Hope Floats

When I was diagnosed with Pulmonary Hypertension in December 2018, I was too sick to try any other medicine than the IV pump. And though it saved my life and gifted me with a few more precious years, I can’t help but think about the circumstances that allowed for that solution to be sustainable, at least for a little while.

I lived with someone. I had family close by. I had dexterity in my limbs and the mental function to handle the logistics of everything that came with the pump, including the inevitable hospitalizations when I had problems with my chest catheter.

If I had been diagnosed now, I don’t know that I’d meet all of those needs. I live alone, and I’m quite isolated. No one to mix medicine for me if my hands are swollen, or to watch my dog, or to pack a bag for me if I’m already at the hospital in an emergency.

I want patients to have more choice in their treatment than I did. The science is there—Canada is slowly approving a new shot, province by province. In the States, there are medicines administered by inhaler. Maybe one day, we’ll be so far along that such an invasive treatment as a Hickman line connected to a 2lb infusion pump with a cassette full of self-mixed chemicals, will be considered obsolete, and future patients and medical practitioners will look back and say how incredible it was that we once had to deal with all of that, just to breathe.

Almost six months have gone by since I’ve had the privilege to come off the pump, and I’m going to use that new-found freedom to champion my fellow patients, and versions of my younger self.

Every year, I’m going to host a summer challenge called “Kate’s 5K for $5K”. From the start of summer, until my birthday on August 29th, I’ll be swimming 5 kilometres and collecting donations to fund awareness in hopes for less invasive treatments.

I’m choosing to swim because it’s a common sacrifice for pump patients who can’t submerge in water and risk a Hickman site infection. The pool, a proper bath, a hot tub soak—these are all things we dream about while trying to be grateful for being hooked up to the machine that grants us more time. But sometimes, those are the things that make us feel better than an artery full of epoprostenol ever could.

And since fellow spoonies know not to make promises with their energy, I’m inviting family and friends to join my swim team, so you can donate distance or funds—whichever floats your boat - to help reach our goal. Simply tag me in a pool selfie with the hashtags #ks5for5 and #HopeFloatsForPH and I’ll be sharing updates to our distance on my Instagram stories.

Head to the link in my bio for more information and know that 100% of your donation goes to the cause.  

With love, from the bottom of my Squishy Little Heart.