THE BLOG

High-Risk Heart

06/09/2015 09:16 am ET | Updated Jun 09, 2016
RomoloTavani via Getty Images

"You're high-risk for sudden death," the cardiologist said, letting the words tumble out of his mouth. I did my best to catch them and make sense of them. What was he trying to say? I didn't have a heart problem. Weren't heart problems mostly reserved for middle-aged, overweight men? Aside from some questionable romantic choices, my heart had always been solid. I'd had no shortage of heartbreak in my life, but none of it felt literal. I searched his face for evidence of some wriggle-room on this declaration, some thread of a joke he was in on, but there wasn't even a trace of a smile. Perhaps I wasn't going to be able to laugh my way out of this one.

I'd ended up in the hospital after experiencing ongoing chest pain coupled with arrhythmias and he was tasked with delivering the unwelcome news that I had heart disease. Heart Disease? At 41? He had to be mistaken. I took yoga and dance classes (hey, I was yoga girl!). I had (mostly) healthy eating habits. What I knew of my body was at stark odds with his diagnosis. In one fell swoop, he upturned the table on my entire concept of self.

That bombshell topped off what had been a period of intense stress. My daughter and I had just moved in with my fiancé and his four kids. The stress of blending two families, the summer holidays with everyone out of school, home renovations and a busy travel schedule had likely contributed to some of these cardiac events. I wanted to believe that it wasn't serious and if I could just make life less chaotic -- which I was frantically peddling towards -- then these episodes would disappear. That proved easier said than done. I was becoming disproportionately fatigued and unable to cope with everything on my plate. My temper flared. My fiancé and I fought frequently and I didn't feel like myself. I didn't like who I was becoming. Something felt very wrong. Still, the idea that I could have a serious heart ailment felt surreal.

It began to feel more real as numerous doctors came in to see me, trailing interns who took turns listening to my chest and talking in their rapid medical lingo that I struggled to keep up with. Something was definitely going on with my heart, and it seemed to be the subject of some debate.

The final diagnosis was Hypertrophic Cardiomyopathy. My heart wall was too stiff and vastly thicker than it should have been in someone my size. It was working too hard and this lumbering thickness made it prone to potentially dangerous arrhythmias. They told me it's often the condition responsible when young athletes suffer cardiac arrest on the track without ever having known they had a heart condition. It was a lot of information to absorb.

Heart disease kills more women every year than breast cancer, yet heart disease doesn't have as good a publicist. People don't talk about it enough -- especially not women. One of the most subversive things about heart disease is that you don't necessarily look or feel '"unwell." You might feel just a bit off, with symptoms that could be a broad number of other things -- or nothing at all. You go about your daily business, unaware of a ticking time bomb in your chest. I ignored the cues my body was sending, so they got louder. I was able to do a strenuous yoga class but would be out of breath climbing a flight of stairs to get there. If I attempted the dreaded Elliptical machine at the gym, I would experience searing chest pain and have to stop, which I wrote off to needing to do more cardio. A doctor years earlier mentioned that he thought he detected a heart murmur and that I should get it checked out, but then I lost my health insurance and later never thought to address it. It is odd that none of these events registered as "red flags" that required further investigation. In retrospect, I was checked out.

My health wasn't a priority; I took it for granted. I was the sort who rarely went for regular medical or dental visits; it was only when a particularly virulent flu or some other condition demanded it. This pattern hadn't happened overnight. How had I gotten so comfortable being disconnected from my own needs? It was a slow, insidious process, which began, as a lot of bad habits do, in childhood. There was nothing conventional about my upbringing. My parents weren't married and I didn't meet my father until I was fifteen. As a response to many shifting variables -- new schools, new countries -- I became adept at minimizing or sublimating my needs. It was more comfortable not to be seen, to fly under the radar. In a way, you could say that I'd been accumulating little heartbreaks for a very long time. It was no wonder that my heart had grown stiff and inflexible.

The cardiology team determined that I needed an internal defibrillator -- an ICD/Pacemaker device -- that in the case of a deadly arrhythmia could shock my heart into compliance. Good luck with that, I thought. My heart did what it wanted. It was impervious to logic or reason. I'd been trying to reason with it for years. Don't fall in love with this person, don't be so vulnerable, but it was as if it had a mind of its own.

The concept of having a box buried inside my chest with wires leading into my heart that might periodically zap me was terrifying.

"How cool..." said my friend Faith, trying to put a positive spin on it. "You'll have a bionic heart!"

Nothing about it seemed "cool" to me. I had a beach wedding in Hawaii to plan and wasn't interested in scheduling a surgery for an ICD implantation. I (hopefully) had years of bikinis and low-cut dresses still ahead of me; a thick, ugly scar and a mysterious large lump on my chest would be a constant reminder of my body betraying me. It was decidedly un-sexy and I hadn't given up on sexy yet. Vanities aside, there were other irritating factors. For someone who rarely took an Aspirin, I was less than enthused about the prospect of a lifetime's dependence on heart medication to lower my heart rate (which would also make me more fatigued).

After further tests reconfirmed their position, I surrendered. My fiancé accompanied me to Cedar Sinai Hospital in Los Angeles for the procedure. Feeling woefully out of place, I waited on a gurney in the surgical holding room with five men -- whose average age looked to be about eighty-five. It was a comical sight -- one petite blonde with five elderly statesmen. It reminded me of the old Sesame Street game -- Which one of these things doesn't belong here? Who would have imagined that I belonged in a Cardiac Ward?

The surgery was complicated. My body -- as if taking direction from my mind -- resisted the invasion and my blood pressure kept plummeting, causing multiple delays as they waited for me to stabilize. Choosing to have the device placed under the chest muscle would make it less visible, but it would be a harder recovery. The post-op pain was crushing. The pressure felt as if I had an elephant seated on my chest, making it difficult to take a deep breath. My breathing was so labored that first night in the ICU that I didn't sleep, convinced that if I closed my eyes, I might never wake up.

The next few weeks were challenging. I couldn't find a comfortable position to sleep in and was restricted to not lifting anything over five pounds. The chest pain was increasing and we tried multiple medications to see what I could tolerate, each with its own new set of side-effects. Gone was my jovial, pre-bionic self -- not to mention our formerly robust sex life. It felt like I was losing myself.

Adding to my depression was a slew of complex emotional side-effects that I was unprepared for. While my heart was out of immediate danger, my relationship was not. The pain and sleep deprivation did nothing for my disposition and despite the warnings about the dangers of stress, our roiling arguments intensified. My fiancé had no idea how to cope with this miserable new woman he was stuck with and I had no suggestions; I was merely trying to survive. It soon became apparent to both of us that given the constant strain, something was going to have to change. I was "decompensating," as he put it. Fear took over and I wanted to leave him before he could leave me, as I was convinced inevitably he would. Why would he want me now? This was not what he had bargained for. The healthy, vibrant woman he fell in love with was withering before him. All I saw was his frustration; I couldn't recognize the toll it was taking on him, to see me in that state and be unable to "fix" me. He agreed that I should move out. I was devastated. Despite being the architect of this dissolution, I didn't feel ready to throw in the towel on our whole relationship. It was only five weeks into my recovery but the downward spiral was already in full effect and there was nothing to prevent it. We called off the wedding. His relatives had already purchased their plane tickets. I went from planning a wedding and starting a new life to canceling my so-called happy ending. It was a disaster. My daughter and I moved out a month later.

Facing Christmas as a newly single mother (yet again), was one of the serious hits I was taking at the end of what turned out to be a very dismal year. Sometimes the heaviness of my grief couldn't be contained. My heart was in all manners, broken. It had been a swift, dizzying fall and I felt like a failure -- particularly for failing my daughter. Her life had been turned upside down, too. Aside from the sudden estrangement and a new apartment, she had a fragile mother to contend with. Carrying grocery bags could bring me to the verge of passing out. It was a scary thing for a 7-year-old to process.

Months passed. In the inescapable quiet of our new existence, my daughter and I developed new routines. We stayed busy. I worked when I could and volunteered at her school. While attempting to forge separate existences, my former fiancé and I found that after four years of togetherness, the break up was tough to bear. We turned out to be very bad at staying away from each other. We would fabricate excuses to see each other and away from all the stresses we would have such a good time that we would need to be reminded why we had split up to begin with. We were like magnets, always drawn back together. Bionic or not, the heart wants what it wants.

Two years later, after facing crazy odds, we finally did get married. We've been married for over three years now. How many couples can survive canceling a wedding, breaking up, starting over and dating again -- and then getting married? We've had to slow down a bit and take things one day at a time. While nothing is smooth sailing in life, at this point we've been through so much that we know this vessel is sea-worthy.

Here's what I've figured out: every time I try to make myself okay with something I'm really not, I'm aware that my heart is keeping tabs. It has a flawless accounting system and knows intuitively when I'm selling myself out. I'm reminded daily that everything is connected. One of my cardiologists mentioned that I had one of the strongest heart/mind connections he'd ever seen, meaning that no sooner am I upset about something, next thing I'm getting chest pains. I think of them as emotional aftershocks. I had grown used to accumulating all those old hurts and I stored them in my heart. Now I'm reminded me that that practice is a young woman's folly - one I can no longer afford. It's not about eliminating all stress and pain from my life, but managing it - or ideally letting it all go. I'm learning to say no and guarding my energy instead of letting it fritter away. My heart dictates what she will and won't tolerate and I am learning to get quiet and listen to her wisdom. When I go against what I know is right, my chest seizes up. It sends a very clear, immediate message.

We've come a long way. After a shaky beginning I have forged a healthy respect for this magical box in my chest. It intervened and shocked me once, when my heart raced to over 220 beats per minute and I blacked out. Since then I haven't doubted its worth or the insurance policy it provides. Who knows what would have happened if it hadn't stepped in? Alone in my apartment, medical assistance might not have reached me in time. Knowing that it is there to keep an eye on things and step-in, if necessary, has given me a new lease on life and a lot more gratitude.

Even the singer/songwriter Sia -- who presumably doesn't have a heart condition -- can recognize the benefits of a resilient heart. Lately, I find myself haunted by the lyrics to her song "Elastic Heart."

You did not break me
I'm still fighting for peace
I've got thick skin and an elastic heart.

I may not have the thick skin yet, but that song reminds me to let go, to take a breath and allow my heart to fully expand, without fear of breaking it. I can let powerful emotions flow through me; I don't have to hold on tight to all those little heartbreaks. It's not too late. Even rigid hearts like mine can learn to be elastic.