A survivor’s story: journey to diagnosis

Royce Robertson and his family

Royce Robertson is a heart disease survivor. His guest blog will share his story and advice for others in four installments.

The beginning of my journey is one of relative insignificance. Truth be told: I’m a creature of habit. Until my diagnosis, my ritual nightcap was decompressing on the couch with an IPA and the TV remote. One evening last June I was following through on routine behavior. As I stood up from the couch, I was overcome with a sensation that I had never felt before. A white, fuzzy cloud blanketed my vision for a mere couple of seconds. Warm and flushed, I used the couch to regain my balance. “I must have got up too fast,” I thought to myself. I went to bed and I never thought of it again. Until it happened again.

Two weeks later, in my office, I had been immersed in thought all morning long. Jarring me from concentration was a calendar reminder for a meeting across campus. Harried, I grabbed my notebook, keys, and phone for the mad dash. Midway through the mad dash, I paused: “here we go again.” Already standing, with nothing to lean on, I stood there with my hands out for balance until the sensation passed – just like a little kid in a wild, rolling bounce house. “There’s got to be a pattern,” I silently noted.

That night I started a process to eliminate anything from my diet that could cause lightheadedness: more water, less beer, stop multivitamin, decrease sodium, decrease sugar. I even stopped my latest binge breakfast: smoked salmon and poached eggs. All for naught. The next episode came a week later in the shower.

Despite the emerging pattern, the late summer included a 55-mile bike ride into Manhattan and my first Tough Mudder. Luckily, neither event caused any serious damage. A handful of episodes occurred in and around those events. Like many other men, I was reluctant to go to the doctor – to admit something was wrong, to add barriers to my routines. “I don’t need this right now,” I’d tell myself. “Maybe it would go away on its own.” Foolish boy: problems like this don’t just magically go away.

To compound the problem, I was experiencing lots of stress at work. A tightening in my chest misled me that my problem might be stress-related. Next new routines: meditation, deep breathing, extra sleep. Nothing was working. My symptoms were now going public. My wife, family, and co-workers would experience my sensations firsthand. I recall the fear in their faces when I would “fuzz out.” “Please go to the doctor or I will bring you myself,” my wife told me.

First appointment with my GP: confirmation but little information. He’s a country doctor, so his EKG machine resembled something of a Betamax-era device. The strip was coarse and lacked detail, but there was enough detail to determine something abnormal. Outcome: cardiology referral.

Leading up the cardiology appointment my fears kept telling me to cancel. I feared the truth. Was it tachycardia? Was it early onset of heart failure? First cardiology appointment: some clues! The EKG revealed a right bundle branch block (RBBB), a common symptom of many cardiac conditions. Clues without conclusions lead to a differential diagnosis. Outcome: more testing.

A 48-hour Holter monitor revealed 30% of my heartbeats were arrhythmic, meaning they were irregular. Normal is less than 1%. 30% – what the heck?!?! Outcome: crisis mode (and more testing). Next up: treadmill stress test, echo, bubble, etc. Long story short: nothing immediately conclusive. The evening after the testing, my cardiologist called. The conversation was longer, but this is all I remember, “You need to go to the ED right now. blah blah blah. You have what is called Arrhythmogenic Right Ventricular Dysplasia or ARVD. blah blah blah. We need to implant a defibrillator in your chest.”

This was totally not what I was expecting to hear. I mentally juggled fear, disbelief, and urgency. As my wife rushed me to the hospital, I remember thinking to myself, “how is my life about to change?” Short answer: More than imaginable. So, the only thing to do was to embrace the #newnormal.

There is much more to Royce’s story. Next up: Dealing with a Defibrillator.

Royce Robertson (@roycelrobertson) lives in between a handful of cornfields south of Syracuse, NY. He is a husband, father, and higher ed junkie.


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