Nick asks me to marry him. On HIS birthday. I said YES! I have the best fiance ever.
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.
Nick asks me to marry him. On HIS birthday. I said YES! I have the best fiance ever.
The day my then fiance, Nick, and I moved to BC.
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.
Home from the hospital amongst the cardboard boxes, our two cats and my family. Ejection Fraction at 40%. Good times.
First day of my Ph.D. program. Cardiologist told me I should probably withdraw from school. I said “nope”. Nick agreed.
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.
Had a stroke. Lost use of right arm and developed aphasia (slurred speech). Discovered massive clotting in heart. Ejection Fraction at 28%.
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!
First official day as a Postdoctoral Fellow at Harvard University. Wicked. Awesome.
Found a cardiologist to take me on for the year and made an appointment.
ICD surgery and implant. Officially bionic. Weird but cool at the same time.
Times Square in New York City with Nick. Front row seats! A once in a lifetime event unlike any other.
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!
Officially home owners! YES!
Ejection Fraction at 15%. Hospitalization for episode of heart failure. Assessment for heart transplantation.
Accepted as a candidate for heart transplantation. First official day on the list.
MitraClip procedure performed to relieve symptoms of severe mitral regurgitation. Preliminary results are encouraging. Status quo and still on the list.
Extreme exhaustion. Hospitalization for episode of heart failure. Taking an Inotrope Vacation.
Had my first open heart surgery. Received my Left Ventricular Assist Device (LVAD) Vlad. #WorldSeriesOfHearts
Released from the hospital following my LVAD surgery and all kinds of complications. #HardToKill
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!
In the early morning hours I received my gift of life from an anonymous donor. #NoWords #JustGratitude
I participated in the 5km Transplant Trot in Vancouver. I can walk and breathe at the same time. #AlmostNormal
I had the last of my hardware removed, my (unplugged) ICD. Officially #UnBionic
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
Nick graduates with his Ph.D.
First day back at the University of Victoria. Well, after the holiday, that is! #SoFarSoGood
My 9th Wedding Anniversary
My First Heart Birthday!
Competed in the 8km Road Race at the Victoria Marathon. CBC Wrote a Story.
Also. My 39th Birthday.
Also. Canadian Thanksgiving.
Began having spontaneous angina, was referred to a women’s heart health specialist and an expert in microvascular disease and coronary vasospasm.
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.
First day as a Faculty member in the Faculty of Education at the University of British Columbia! Finally found my true academic home.
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.
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.
Urgenty.
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.
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.
Officially listed for a heart re-transplant.
An offer for a heart for me came in – it’s a match! Surgery to begin late in the evening.
In the early hours of Tuesday, January 23, 2018 I received my second heart transplant.
Released from the hospital with my new heart. Also – finally home from Christmas vacation >_<