On March 17, 2019, I was attending the American College of Cardiology annual meeting in New Orleans. I was a featured speaker amongst a distinguished group of doctors from Canada, Mexico, and the United States. One evening after the conference events, I found myself In the midst of a St. Patrick’s Day parade of sorts (it is New Orleans – or as they say down south NOLA – after all). I was surrounded by confetti, green, red and gold beads laying on the ground which I imagined were flung from the balconies of the French-colonial hotels, bars and bistros that line Bourbon Street. I smiled amidst the chaos of the drunk and disorderly crowd, most wearing clothing or hats with shamrocks, as I stepped over empty plastic hurricane bottles (a slushy drink with several ounces of alcohol in it). I walked slowly by, watching party after party, witnessing people enjoying life just because they can. I did not partake in the festivities as the others did, but I understood the fun, joy, and the selfless abandon that opportunities (excuses?) such events provide.
My joy and emotional freedom is from something else.
On March 17, 2014, I was given what was to be my first real chance at life with my LVAD, I lovingly call Vlad. It has been 5 years – 5 years to the day that Vlad took over the pumping of my heart while I waited for my first transplant. Vlad tested me to my limits, made me face my mortality for the first time, thinking that I might actually die, but I survived and through it, Vlad gave me back some of what I had lost and left a gift in the place of rest. For the first time in almost a decade, Vlad made the blood flow throughout my body, my hands and feet were tingling, my nose was warm, I had energy again, I could breathe without effort, and every muscle in my body didn’t burn when I walked. And through Vlad’s profusion of blood to my brain, awoke a new consciousness that would shape the rest of my life.
March 17 will always be a day that was the end of my “natural” life but the beginning of a new extraordinary one – one I now call my HeartLife.
To give you an idea of how I came to this conclusion, to illustrate, I include below the text of
But before I do, I need to tell you MY truth.
This – Is me.
This – Is also me.
And this – Is me 5 years ago, almost to the day.
I AM a survivor. And I live and thrive today because of people like you. People like my panellists – especially people like
My slides don’t tell you everything. A picture never can. Only my voice, strong and true, can tell you that in the last 5 years alone, I have had an LVAD, 3
Only my voice can tell you that.
Only my words can tell you what you need to hear.
This is my blog (Slide 5). Heart Failure to Harvard.com
I named it this after my journey, my odyssey, with heart failure and my success in living with it. From the prairies of Alberta, Canada to the hallowed halls of Harvard University where I completed a post-doctoral research fellowship – while in heart failure.
My blog was my first way of putting words to this experience. An extension of my being, a form of therapy, that quickly became a source of support for others which, I now understand was to be my first steps toward advocacy in heart failure.
Two years ago, a fellow patient –
Since our founding, HeartLife has been working closely with our physician and nursing colleagues aiming to raise the profile of heart failure including calling on our government to do their fiduciary duty to Canadians by supporting system transformations needed for our ageing and ailing population. In 2017, we collaborated on a call to action published in the Canadian Journal of Cardiology along with many of the most distinguished heart failure clinicians, scientists, and scholars in Canada.
This past December, we officially went international, where I was invited to speak at the Cardiovascular Clinical Trialist forum in Washington, DC. The experience of such an event is unparalleled and has resulted in a patient perspective piece for the Journal of the American College of Cardiology: Heart Failure (JACC:HF) where I call on clinical trialists to listen to patients and consider patient-reported outcomes and patient-reported experiences alongside other outcomes such as cardiovascular death and all-cause mortality.
In January of this year, HeartLife went to Rome (!) and is now officially a member of the International Heart Hub’s Heart Failure Council, and by association members of the World Heart Federation along with our sister patient organizations from around the world including the UK, France, Germany, Italy, Egypt, Brazil and Mexico to name a few.
But back home, HeartLife has an active social network (HeartLife Canada – Help for Hearts with Heart Failure) through which we receive feedback from our members often. In this case (Slide 9) providing us with insights by bringing to life the cognitive impairments many heart failure patients experience – including forgetfulness, losing words, attention deficits, and issues with problem-solving.
A paper commenting on our informal survey was just accepted to the Canadian Journal of Cardiology with TWO patients as lead authors. I commend the editors for including patient voices in this way.
We also work closely with national partners (Slide 10) – such as the Heart and Stroke Foundation of Canada whose 50-year history, and annual reports often shape and drive policy changes at the national level and result in focused initiatives in the Federal Budjet.
Which leads me to my last slide (Slide 11) – TRANSFORM HF – highlighting a national initiative led by
So you see, although a heart failure and transplant patient, who has been through unspeakable pain and suffering, it is this pain that has brought to me a new purpose 5 years after my natural life ended. A purpose that continues, and that many patients are motivated to obtain they just need the support to make it happen. To turn the tragedy of heart failure into a truly extraordinary heart life.