The Day My Heart Broke (part 2)

I woke from sedation still in the same trauma room in the emergency department. Aaron sat in a chair not far from my gurney, looking tired—and maybe a little sad. He was still holding my coat, shirt, and shoes.

As I came to, I apparently laughed and said something about dreaming of Halloween. I never believed those stories about people acting completely off their rocker while coming out of sedation. I guess I do now.

The doctors released me that day, but not before issuing firm warnings: don’t do anything exciting, don’t drink caffeine, and find an electrophysiologist as soon as possible. And not before I overheard a nurse remark that she hadn’t seen someone with a ventricular tachycardia heart rate that high who was still conscious, alert, and talking—and wondering aloud whether I should really be going home.

We left and tried not to think about what lay ahead. That proved impossible. We googled. We searched the internet and social media. We found a lot of information. I remember reading countless stories—many on Instagram—about people going into VT for various reasons, including arrhythmogenic cardiomyopathy (ARVC or ACM), along with other cardiomyopathies. I initially dismissed ARVC because everything I read described it as genetic, and I couldn’t think of anyone in my family who had died from an unexplained heart condition.

Still, something gnawed at the back of my mind.

Through a friend and client of Aaron’s, we found ourselves back in the office of Dr. Crandall, who had treated me for tachycardia years earlier. He ordered an echocardiogram, which he told us looked completely normal. Even so, he recommended another endocardial ablation and electrophysiological mapping to determine where the abnormal rhythm was originating. His office scheduled the procedure for two weeks later.

The day before the procedure, I logged into my chart to check the results of my required COVID test and noticed the echocardiogram report was available. I didn’t waste any time reading it. Much of it was incomprehensible to me—measurements, numbers, terminology I didn’t understand—so I skipped ahead to the section labeled Impressions. That’s where I read the words: moderately to severely enlarged right ventricle.

Well, that can’t be good, I thought.

That night, I showed the report to Aaron. Neither of us could understand why we had been told my heart looked completely normal if the report clearly stated my right ventricle was enlarged. Later, I would be told it was likely because I was an athlete—apparently endurance athletes often have enlarged right ventricles. (For the record, I am not an athlete.) The next morning, before I was wheeled into the cath lab, we asked the doctor about the enlarged right ventricle.

“Hmmm. I’ll take a look at that,” was his reply.

The cath lab is a cold, mechanical room—one I can only describe as masculine in nature. Large X-ray machines loom overhead. Monitors and screens line the walls. There’s a glass viewing wall and a narrow table for the patient to lie on. As I was prepped for the procedure—which included a very…intimate shave—I felt deeply alone and scared. I realized I was the only woman in the room. The lab that day was staffed entirely by men.

With the exception of one technician who spoke kindly to me, the staff talked about me as if I couldn’t hear them. They speculated about my possible diagnosis and downplayed my symptoms. I remember thinking that this flippant dismissal was exactly why I was there in the first place. If the doctors I’d seen over the years had listened when I described my racing heart—rather than telling me I was fine, not to worry, or to “just take more magnesium”—maybe I could have avoided this entirely.

I’ll spare you most of the details of an endocardial ablation. Suffice it to say, they puncture veins or arteries in your groin and thread wires up through your body—past your pelvis, through your torso, and into your heart. It’s wild, really.

After the procedure, I woke in outpatient recovery, lying flat on my back with an extremely full bladder. They flood you with fluids to help regulate your body temperature while they burn tissue inside your heart. It was incredibly uncomfortable. My nurse, though, was wonderful. She helped both Aaron and me feel calm and showed genuine care for us.

While I was under sedation, Dr. Crandall explained to Aaron that although the procedure itself was successful, they had observed some concerning findings. Based on my heart rate, the origin of the abnormal rhythm, and the condition of my right ventricle, he suspected I might have ARVC. He recommended a cardiac MRI within the week.

Three days later, I endured the torture that is a cardiac MRI. The technician told me it was the longest MRI they perform. She wasn’t kidding. I lay on my back in the tube, holding my breath on command, for nearly an hour. When it was over, she looked at me with sympathetic eyes and asked what the doctor was looking for. I explained that he suspected a form of cardiomyopathy. She nodded and mentioned that the walls of my heart were “quite motiony”—whatever that meant.

I’ve had MRIs before. I’ve had family members wait weeks for results. I fully expected a long delay. I was not prepared for the phone call the very next day.

“The results of your MRI are in,” the doctor said. “It does appear that you have arrhythmogenic right ventricular cardiomyopathy. I’m referring you to a physician in the heart failure clinic—his office will call to schedule. It’s genetic, so you’ll need genetic counseling, and all of your children will need to be tested.”

With that, the world as I knew it—the life I had built and the future I had imagined—vanished.

The Day My Heart Broke

I can’t believe I’m here, in front of my trusty Mac, again—writing a blog post, something I haven’t done in a decade. I’m rusty. My fingers feel tethered by cobwebs. But I feel like this story needs to be shared.

October 23, 2021, was supposed to be a busy day for our family. We were visiting Cache Valley for the weekend with plans to clean our property (we own a home in northern Cache County that we planned on renting to a young couple of newlyweds attending Utah State University), do some shopping, and attend a Halloween party that evening.

It was a cold, rainy morning, so Aaron and I decided to work out indoors instead of running the hills of High Creek Canyon. Aaron took the treadmill, and I picked up my jump rope to get in a quick cardio session.

I love jumping rope. I’m not particularly good at it, but when you get into a rhythm with the rope—oh man—it feels good. I turned on some upbeat music and began skipping. I have to have music when I jump rope; it’s a must. But that morning, Aaron wanted to watch something—a documentary about WWII, I think. I couldn’t hear my music, and in frustration, I grabbed my rope and phone and headed to the front porch.

Our Cache Valley home has the most enviable front porch. It’s six feet deep and wraps around the front of the old farmhouse, with views down the canyon and out into the valley. I love sitting on the porch watching the cows in the pasture just below the house. Not too long ago, I discovered the joy of working out there. It’s relatively private and offers fresh air and a view to distract from any boredom or monotony.

That day, however, was cold—something I don’t think my body appreciated much. I was working up a sweat (I am a very proficient sweater, if I do say so myself), and the cold air felt biting. Still, my rhythm was good, the music on my playlist was spot on, so I pushed on.

About 20 minutes into my workout, I noticed my heart rate jump. I was used to that. Twenty-five years earlier, I had been diagnosed with supraventricular tachycardia (SVT), an arrhythmia that causes an unusually fast heart rate in the upper chambers of the heart. I’d had surgery to correct it—a cardiac ablation—but it was unsuccessful. At the time, my doctor told me not to worry too much, as it was considered a fairly benign arrhythmia.

I stopped jumping rope to see if my heart rate would come down, but instead I became extremely dizzy. I gathered up my rope and phone and retreated into the house. The workout was over.

Inside, I lay on the floor stretching, cooling down, and trying to bring my heart rate under control. I was wearing an Apple Watch, which read a heart rate of 89—not high at all. I was confused, because I could feel my heart beating out of my chest. After about ten minutes, Aaron finished his run, and my heart was still raging. I knew I needed to tell him, though I really didn’t want to. This had happened before, and it had always resolved on its own. There was no need to alarm anyone.

To my dismay and tremendous disappointment, nothing changed. My heart thundered on, and I began to feel nauseous and increasingly dizzy. My son, Brighton, brought me a sports drink, and Aaron brought me a banana, thinking I might be dehydrated or have low blood sugar.

I attempted to shower, clinging to the walls and countertop as I made my way into the bathroom. Stars filled my vision, and my breath felt shallow and weak. In the shower, I raised my arms to wash my hair, only to collapse onto the floor as my vision went dark.

Up to that point, I had felt relatively calm. As I said, this had happened before, and I’d been fine. But now it felt different. Sitting collapsed on the shower floor, the thought crossed my mind: This is how I die.

Aaron came into the bathroom and found me collapsed on the shower floor. He instantly dropped to his knees beside me. Panicked but focused, knowing exactly what he needed to do, Aaron quickly gave me a priesthood blessing before helping me out of the shower. Back in the bedroom, he tenderly helped me dress as I lay on the floor, growing more nauseous with each passing minute.

Despite passing out and feeling so ill, I begged not to go to the hospital. Brighton, in his 22-year-old wisdom, offered to call an ambulance, reminding me that heart issues should be taken seriously—and that the “heartburn” I complained of was actually chest pain.

I’m ashamed now to admit that it took two hours for Aaron and Brighton to convince me to go to the emergency room. When I finally acquiesced, Aaron carried me to the car for the 25-minute drive to Logan Regional Hospital. I tried several times to convince him to turn around, insisting that I felt better. Luckily, Aaron is a smart and deeply concerned man.

He placed me in a wheelchair and guided me into the emergency department lobby. All the while, my watch still read my heart rate as 89 bpm. I could not understand what was happening. My heart was just thundering—that’s the only word that fits.

Within about 30 seconds, a nurse called me back to triage. I removed my top, put on a hospital gown, and crawled onto the bed as she quickly placed several leads on my chest to monitor my heart. I never saw the monitor, but within seconds the small room filled with two doctors, a physician assistant, and additional medical staff, who swiftly wheeled my bed into another room across the emergency department.

One of the doctors looked at me and said, “This isn’t SVT. This is ventricular tachycardia. Your heart is working much harder than we’d like. We’re going to need to perform a cardioversion.”

I understood every word he said. The gravity of the situation was not lost on me. Ventricular tachycardia, or VT, is a very dangerous arrhythmia that can quickly lead to cardiac arrest if not corrected through medication or cardioversion. He explained that they would normally try medication first, but with my heart rate—between 230 and 240 beats per minute—cardioversion was the safer option.

Through tears, I gave my consent.

IVs were placed in both arms. Electrodes were attached across my torso and legs. Oxygen was placed over my face. And before I knew it, I was drifting off as they prepared me for a sedated cardioversion.

To be continued…