Tarya Morel
Looking back, I’ve had difficulties with shortness of breath for as long as I can remember, but it never really occurred to me that it might be a serious medical issue. When I became pregnant, my breathing issues got worse, and they were joined by bouts of dizziness and fatigue. Of course, pregnancy brings with it all sorts of symptoms, so no one thought much of it.
But then my son was born, and none of my symptoms went away. I kept going back to my doctor saying, “I’m not feeling any better” and “This isn’t just new-mom-tired.” I was not okay.
When I finally got diagnosed with severe pulmonary arterial hypertension (PAH), my family doctor explained the disease, but it was all just white noise to me through the adrenaline. In the end, she looked at me sadly and told me to go home and enjoy my time with my baby. At home, I made the mistake of consulting Dr. Google. The statistics painted a very bleak picture. It looked like I had, at most, one good summer left with my new child. I was crushed; the dreams I had for my future seemed impossible.
That was 12 years ago. I’ve had my ups and downs, but I’m still going strong. I just celebrated my 10th anniversary at work, and I’m thriving. Unfortunately, my marriage didn’t survive my diagnosis and all that came with it, but I’ve since remarried a wonderful man. Together, we’ve created a big, blended family — the family I’d always dreamt of. I’ve lived a whole life I didn’t think I’d get to have.
But the reality is that this is a progressive, incurable disease. So even when you’re stable on a therapy, it’s always in the back of your mind that it might stop working, and that you’ll have to move to another treatment. I’ve been through that. Fortunately for me, science has always stayed a step ahead of my disease, but I’m running out of options.
This is why it’s so frustrating and scary when there are therapies that my community can’t access. I’m in Facebook groups with PAH patients living in the U.S. who are receiving access to therapies that we don’t have in Canada and there are some truly amazing stories of how well they’re doing. I see people posting their test results, showing dramatic improvements to their heart function, and people excited to have cleaned the house without feeling exhausted. I see people going hiking, stunned that they can breathe again. There’s nothing I would love more than to be able to go hiking with my family.
It’s a hard pill to swallow that where I live might determine how long and how well I live, how long I can be productive and contribute to society, and how much time I get to spend with my husband and our children.
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