Breathless in Seattle

Kate Salonga represents PHA Canada at the 2025 PH Professional Network Symposium hosted by the Pulmonary Hypertension Association (US).

On September 18th, myself and 2 PH nurses (Kelly Kerwin of the Vancouver Clinic and Andrea Gardner of the Hamilton Clinic), drove down to Seattle for this year’s PHPN Symposium — the healthcare professionals’ and Pharma equivalent to the community conference hosted by PHA Canada the week before.

The goal was to have a Canadian patient speak at the opening session in addition to the American patient, this being the first collaborative symposium between PHA and PHA Canada.

I presented to a room of a couple hundred professionals, detailing the journey of a young woman’s apparent health and its sudden dive into the world of Pulmonary Hypertension. I used my moniker of "Squishy Lung Syndrome" to bring my signature sense of humour to an intense discussion, which included personal instances of pain, medical gaslighting, and the importance of advocacy in a healthcare system not designed for people like me.

“Generic healthcare can work, but not for someone with a rare disease like PH. With a little more strategic care on [the provider’s] side, and a promise to not let the marginalized folk fall through the cracks, [we] can ensure that words that are used commonly in the PH space like these:

“PROGRESSIVE”

“TERMINAL”

“LIFE-THREATENING”

..are words that we [as patients] can accept that we live with, but not words that we have to live by. ”

I closed my presentation with examples of “tiny wins” like my 2024 salpingectomy and making PHriends with different treatment experiences to remind the crowd of the humanitarian side of healthcare — since the stuff outside of the clinic is what matters most.

Me and my nurses (I have now adopted Andrea as one of my own) attended the full conference that weekend, joining sessions like PH Jeopardy, Trivia Night, Managing Medical Trauma, and New Right Heart Echocardiography Guidelines. The consensus in the room was that my presentation was emotional but that the harsh words needed to be said to remind providers that the subject of their studies and their practices is a human being with feelings and the unfortunate ability to experience trauma. I hope that the many follow-up discussions I had during our few days in Seattle—with providers, CVS, Johnson & Johnson, and even the makers of the very CADD pump I use—will help improve care for current and future patients across the continent.