I was in Whistler with a client in early September when I started to feel off. Normally, any chance to be in Whistler would have me planning a hike or finding any excuse to spend time outside. Instead, as someone who rarely got sick, it was hard to pinpoint what I was feeling – I only knew it didn’t feel good. When the rest of the team went out for the night after our event, my intuition called me back to my hotel room to rest. That same intuition woke me at 4am telling me to go home. I got up, checked out of the hotel and drove back to Vancouver all before 7am. That afternoon I started vomiting, which seemed to explain it all – I had the flu! Of course… what would lead someone to think otherwise when the symptoms appeared so straightforward? But they weren’t straightforward. I could barely walk from my bedroom to my living room, I progressively worsened, and on September 9 I journaled that I was afraid I would die in the night and no one had keys to my apartment to even discover my body.
I called 911 at 3am on September 11, 2024. Two hours later they called back to see how I was doing. Hindsight, maybe an uber would be better next time. At 7am the paramedics arrived. I was in cardiogenic shock due to late-stage heart failure. This seemed inconceivable. I later learned if I hadn’t called that night, my fears were right and I was likely to have died in my bed. Note to women out there – when questioning whether asking for help is the right thing to do, it absolutely is.
Within 48 hours I received what felt like thousands of tests, after which the cardiac team at VGH determined that I have a very rare auto-immune disorder called Giant Cell Myocarditis. If you google it, the first sentence includes the words “often fatal”. I was told they couldn’t handle my case and had to be transferred to St. Paul’s – I was terrified and didn’t want to go, but the team made it clear it was the only way I would survive. That night I was placed on life support in the surgical intensive care unit at SPH.
I spent 6 days on ECMO. There are moments that are clear in my memory, and others I’m reminded of by the family who stayed with me alongside the people monitoring the machine keeping me alive 24 hours a day. On the final day, my Dr. told my parents they had to switch off the machine and hope my heart would beat on its own, there was no guarantee. Luckily, the beat went on. Over the course of 3 months, the incredible team of cardiologists, cardiac surgeons, nurses, clinical nurse specialists, fellows, and every other technician at St. Paul’s supported me in trying to save my heart. I received an implanted cardioverter defibrillator (ICD) as a first line of defense lifesaving mechanism so that I could leave the hospital. It didn’t go well, and I wasn’t guaranteed that it would save me if needed, but I was desperate to breathe fresh air again. Although I wasn’t able to leave the hospital for long, I was able to escape hospital food on a couple of attempts at independence.
We weren’t successful in saving my heart.
Upon my 4th readmission to hospital, the last resort before transplant was LVAD, which the surgeons discussed in detail. I feel lucky we didn’t have to take that step because on December 10, 2024 I was told I had been listed for heart transplant. This was my only remaining option given my heart was too weak to accept the LVAD, the same way I hadn’t been a candidate for the other lifesaving methods they had proposed previous to that. Later that same day, I was told that (miraculously) a heart had arrived that was a perfect match. I tried to send them away not believing it was possible to have happened so soon. When my cardiologist called me to confirm, one of my first questions was “does that mean I can eat whatever I want tonight?” having been on a limited diet and strict fluid restriction for months. It’s the small things 🙂
The next morning, I received a new heart. What a miracle. I still have the disease that almost killed my heart the first time, so there is that to contend with. Transplant is a tradeoff: one set of deadly problems for a different set of daily challenges. It isn’t a cure; it’s another chance AND today is 1.5 years from the day I was told my life would be saved. I now spend time celebrating the beauty, simplicity, and simultaneous complexity of life with the people I hold most dear. My life was already full of rose-smelling diversions, chasing joy and spontaneous fun before I got sick, but now it is higher priority than ever before.
The transplant wasn’t the end of that story; in many ways it was the beginning of an entirely new one. From the outside, the surgery looks like the happy ending. The crisis has passed, the hospital stay is over, and life appears to return to normal. For the person living it, nothing is ever truly normal again.
It is difficult to describe the strangeness of carrying someone else’s heartbeat through the world. Every morning I wake up because another woman no longer could. That reality never leaves me. Friends and family quite naturally return to their lives once the emergency is over, and I continue learning how to carry the physical, emotional, and existential weight of everything that happened. It is profound; the miracle of having your life saved by another in this way, and there is something profoundly lonely about living an experience so few people could every truly fathom – I can hardly fathom it myself – while feeling overwhelmingly grateful for the privilege of living at all.
My illness was fast and violently furious, so I don’t believe I ever fully processed the truth of what was happening at the time. I knew it but didn’t accept it. I am a fiercely determined, willful, bright-side looking woman. Only now, with time, have I begun to understand it all. For the woman whose heart has given me life, it is with immense gratitude I carry you with me always and promise to keep chasing adventures and finding joy.
Self-love is so often unrequited, but has taken on new meaning. Now every silly adventure, all the laughs, every walk along the seawall and ridiculous detour to smell the flowers feels like a small way of saying thank you. My ways of honouring the extraordinary gift another woman gave me. For both of us.
