Celebrating Donors and the Gift of Time
It’s difficult for me to identify when an organ transplant became a genuine possibility within my personal journey. For my parents, it was certainly when I was just 4 years old, at my pulmonary hypertension (PH) diagnosis. Like many, they heard from doctors that I would likely live only two to three years without a transplant and possibly three to five years with one.
Growing up, this knowledge was always in the back of my mind. But it was always vague and hypothetical, never something that I could wrap my head around. In many ways, I think I felt much more familiar with the idea of dying from my terminal diagnosis rather than surviving it via the extreme means of a heart-lung transplant.
Even when I was 16, I associated organ donation more with a choice on my driver’s license than my relatively immediate future. It wasn’t until I began enduring fainting spells, a result of severe heart failure during my senior year of high school, that transplant probably became more of a reality.
That year, as I was in my transition from pediatric to adult care, my specialist urged me to be evaluated for a heart-lung transplant. In the summer before I began college, I did just that. This began a strange four-year stretch when I existed on the precipice of transplant, but never high enough on the list to be called, while also living on a university campus and attending nursing school full time.
While this period was riddled with confusion and contradictions, I remain extremely thankful that I was able to acclimate to the idea of receiving a transplant over an extended period of time. Many who are rushed into the reality amid a crisis are not granted this same opportunity. Ultimately, I was listed for five years before being moved up the list and finally receiving the call in August 2018.
Transplant is impossible to fully understand until you are living it. Now, three and half years after my procedure, I still sometimes struggle to remember that I am living with a new set of heart and lungs, gifted by a complete stranger. The whole process is complex and surreal. But in those years of waiting, I was able to prepare myself mentally, physically, and spiritually, to the best of my ability.
Looking back, I know that this preparation equipped me to endure my post-transplant life, which has been terribly difficult, but equally worthwhile. Transplant can have a range of success. I’ve witnessed miracles and tragedies in the process and feel that I fall somewhere in the middle of that spectrum.
My life since transplant is far from what I expected. I have endured many complications, including the removal of a portion of my right lung due to a blood clot. I live with a tracheostomy tube and am oxygen dependent. Travel is difficult, and I find myself grieving many experiences that I’d hoped to have once my diseased organs were replaced with healthy ones. It has all proved to be far from simple.
But ultimately, I would never go back and opt out of these years I’ve been gifted. In all of my wondering and doubt, I know that this time is infinitely precious and never to be taken for granted. Even if it is not the perfect life I hoped for, it is still wonderful in its own right.
Of course, stories like mine cannot exist without the stories of donors and donor families. In April, we celebrate National Donate Life Month. In my 26 years, I have had the privilege of witnessing donation stories from both sides of the exchange. I’ve seen organs save the lives of friends and peers, and I’ve also seen grieving families share the hope they feel knowing that the loss of their loved one has benefited and extended the lives of others.
Ultimately, I feel incredibly fortunate to have been one of the people in this world who was matched with a donor before I ran out of time. Navigating the timing of a transplant with pulmonary hypertension is a challenge. I would encourage all PH patients to familiarize themselves with the option that transplant provides, even if they don’t need it at the moment.
The most basic synopsis a provider will use to prepare you for a transplant is that it’s like trading one disease for another. I agree with this, but I would also add that it’s an extension of life I would’ve otherwise never been afforded. And for that, and the donor who gifted these days to me, I’m so incredibly thankful.
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.