This heart of mine…
I was 41 years old when I was diagnosed with dilated cardiomyopathy. That appointment will forever be burned in my memory – it was the moment everything changed. I went to the hospital that day an exhausted mother of three and I left a heart failure patient. The period that followed was one of substantial personal growth and looking back now, perhaps, even one of divine intervention.
I had initially gone to the Peter Munk Cardiac Centre for pre-emptive screening as there is a familial history of dilated cardiomyopathy (I being the first in my generation to be diagnosed). I was unbelievably exhausted during that period, but, at the time, had chalked it up to caring for my three children (ages 4, 3, and 1).
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.
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.
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.
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.
However, time went on, as time does. One evening, a couple of months after I was diagnosed, I was lying on the floor in the quiet darkness next to my youngest child’s crib, holding her hand until she fell asleep. I could hear the soft, rhythmic sound of my heart beating. I envisioned it dilating in an effort to work harder, to supply my body with what it needed. This heart that had pushed through ballet school, experienced love, loss, and worked through the pregnancies and deliveries of my three children, was sick…and then something happened. My emotions started recalibrating. I started feeling fiercely overprotective of my heart and the life I had worked hard to build, and I decided it was time to pick myself up, dust myself off and rebuild. I made a very important decision. I wasn’t going to allow this disease to define me, discourage me and defeat me. Instead, I chose to redefine my life and turn it into something meaningful, something courageous and something beautiful. I was going to do everything I could to better the situation and lead it to the most positive possible outcome.
"I made a very important decision. I wasn’t going to allow this disease to define me, discourage me and defeat me. Instead, I chose to redefine my life and turn it into something meaningful, something courageous and something beautiful."
The first step I took was to research a supplement protocol for cardiomyopathy in my nutrition textbooks. After clearing it with Dr. Ross, I now follow that protocol daily and consider it one of my “weapons”. I strive to walk a certain distance each day to stay active and I sleep every afternoon. The medication I am taking tires me and has slowed me down but I welcome the sleep and view it as just another ingredient in the recipe for taking care of myself.
The second step was having the defibrillator implantation surgery. I would be very untruthful if I said that day went completely smoothly. I knew I wasn’t going to be able to pick up my baby for the six week recovery period following the surgery and the emotions overpowered me. I hyperventilated going into the OR. One of the team members participating in my surgery that day thoughtfully and gently held my hand until I calmed down. That human touch, from a stranger, and the comfort it provided in a situation where I had such limited control, is a moment in my life I will always cherish. My electrophysiologist told me in my initial appointment with her that she wanted to ensure she kept me around for a very long time – such powerful words. I thought of her when I was shivering in the OR under the bright lights. Having the ICD was a way of protecting me from a sudden cardiac arrest, a way of protecting my children from a sudden loss. I look at my scar now as proof of bravery – that I was strong enough to show up for the fight.
The third step was to have my children (and nieces and nephews) screened with echocardiograms and ECGs at Sick Kids Hospital. The pediatric cardiology team wanted a baseline of their cardiac function and health to secure the ability to track each year any variances in their heart function. Thankfully, all results came back positive, noting normal cardiac function. Wanting the experience to be very positive for my kids, I explained to them that their hearts were being screened for Super Powers!
"Wanting the experience to be very positive for my kids, I explained to them that their hearts were being screened for Super Powers!"
At the beginning of this journey, when I was going to the hospital weekly, every time I would reach the doors of the hospital, the stinging behind my eyes would start and the tears would surface. Now, when I walk into the Robert R. McEwen Atrium at Toronto General Hospital for my clinic appointments, I find it to be a very welcoming, bustling place. I join the line at Starbucks and enjoy my chai latte as I head up to the Ambulatory Cardiac Clinic and wait to see Dr. Ross, engaged in my own care, supported by a team of exceptional professionals.
At my last clinic appointment, the nurse practitioner called me a “warrior” and that still makes me smile. Positivity is a very powerful weapon and although I am aware there are no guarantees, I have limitless faith that tomorrow is another day for ground-breaking research, another day to develop more targeted treatments and hopefully, one day, a cure. Until that point, I choose to battle on.
The fourth step was to put a plan of action in place to give back. My goals are three-fold:
To participate in research initiatives underway at Peter Munk Cardiac Centre that can further the understanding of both inherited dilated cardiomyopathy and heart failure.
To make a meaningful impact on the treatment and long-term prognosis for heart failure patients (with a focus on inherited dilated cardiomyopathy) by raising awareness and funding for key current and emerging initiatives aimed at early diagnosis, improved treatment outcomes and, ultimately, finding a cure.
Continue to realize that the struggle itself can be exhilarating and inspiring, choosing to go through each day more conscious of the goals and priorities that are most important to me; continue to make my children proud, to be a positive role model to them and to teach them how to roll with the punches, putting the best parts of themselves forward in every situation.