I was born October 11, 1976 on Canadian Thanksgiving weekend, a full five weeks early to the surprise of my family. I was raised in Edmonton, Alberta, Canada where I learned that hard work is the height of value and that playing hide-and-seek in with the neighbourhood kids was the epitome of fun not to mention a little bike riding, frog catching, and recording ourselves on cassette tape. #GoodOldDays
In 2016, at the national meeting of the Canadian Heart Failure Society in Montreal, Canada, I collaborated with Marc Bains and Dr. Sean Virani to create a patient-led advocacy organization for Canadians living with heart failure. The HeartLife Foundation of Canada is the first and only heart failure advocacy group in Canada run by patients for patientswhose mission is to transform the quality of life for people living with heart failure. The HeartLife Foundation has patient members all across Canada, and is actively engaged with the Canadian Cardiovascular Society, Canadian Heart Failure Society, Heart and Stroke Foundation of Canada and is a member of the Global Heart Hub, The Alliance of Heart Patient Organizations.
I have actively published in major cardiology journals such as the Journal of the American College of Cardiology: Heart Failure (JACC HF) and the Canadian Journal of Cardiology (CJC) providing patient perspectives on the latest treatments, research, and innovative clinical trials. I have been a keynote speaker, panelist, and invited speaker at a number of high-profile cardiology events and conferences such as the Cardiovascular Clinical Trialist Forum (CVCT), Heart Failure Society of America, American College of Cardiology and the Canadian Cardiovascular Congress.
I am a member on the Medical Services Commission of British Columbia, member of the Heart & Stroke women’s heart and brain health research steering committee and heart failure council, and sit as the only patient group representative on Health Canada’s Scientific Advisory Committee on Medical Devices Used in the Cardiovascular System (SAC-MDUCS).
I have started and re-started this blog so many times but I guess until now I have not really been ready to completely share this experience with the world. I was in heart failure for 9 years, had my first heart transplant for 3 years, and in January 2018 received my second heart transplant. I am driven to share my story more widely in hopes that my experiences may help someone else, and to help others through a charity I co-founded called HeartLife Foundation of Canada. I found that as I learned more about my condition, read about others’ stories, met with other patients and family carers, my perspective changed and so did my hope for the future.
This blog is my chronicle and this is my story.
June 17, 2005
Nick asks me to marry him. On HIS birthday. I said YES! I have the best fiance ever.
July 18, 2005
The day my then fiance, Nick, and I moved to BC.
July 18, 2005
The day I collapsed and was admitted to hospital. Two days later I was diagnosed with congestive heart failure. Ejection Fraction at 15% (55-65% is considered normal). My family was told that the next 72 hours were critical and that they should be prepared for the worst.
July 28, 2005
Home from the hospital amongst the cardboard boxes, our two cats and my family. Ejection Fraction at 40%. Good times.
September 1, 2005
First day of my Ph.D. program. Cardiologist told me I should probably withdraw from school. I said “nope”. Nick agreed.
October 7, 2006
Nick and I were married. It was an over-the-top extravaganza and it was awesome. Nick even designed an ice sculpture. My job was simply to show up. I now have the best husband ever.
Accepted a Faculty Position at the University of Victoria AND a Post-doctoral Fellowship at Harvard University. Faculty job to begin once postdoc is over. Officially exceeded all expectations. Mind. Blown.
April 10, 2010
Had a stroke. Lost use of right arm and developed aphasia (slurred speech). Discovered massive clotting in heart. Ejection Fraction at 28%.
July 10, 2010
Successfully defended my doctoral thesis. Take #that people who told me to quit!
Nick and I drove across Canada to Boston. An amazing trip and a dream come true for both of us. I love my country!
August 1, 2010
First official day as a Postdoctoral Fellow at Harvard University. Wicked. Awesome.
August 15, 2010
Found a cardiologist to take me on for the year and made an appointment.
November 1, 2010
ICD surgery and implant. Officially bionic. Weird but cool at the same time.
December 31, 2010
Times Square in New York City with Nick. Front row seats! A once in a lifetime event unlike any other.
July 1, 2011
First official day as a Faculty member at the University of Victoria. Just so happens Nick and I were at a conference in Lisbon, Portugal. Our FIRST time in Europe!
July 28, 2013
Officially home owners! YES!
August 21, 2013
Ejection Fraction at 15%. Hospitalization for episode of heart failure. Assessment for heart transplantation.
September 3, 2013
Accepted as a candidate for heart transplantation. First official day on the list.
October 4, 2013
MitraClip procedure performed to relieve symptoms of severe mitral regurgitation. Preliminary results are encouraging. Status quo and still on the list.
March 5, 2014
Extreme exhaustion. Hospitalization for episode of heart failure. Taking an Inotrope Vacation.
March 17, 2014
Had my first open heart surgery. Received my Left Ventricular Assist Device (LVAD) Vlad. #WorldSeriesOfHearts
Began having spontaneous angina, was referred to a women’s heart health specialist and an expert in microvascular disease and coronary vasospasm.
March 6, 2017
Had provocative ergonovine testing (fancy angiogram) to assess whether I was, in fact, having AND FEELING the spasms I was reporting. Results were ‘impressively positive’, with no coronary disease present and one minor lesion at 40%.
First day as a Faculty member in the Faculty of Education at the University of British Columbia! Finally found my true academic home.
December 26, 2017
Admitted to University of Alberta Hospital with chest pain that could not be resolved with nitro spray while in Edmonton visiting for Christmas.
I had a heart attack, and I felt it ALL.
December 27, 2017
Echocardiogram revealed depressed heart function, EF = 45%. Angiogram revealed 90-100% blockages of ALL coronary arteries. In transplant this is called cardiac allograft vasculopathy (CAV) – in layman’s terms chronic rejection. Interventional cardiologists put in a series of stents (aka. a full metal jacket) on my proximal right coronary artery to restore blood flow.
Was informed I needed another heart transplant.
January 2, 2018
To buy more time in order to wait for a second heart transplant, a second angiogram followed by another series of stents (2nd full metal jacket) were placed in my left circumflex artery to help restore additional blood flow.
While in recovery, I suffered a severe hematoma in my left femoral artery.
I have never felt more pain in my entire life.
January 5, 2018
Nick and I were repatriated, or took a medivac flight, or smuggled, from Edmonton to Vancouver so I could be admitted to St. Paul’s Hospital (SPH) and listed for re-transplantation.
I was in shock. Nick was in shock. My family was in shock. My entire medical team was in shock because what I was presenting with was one of the fastest growing CAV – rejection episodes – my team has ever seen. I went from no CAV in March to complete rejection in December – 9 months!
So, I settled into SPH for what could potentially be a long wait and hoped that I would live long enough.
Was told to get my affairs in order.
January 9, 2018
Officially listed for a heart re-transplant.
January 22, 2018
An offer for a heart for me came in – it’s a match! Surgery to begin late in the evening.
January 23, 2018
In the early hours of Tuesday, January 23, 2018 I received my second heart transplant.
February 5, 2018
Released from the hospital with my new heart. Also – finally home from Christmas vacation >_<