I ignored heart disease symptoms until it was too almost too late — here's how my community helped me advocate for my health.
It started as a whisper. Something about my body just felt off. I was experiencing overwhelming fatigue, disproportionate to my activity level; I certainly wasn’t running any marathons. It just was a busy summer. Or so I thought.
“There’s something wrong with me,” I finally said to my fiancé, Rob.
We were sitting in his parked car, and I was trying to summon the strength to open the door and get out. We had a dinner to go to with another couple, but my body didn’t want to move. He couldn’t understand why I was irritable and teary and didn’t want to do anything. It could have been bad PMS. But a tiredness seeped into every cell of my body in a way that rang inner alarm bells.
It was like wearing a cloak so heavy I could barely move. Then there were also the heart flutters, which I chalked up to too much caffeine. And, sometimes, I got a little winded going up stairs.
It’s amazing how easy it is to dismiss the signs when things happen slowly.
Then, a few weeks later, while doing laps in a pool on a hot July day, my chest seized up and I almost passed out. I could no longer deny something bad was happening.
There are often no noticeable symptoms. Young competitive athletes sometimes drop dead on the track, never having known that they were carrying around a ticking time-bomb in their chests.
I laid on a cold table in an examination room, with a bouquet of electrodes attached to my chest while the EKG reader bobbed and danced and traced the story of my heart. The cardiologist’s jovial demeanor changed. He excused himself and left the room abruptly. When he came back he was wearing a grim expression and said, “I’m afraid we are going to have to admit you to the hospital. Now.”
Wait. What? A cardiac event? What does that even mean? No, no, no. I am a young healthy woman who works out frequently and eats well. No drug or alcohol issues. No smoking. I cannot be a candidate for heart disease. That's absurd. You are mistaken.
I grabbed Rob’s hand. “I don’t really need to go, do I?”
I searched his face for hesitation, but there wasn’t any. “Yes, you do,” he said, sounding shaken. My anxiety ratcheted up another notch because Rob is a man who is never shaken.
Days of cardiac tests, scans and blood draws followed as teams of cardiologists huddled over my chart, deciphering my fate.
“Your heart is too thick and it works too hard,” they told me. “You have a serious heart condition called hypertrophic cardiomyopathy – or HCM.”
I was only 41. As far as I knew, there was no family history of heart disease. They explained, though, that HCM is a genetic disease that often goes undetected. HCM, they told me, is the leading cause of sudden cardiac death.
Unfortunately, there are often no noticeable symptoms. Young competitive athletes sometimes drop dead on the track, never having known that they were carrying around a ticking time-bomb in their chests.
I flashed for a moment on all the times over the years when I’d been doing heavy cardio and felt chest pain. At the time, I’d thought, “I really should push through this,” but I’d always backed off instead. Perhaps my intuition was guiding me. I shuddered to think how lucky I had been to be able to catch the disease before it got worse.
The medical staff explained that because of one screwy gene, the septal wall in my left ventricle was bulky and stiff and had grown to three times the normal size. It was choking on itself and I wasn’t getting adequate blood flow. This left me prone to potentially life-threatening arrhythmias and required an implanted defibrillator because I was deemed high-risk.
Nobody was saying the words I desperately wanted to hear: “You’re going to be OK.”
In fact, none of it sounded remotely OK at all. If I couldn’t get my heart to relax and expand through medication, to allow for proper flow, it would eventually fail or require open-heart surgery so that surgeons could carve away the obstruction.
All of a sudden, I was no longer planning a destination wedding in Hawaii and booking flights and caterers. I was scheduling surgery for a defibrillator to be implanted under my chest. It felt like I had been dropped into another person’s body — a very sick person’s body — that had no connection to the existence I knew before. I was now a woman with a big heart that couldn’t relax; there was a certain irony to it. My days were hijacked, spent in cardiology waiting rooms, leafing through magazines with a bunch of significantly older men. They probably thought I was someone’s caregiver.
Just like that, my identity was gone. Poof. My appearance of vibrantly good health had been a facade. All that yoga-practicing and green juice-drinking healthy lifestyle had not immunized me against the risk of dropping dead. I had done everything you’re supposed to do as a custodian of one’s own body, yet it was worth nothing. It felt like the most intimate of betrayals.
The medication they gave served to slow down my already low heart-beat and made me drowsy. The addition of an internal pacemaker/defibrillator would prevent it from sinking too low and shock me if there were any weird or life-threatening heart rhythms.
“Wow, sounds exciting!” I said sarcastically.
None of it made sense to me and it sounded like they were at cross purposes. But the doctors insisted I needed this device buried in my chest as an insurance policy against an early death. I sank into a depression. I stayed inside and watched TV. I bought into the idea that I was very ill and could die any minute. If that was true, what was the point in getting off the couch? What was the point in exercising? What was the point in anything?
The implanting of the device didn’t go well. Looking back, I might have thought to ask the electro-physician beforehand if she had operated on many people my age before. She hadn’t. She was used to an older patient with looser, more accommodating chest muscle. I developed complications. The device began to work itself back down through the entry tunnel, looking for the way out. It would eventually require another surgery to reposition it.
At my first post-op appointment, I waited on another cold steel table in another standard-issue examination room, when a man swept in carrying a plastic blue suitcase. He flipped the lid open on a table and the suitcase began loading the device’s history of my heart.
“Hi,” I said, and attempted to engage him.
He barely looked up. His head was buried in the case. The electro-physiologist joined him. They talked to each other quietly, reviewing feedback from my wireless device. Then, an intense fluttering began in my chest. I gasped.
“Whoa. Whoa. Whoa,” I shrieked. “Are you doing something to my heart? It feels like I’m about to pass out, it’s beating so fast.”
“Yes,” the doctor responded, surprised by my awareness. “We’re running tests and checking your higher rates.”
“OK, but you need to tell me what’s happening. This is scary for me.”
“Oh, sorry,” he said.
It’s not a carburetor, I wanted to say. Let’s not forget that I am a person, sitting over here. And this thing is located inside my body — it’s actually attached to me!
It was bizarre to know that an indifferent stranger with a suitcase now had complete and utter control over my heart. And we weren’t even dating! With a few flicks of the computer keys he had the power to skyrocket my heart rate if he desired. It was nuts.
There were days that I wanted to die from the pain. But I had support from dear friends and family and a network of heart-sisters that rallied behind me. More kindness flowed to me from people — even strangers — than I could ever have imagined.
While the device was supposed to “fix me” or at least make sure I didn’t die suddenly, we got off to a rocky start. It caused more problems than I’d had before the implant. Every time I picked something up off the floor or rolled over in bed, it would jack up my heart rate, sending me almost to the point of passing out. When I brought this up, the electro-physiologist offered more medications, some with serious side-effects.
Luckily, it turns out there is a community of HCM sufferers and people with pacemakers online. There are even Facebook groups. Through my own research, I discovered my device was likely on a setting used mostly for older people and not the best option for my needs. The device thought I was exercising and then would pick a heart rate to match, which was problematic when I was merely turning over during the night. I went in and asked for them to check my settings. I asked for the “on demand” setting and things improved dramatically. I also found a new doctor.
Then, as the final insult to my already broken heart, my engagement ended. Despite how much we loved each other, the stress and strain proved to be too much on the relationship.
A lot of soul searching followed during the months after that. It was the culmination of all my fears: I was defective and unlovable. But sometimes you need to truly feel the emptiness before you can begin to rebuild. So, I had no choice but to lean in to the loneliness and learn new things about myself — and my heart.
The biggest surprise was that a few months later, my relationship began knitting itself back together, but stronger. Two years after our breakup, Rob and I got married. How many couples can survive those odds? I wondered.
Last year, after I began exhibiting early signs of heart failure, I found myself on yet another cold, steel table, this time waiting to be put under for open-heart surgery. I’m not going to lie. It was a brutal recovery. There were days that I wanted to die from the pain. But I had support from dear friends and family and a network of heart-sisters that rallied behind me. More kindness flowed to me from people — even strangers — than I could ever have imagined. And I allowed myself to soak in every drop.
These days, one of my favorite things to do is sit and look at the ocean. I love to watch the surfers riding the crests, before they hop off and the wave crashes near the shore. I’ve learned to be grateful and accept that nobody knows exactly what the next wave will bring. I’m alive. I can sit in the sun and exhale and feel my heart soften and expand under the warmth of the day.
Being in nature reminds me to slow down and listen to my heart. I only have to take it one beat at a time.
Tara Ellison is a Los Angeles-based writer and author of the indie novel, Synchronized Breathing. Her work has been published in The Washington Post, the Los Angeles Times and HarpersBazaar.com, among many others. She lives in Malibu, California, with her husband and daughter. She is currently involved with Equine Therapy and working with Marine Mammal Rescue.