I’m Celebrating 22 Years of Survival and Counting

On May 21, I celebrated 22 years of survival. On that day many years ago, I underwent a heart catheterization. Halfway through, doctors came out to inform my parents that the only diagnosis option was pulmonary hypertension (PH). My parents had previously been told that this was the worst-case scenario.

Over the next month or so, as my parents sat with me through appointments, they were informed that I would likely live only two to three years without a transplant, but perhaps I could live three to five years with one.

In the often comic realm of physician bedside manner, my parents also were informed that I would be unable to have children, a completely nonsensical comment that my mother will never get over. How could this possibly be important for a parent to know, considering their child was not expected to live past the age of 9? I suppose I can’t argue too much, given that I’m still here in my mid-20s writing about the tale.

Throughout my life with PH, and now my life as a heart-lung transplant recipient, I have always been aware that my condition is terminal. My life has always felt like a very fragile fine line. Each birthday has been a blessing, and I’ve chosen to never plan too far ahead for myself. The unexpected devastations and victories that come with a life of illness have forced me to be a very in-the-moment thinker. This is a necessity once you begin to surpass the statistics, and no one can predict how your days will play out.

I’ve always thought of my inability to be future-oriented as tragic. How terrible that I’m incapable of planning five or 10 years into the future! And don’t get me wrong, there is grief associated with this reality. But as I live through another year that was far from promised, I’m also grateful for this trait.

After a very difficult winter (one that was beginning to feel irredeemable), I have finally pulled myself back into a positive state of health. I’m walking every day, I dedicate more hours than I can justify to my job, and I’m slowly reintroducing myself to my social life, as friends and family get fully vaccinated.

I’m busy, I have energy, and I’m occupied with the daily landscape of my life. I don’t have time to worry about the longevity of transplanted lungs or how long this season of endurance will last. And after everything, this isn’t something I want to invest much thought in. How can a statistic or prognosis mean anything after you’ve fought through so many? Instead, I’m willing to celebrate this day, with no need for reassurance from tomorrow.

All of those years ago, sitting in waiting rooms, my parents could never have imagined this life for their little 4-year-old girl. At the time, there were such finite expectations of what a child with PH could be. But I became so many things — an artist, a high school and college graduate, a friend and sister, and in June, I will be a 26-year-old woman.

Witnessing the miracles that have carried me here, I have become my own best example, one that proves that I am not a number or a statistic. I am simply living from this moment to the next, with a set of hardships that I will work hard to defeat.

No one can tell me what is to come — not anymore. And nobody needs to. No more predictions can be made. This life of mine will be whatever it needs to be, and until then, I’m more than happy to live right here — a survivor of the odds, still counting the years.

***

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.