PHighter Friday: Tarya

I had my first echo the day my dad was checked into palliative care. It was a Friday. I knew it had to be bad when I got a call two days later (on a Sunday, no less) from a cardiologist, asking me to come into the hospital the next morning. The day after my dad died, that same cardiologist told me I had a rare, progressive disease called pulmonary arterial hypertension.

I had recently completed a degree in public health, so I was no stranger to health research. The first thing I did was start googling around on this strange, unheard of disease. Hypertension? That doesn’t sound so bad. How bad could it be?

Bad.

I have since learned that google is not my friend when it comes to PH. The statistics floating around the internet, the infamous 2-5 year lifespan stat that crops up everywhere, are just plain outdated. The first treatment for PH only came out in the late 90s, and there are people still walking around who were in those original clinical trials. Yes, PH is serious. Yes, it still cuts too many lives far too short. But the drugs we have now and the research going into understanding and treating PH have made those statistics obsolete. 

When I was first diagnosed, I assumed the worst. I thought that I wouldn’t be able to take care of my son, that I would never work again, and that all I had to look forward to was increasing disability and death. I think the only thing that kept me from falling into a very dark place was my son, Alex, who was just a year old at the time. Regardless of what was going on in my life, he needed me to wake up with him, feed him, play with him, and do all of those regular, everyday things. He brought me a great deal of joy, and helped me to live in and enjoy each moment.

That was almost two years ago. Despite what looked like a grim future for me at diagnosis, I responded really well to the medication, and went back to work (part-time) less than a year after I started treatment. I went from 10 hours a week to begin with up to 20 hours a week within four months, and my nurse practitioner recently gave me the green light to go ahead and try working full time if I want to. I haven’t decided yet if I want to, but it’s nice to know it’s not off the table.

I think the biggest thing my journey with PH has taught me is this: The only difference between the living and the dying is that the living don’t realize they’re dying too. I take better care of myself now. It’s funny – I had to get sick to take care of myself the way everyone probably should. I make sure I get enough sleep, I eat well, I rest when I need to, but above all, I enjoy myself as much as I can. I still have days when I get angry, when I mourn the life I thought I was going to have, but then I do my best to focus on the good stuff.
Because life is short. For everyone.

The PHight or Flight Project would like to thank Tarya for sharing her incredible PH journey for  PHighter Friday!

* If you have an inspirational PH journey that you would like to share to help provide hope to those who are newly diagnosed, please contact me at phightagainstph@gmail.com. More information about sharing your PH journey for a #PHighterFriday can be found under the Share Your PH Journey/Contact tab.