My cardiologist, Dr. Heather Ross, spent almost an entire hour with me that day. She had to deliver the difficult news about my diagnosis. She was remarkable. She used the most honest, supportive approach to give me the hard scientific truths. I learned that from the first round of tests to the second there had been a substantial decline in my heart function – my ejection fraction had dropped to 37. Then she explained my treatment plan – I was to start on a Beta Blocker that evening. We went over the protocol of how we were going to titrate the drug up to the target dose (it would take the initial introduction followed by seven incremental increases to reach the target dose of the first drug) and how she would add an ACE Inhibitor and diuretic. We reviewed both the roles and side effects of the medications. She advised me to prepare myself for a defibrillator implant and explained my exercise limitations. I learned that day, right from the start of this journey, that there were no guarantees as to how long I was going to be able to live with this condition. In short, she told me that my life was changing; my day-to-day and my future would look very different from the hours before I’d gone into my appointment. 

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The first call I made was to my parents. My mother, a retired nurse who had spent several years working in cardiology, cried so hard she couldn’t speak. She understood far too well what it all meant. We had lived through my dad’s diagnosis and his cardiac arrest in an elevator at work. Three extraordinarily brave co-workers performed CPR on him until the paramedics arrived and assisted in saving his life. Although we believed the cases in the family to be genetic, all genetic testing to-date had come back negative. Historically, the family members that had been diagnosed had been decades older than I was. None of us ever thought it would happen at this point in my life, if in my life at all. My siblings then went in for screening and thankfully, for the present time, all results came back noting normal cardiac function.

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The first few weeks after my diagnosis were extremely difficult. I agonized over what had triggered it. I had graduated from The Royal Winnipeg Ballet School and danced professionally, was a certified holistic nutritionist and had valued fitness and health all of my life. I painfully struggled with the fact that no matter what I did, no matter how hard I worked, this was never going away. I was never going to be able to conquer it and, at best, I would be able to fight the progression for a very, very long time. It felt like the ultimate defeat. The reconciliation of the “old” me with the “new” me proved to be very challenging. I grieved the loss of the old me, the healthy, independent, incredibly active me. I wondered how the new me was going to raise my children while I adjusted to treatment, what would happen to them if I declined, and the torturous thoughts just felt endless. I slept very little and would walk to Starbucks for its 5:30am opening every morning, allowing myself to cry quietly as I walked down the street, shielding my children from witnessing my sadness. I waited five days before I started researching the most recent prognosis stats. Dr. Ross had graciously offered to set up an appointment with a psychologist whose specialty was working with heart failure patients. I accepted. 

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And so there it was. This diagnosis. This problem. This disease. I didn’t want it, I hadn’t asked for it, but it was there…and it was terrifying. 

 

I had to prepare myself mentally for the surgery to have the defibrillator implanted. As shallow as it may seem, initially I was upset about the scar it would leave. I had spent years developing a lovely neckline in ballet school and it was going to be cut up, leaving me with a daily visual reminder that something was wrong with me. I just could not see things clearly, or positively.