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About Me

JillianneI 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 

Then. I grew up.

I am currently an Assistant Professor in the Department of Curriculum and Pedagogy in the Faculty of Education at the University of British Columbia. Before my arrival at UBC, I was Associate Professor of Educational Technology and Psychology in the Faculty of Education at the University of Victoria (UVic; 2011-17), and a Post-doctoral Research Fellow at the Harvard Graduate School of Education in Assessment and Learning Technologies (2010-11). I holds a Ph.D in Educational Psychology from Simon Fraser University, a M.Ed in Educational Psychology with a specialization Instructional Technology and a B.Ed in Secondary Science and Art Education from the University of Alberta. Learn more about my research here.

My story in brief

In 2005, I was diagnosed with idiopathic cardiomyopathy following a sudden onset of heart failure. I was stabilized with medical therapy and continued on with my doctoral work until 2010 when I suffered a stroke. During my post-doctoral fellowship I had surgery for an implantable cardioverter-defibrillator. In the summer of 2013, I was hospitalized with end-stage heart failure and placed on the heart transplant waiting list. While waiting for a new heart, I received a left ventricular assist device in March 2014. In October 2014, I received my first heart transplant. On December 26, 2017, I suffered a massive heart attack due to non-reversible severe cardiac allograft vasculopathy, a type of transplant rejection, and was placed on the heart transplant waiting list for a second time. In January 2018, I received her second heart transplant. My journey is documented here on my blog, Heart Failure to Harvard, in “I am the Clinical Trial” for the JACC:HF Journal, and in the documentary feature “My Broken Heart

Heart failure advocacy – the HeartLife Foundation

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).

In 2019, my co-founders of the HeartLife Foundation and I, Marc Bains and Dr. Sean Virani, received the Dr. Harold N. Segall Award of Merit from the Canadian Cardiovascular Society “in recognition of their significant contribution to the prevention of cardiovascular disease and promotion of cardiovascular health in Canadians”.

Story Timeline

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.

  • July 18, 2005

    The day my then fiance, Nick, and I moved to BC.

  • 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 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.

  • March 2010

    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!

  • July 2010

    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

  • April 14, 2014

    Released from the hospital following my LVAD surgery and all kinds of complications. #HardToKill

  • October 7, 2014

    While on the phone with a hospital committee (I was NOT working … volunteering) I received THE CALL that a heart was available.

    Also. My 8th Wedding Anniversary!

  • October 8, 2014

    In the early morning hours I received my gift of life from an anonymous donor. #NoWords #JustGratitude

  • April 12, 2015

    I participated in the 5km Transplant Trot in Vancouver. I can walk and breathe at the same time. #AlmostNormal

  • April 13, 2015

    I had the last of my hardware removed, my (unplugged) ICD. Officially #UnBionic

  • May 16, 2015

    I flew (yes, FLEW!) back to Edmonton to surprise friends and family for the 5km Transplant Trot. I can still walk and breathe at the same time. #DefinitelyAlmostNormal

  • June 2015

    Nick graduates with his Ph.D. 

  • July 1, 2015

    First day back at the University of Victoria. Well, after the holiday, that is! #SoFarSoGood

  • October 7, 2015

    My 9th Wedding Anniversary

  • October 8, 2015

    My First Heart Birthday!

  • October 11, 2015

    Competed in the 8km Road Race at the Victoria Marathon. CBC Wrote a Story.

    Also. My 39th Birthday.

    Also. Canadian Thanksgiving.

  • January 9, 2017

    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%.

    Treatment for coronary vasospasm, or Prinzmetal’s Angina, began.

  • July 1, 2017

    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 >_<

  • January 23, 2023

    5 years post-second transplant – alive and thriving!