A survivor’s story: my cardiac identity crisis

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. Read part one here, part two here, and part three here.


Have you ever worked so hard to prepare for a major event, battle, or conflict, only to have it all change in a matter of minutes? Did you ever believe something to be true only to have it be untrue? Have you ever struggled with your own identity after finding out the new truth?

I have. I do. I am.

In December 2016, after a fast and furious series of tests, I was diagnosed with Arrhythmogenic Right Ventricular Dysplasia (ARVD). And with it – a shiny, new implanted cardioverter defibrillator (ICD) as well as a routine of beta blockers to keep my heart as happy as possible. I exhibited many of the symptoms of ARVD. I had a family history of tachycardia to support the diagnosis. It appeared to be the proper diagnosis. Fast forward into 2017 – hospital visits, shocks, anxiety. Despite it all I felt resolute that I was priming myself to be a spokesperson for battling ARVD. I began telling my story, started building a network of supporters, raised money for a Heart Walk, and learned more about the rare condition. The next – hopefully final – step in my recovery was an epicardial ablation scheduled for April.

That Monday in April could not come fast enough. On the morning of the ablation, I arrived at hospital: nervous, optimistic, scared, ready. Checked in. Changed into gown. Removed jewelry. I signed the usual litany of forms, precautions, and disclaimers. The surgeon reminded me that once I was under that they would be performing other important scans prior to the ablation as a final means of identifying landmarks necessary for any last-minute decisions. Around 8 AM, after being rolled into the operating room, I remember some Jimmy Buffett mood music, the gas mask over my face, and then all black. The next thing I realized I was in the recovery suite – groggy, disoriented, confused. I looked at the clock: 9:30? They told me that the procedure would last 4 hours. Why am I done after 90 minutes? I clumsily moved my hands around my body to check for any evidence that the work had been done. No tender spots. No pain. No gauze or padding on my chest or groin. No signs that anything had been poked into my body whatsoever.

After a few minutes of confusion, I mumbled to the attending nurse, “how come I don’t have any bandages?” She told me that the doctor aborted the ablation because he “found something”, but she could not tell me what that “something” was. Despite my groggy state I started to panic. Inoperable? Cancer?

Coming out of the fog, my wife and brother-in-law joined me in the post(?)-op suite. The doctor arrived a few minutes later. While performing the preliminary scan the team found a blood clot fixed to the wall of my right ventricle, and a serious inflammation in the tissue around my heart. These were not visual indicators of ARVD that were anticipated; rather, an equally rare yet difficult to differentiate condition called Cardiac Sarcoidosis. I was not sure what to think at that exact moment. It was a blur. I was transferred to my room and appraised of my new schedule including a series of tests to determine the extent of the sarcoidosis.

This ARVD-sarcoidosis confusion was new to me but not to the medical community. ARVD and sarcoidosis have little to do with each other except that they are commonly confused in diagnosis. One is genetic, the other is auto-immune. Either way they have some of the same symptoms: lightheadedness, arrhythmia, and a low ejection fraction (EF) – the volume of blood leaving the ventricle upon contraction. There are other common symptoms, but those are my most notable. During my alone time in the early morning and evening hours, I read peer-reviewed articles on the difference between the two, prepping myself for the days ahead.

Somewhere around Wednesday night, I had a moment of confusion. I had realized that for the last five months I had been encouraging myself through self-talk – I was the “genetic heart defect guy” not the “rare auto-immune disease guy.” I was feeling a slight bit of identity loss. Even though I was still technically sick, I could rationalize this re-diagnosis as a good thing. Foremost, my daughter did not have to endure genetic testing. For me, I am still alive. Also, sarcoidosis is treatable and can be managed. In case of emergency, Sparky is still there for me if I need him. And, frankly, I am alive because had the doctors not taken the extra time and attention to confirm what they saw on the scans, they would have ablated the granulomas and the clot. Not good. I’d likely be playing the Back 9 at the Cloud City Country Club.

After making this mental pro-con list, I determined that there is only one conclusion: I am blessed. In the 90 minutes that I was unconscious I went from the “genetic heart defect guy” to the “rare auto-immune disease guy” and I am still alive to talk about it. That kind of redirection of fortune does not happen to everyone. So, it is why I walk. That 90 minutes is my game-changer. If not for the expertise of the doctors, their knowledge of existing research, I might not be here. To repay the favor, one small thing I can do for a big impact is to walk. Walk for my own health. Walk for those battling all heart conditions – temporary or permanent, auto-immune or genetic, circulatory or conductive. Please consider joining me and many others as we walk for our hearts and the hearts of others at the Syracuse Heart Walk on April 21, 2018 at SRC Arena at OCC.

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