Emily's story is featured by Patient Voice *
“I was working as a litigator in Toronto when I was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) — a rare and potentially fatal lung disease. When the symptoms began, I didn’t have time to be sick, so I ignored them. Eventually, I went to a clinic on my lunch hour. I planned to be back at the office by mid-afternoon to prepare for court the next day. Instead, I spent five days in Mount Sinai with multiple pulmonary embolisms.
What started as a long lunch became a week, then months, until eventually I had to accept that, truthfully, I didn’t know if I’d ever be able to go back. That was the hardest part. My career was everything to me. I had worked SO hard for it.
Even when I ended up in heart failure — and went into emergency open lung surgery — I was telling myself that, in a few weeks, I’d be back to work. I truly believed that. Instead, I spent eight days in a coma, and then I woke up in hell. I was weak, delirious, and psychologically traumatized, and I wasn’t improving. I was diagnosed with post-ICU PTSD. And while my life had been saved, very often I felt like the life I was left with wasn’t worth saving.
I had to mourn my former self. The Emily who put on pantyhose, a suit, and heels every morning and went off to court was gone forever. This wasn’t a detour. This was the new road.
I became a patient advocate. I joined the board of the Pulmonary Hypertension Association of Canada. I became a Patient Partner at the University Health Network, and I actually won an award for that work. That meant a lot. I never thought I would excel in anything ever again.
What I really want now is a family. Sadly, CTEPH has left me unable to have children naturally. And having children any other way means taking on a whole new uphill climb — a very steep hill.
That’s the most frustrating thing about a chronic condition like this. Just when you’re starting to make peace with it, it takes something else from you. But you keep putting in the work and finding your way.”
Emily
Niagara-on-the-Lake, ON
CTEPH
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