The Day My Heart Broke Part II

 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 onto  my coat, shirt, shoes...

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

The doctors released me that day, but not before a firm warning not to do anything exciting, not to drink any caffeine, and to find an electrophysiologist as soon as possible. And not before I overheard a nurse commenting on how she hadn't seen someone with a v-tach heart rate so high and still conscious and talking and questioned if I should really be going home.

We left that day and tried not to think about what lay ahead. It was impossible not to google and search the internet and social media for information--which we found a lot of. I remember reading so many stories on Instagram about people going into VT for various reasons including Arrhythmogenic Cardiomyopathy (ARVC or ACM) as well as other cardiomyopathies. I wrote it off though because everything I read about ARVC said it was genetic and I couldn't think of anyone in my family who had died of an unexplained heart condition.

Still something stuck in the back of my head, gnawing.

Through a friend and client of Aaron's, we found ourselves back at the office of Dr. Crandall who had treated me for tachycardia before. He ordered an echocardiogram, which he told us looked completely normal. Still he told us I should have another endocardial ablation and electrophysical mapping of my heart to find out where this rhythm was coming from. His office scheduled the procedure two weeks later.

The day before the procedure, I was looking in my chart for the results of my required Covid test when I realized the report from my echocardiogram was available for me to read. I wasted no time digging into the details of the exam. I didn't understand a lot of what was there--measurements, numbers, I didn't know enough to decipher it all. I skipped to the part of the report labeled "impressions". It was there that 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 one of us could understand why we were told my heart looked completely normal if the report said the right ventricle was enlarged. Of course, I was told later, it was because I was an athlete (I am not an athlete, by the way) and many endurance athletes have enlarged right ventricles. The next morning, before being 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 that I can only describe as being masculine in nature. There's large X-ray equipment, monitors and screens everywhere, a glass wall for viewing, and narrow table for that patient to recline on. As I was being prepped for the procedure (which included a very...intimate shave) I remember feeling very alone, scared, and I recognized I was the only woman in the room--the lab was staffed that day entirely by men. With the exception of one technician who spoke kindly to me, they were all talking about me as if I couldn't hear. They were remarking about my possible diagnosis and downplaying my symptoms. I remember thinking this flippant treatment of my symptoms was the reason I was there in the first place, that if the doctors I had visited in all the years leading up to this had listened to what I said about my racing heart instead of telling me I was fine, not to worry, and to "just take more magnesium," I could have avoided this mess.

I'll spare you the details of endocardial ablation, just to say that they punch holes in your femoral veins or arteries and fish wires up through your groin, into the pelvis, through the torso, and into the heart. It's crazy, really.

Following the procedure, I woke up back in the outpatient surgery, flat on my back with an extremely full bladder. They fill you with water to keep your body cool as they go about burning the inside of your heart. It was very uncomfortable. My nurse, however, was fantastic. She helped Aaron and I feel calm, and showed much concern for both of us. While I was out, Dr. Crandall explained to Aaron that while the procedure was successful, they did see some concerning things. Both the heart rate and rhythm, where the rhythm was originating, and the condition of my right ventricle led him to believe I might have ARVC. He advised I have a cardiac MRI within the week.

Three days later, I endured the torture that is the cardiac MRI. The tech explained to me that it is the longest MRI they do. Really, it was torture. I lay in the tube, on my back, holding my breath on command for nearly an hour! At the end of it, the tech looked at me with sympathetic eyes and asked what the doctor was looking for. I explained he was looking for a form of cardiomyopathy. She nodded her head and explained the walls of my heart were "quite motiony," whatever that means.

I've had a few MRIs in my time. I've had family members have MRIs. I knew full well how long it takes to get results back from such a test. Sometimes we've waited more than two weeks. I wasn't planning on hearing anything for quite a while. To my surprise, the doctor called the next day.

"The results of you MRI are in and it does look like you have Arrhythmogenic Right Ventricular Cardiomyopathy. I'm referring you to a doctor in the heart failure clinic--his office will call to schedule an appointment. It's genetic, so you'll need genetic counseling and all of your kids 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.

If you're new here, start with this post and follow along in chronological order.