When I was 19 years of age my 11 year old cousin had a sudden cardiac arrest while jogging in gym class. After much investigation into why, my family were told that my father, my aunt, my younger cousin and myself all had a hereditary disease called Hypertrophic Cardiomyopathy (HCM). Two years later I was advised that with only two treadmill tests they determined that I had been wrongly diagnosed and di not have HCM.
When my aunt passed away at the age of 52, I decided to get retested. I was immediately told I did indeed have HCM and it was advanced because my disease went untreated for the past 20 years. Shortly after that I had my first Internal Defibrillator (ICD) put in and on that same day my father (67) died while being #1 on the heart transplant list. Shortly after that my cousin (31) died. In one year I had lost so much and suffered enormous trauma. I was mad at them for leaving me alone when I needed them most. I was 39 years of age.
Six years later I had a sudden cardiac arrest in my living room. Not knowing what to do, I went to bed, got up in the morning and drove myself to work. A friend insisted I call my cardiologist who promptly told me to get to the ER immediately. I was started on Amniodarone (which I stayed on for 12 years) and suffered for months from the side effects.
The next year the wires on my ICD broke and while conscious I was shocked 6 times. I have never been so terrified in my life, this thing in my chest that was supposed to protect me was causing me pain and there was nothing I could do about it. I wanted to rip my ICD out of my chest. While in hospital I was shocked 2 more times before my ICD was turned off and I had a laser lead extraction to remove the faulty wires. At a checkup a month later it was determined that the new ICD wasn’t working so I had the surgery again.
In 2018 I started to suffer shortness of breath, bloating, sudden weight gain and severe fatigue but my cardiologist kept reassuring me it was not my HCM. It was my weight, my age, my sex, my hormones or what I ate. After a year of complaining I ended up in the ER where I was advised my HCM was end stage, I was in severe heart failure and I was being referred to the heart transplant team in Vancouver, BC.
I quit alcohol, changed my diet, started going to yoga 5x a week, took up ocean kayaking and meditated regularly. With those changes and the care and treatment from the transplant team I got an extra 6 years with my original heart. In October 2023 (2 days after returning from a trip to Europe) I was advised it was time for transplant so I went through two months of extensive testing. I was listed for transplant on January 23, 2024 at the age of 57 and received my first phone call on April 3, 2024 but the heart was not viable. My family was devastated as they worried that I wasn’t going to make it to receiving a new heart. They watched me fight infection after infection and develop severe anxiety. I received a second call on November 14, 2024 but an hour before surgery they again told me the heart wasn’t viable. I finally received my transplant on December 1, 2024. Unfortunately, 5 weeks later I was back in the ER with a massive cardiac effusion that needed to be drained. I’m 7 months post transplant and struggling to learn how to live a completely different way in every aspect of my life. It’s a slow, frustrating, emotional, overwhelming journey but I know it’s all leading to a long life filled with a lot of love, laughter and new adventures.
During the past 7 years I didn’t let my health stop me from living. I’ve climbed up a live volcano in Bali to watch the sunrise above the clouds. I marvelled at the Giants Causeway and huffed and puffed up and down the Carrick-a-Rede Bridge in Ireland. I climbed up high hills in Hawaii, kayaked the Colorado River fighting 65mph winds. I went to France and walked the insanely steep roads of Mont Saint-Michel Commune, I hiked 300 feet up the White Cliffs in Etretrat, and I saw the Eiffel Tower in Paris. During all my transplant testing I even managed to sneak in a trip to visit New Orleans for New Years Eve. My next trip will be visiting Mexico for the Day of the Dead.
