, naps, and mango smoothies from the hospital food court which my dad delivers like clockwork. The chest tubes come out, they were the hardest part, and eventually so do the oxygen tubes, they were the second hardest. We replace pain meds with Tylenol, we do x-rays and echos and blood work until they all say I can go.

When the tests say we can leave Boston too, we drive six hours back to New Jersey. My childhood bedroom is the same as when I left it three weeks earlier, that is, a complete and total mess. I am not. Now we wait. I may have plowed through the ICU and rushed my way out of the hospital, but there's no speed-running this part of recovery. To get to my heart, they went through the sternum. The sternum is a bone, a really important bone, but a bone all the same. It takes 8 weeks to heal, no matter how hard you train. That doesn't stop me from trying. At first, I try some yoga, but give it up when after my first savasana, I realize to my horror that I'm not able to lift myself up off my back. I'm stuck, like an upside down turtle, and have to figure out another way to get back on my feet. I walk every day around the development nearby and pass the playground of my elementary school. There's a little slope and a collection of trees. When I realize it's the same place that we used to play make-believe, I'm amazed that something so small could've ever felt so big. Time passes, slow some days and fast others. The only real guarantee in life is the passage of time, everything else is a consequence of that.

Two months nearly on the dot I go back to work, albeit with a very generous work-from-home schedule. I start planning to move out of my childhood bedroom which is still a complete and total mess. Pain lessens over time and my scar starts to fade. You can hardly see it now, a fact that actually makes me quite sad. It's like a diploma for my experience, proof of execution. Jordan Chaffiotte, Certified Heart Survivor. People tell me all the time that they think I'm brave or tough, but the truth is, you don't know your strength until it's tested. Maybe that's why I find myself so often thinking about those days in the hospital, what it felt like, what it meant.

That I am a heart survivor is so intertwined with my identity now because it reminds me of what I am capable of when put to the ultimate test. It's the version of me who fought, won, and lived. It's the girl who lifted herself up out of the hospital bed even if it took a few tries. The girl who always opted for one more walk even if it was followed by one more nap. The girl who wanted to go back to work a month later even if she was told no by people who knew better than she did. Most of all, it's the girl who cherishes little victories over perfection. Who would've thought that the best version of myself would also be unable to go to the bathroom by myself? Not to worry, that part's past.

I'm well now. I can go to spin and pilates class with my sister. I can hike the Cinque Terre or at least I can try. And yes, I can go to the bathroom without someone making sure I don't pass out on the way. I want more, I will always want more. It's the same raw determination that got me through the surgery, so how can I reject it? Whoever I am in my life, whatever I win, whatever I lose, whenever I succeed and most especially whenever I fail, I am a survivor. Nothing will ever change that.

#CongenitalHeartDefect #Survivor #Determination

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