Honoring my donor throughout my complex transplant journey
Allowing space for the complicated emotions I feel as a transplant recipient
Every few months, a viral video circulates. It features a father who has a chance to listen to his son’s heart, now living in a stranger’s chest. Or a daughter who valiantly offers a kidney to her ailing father. Or maybe the story of a long-term transplant survivor who is still in touch with the family of the individual who saved her life years before.
The relationship between donor and recipient is precious. The glimpses we see in the media illustrate the power of the decision to donate. They outline the lasting impact it can have on the donor’s family and each life saved in the process.
With that said, the experience of being an organ recipient is complex and reaches far past the moment when this selfless decision is made.
Embracing my emotions
Following my transplant, I was living in survival mode. My complications after the procedure stacked up at an overwhelming rate. When I was finally discharged to home eight months later, I needed a ventilator, oxygen concentrators, and visits from home healthcare aides. In many ways, that sense of survival never really ceased.
Through the chaos, my family and I never had the chance to celebrate the absence of pulmonary hypertension in my body, as we faced the presence of so many other unfixable issues. Even today, it can be difficult to remember that the organs in my chest are not my own, as they’re still failing. Being so accustomed to illness throughout my childhood, the continuation of illness in my life has clouded the timeline that offers a division of “before” and “after.”
In recent years, I’ve made an effort to turn my gratitude into action. I believe transplant recipients have a right to a range of emotions. This journey is not straightforward, and it’s much more complex than the touching stories that are occasionally shared on the news. I work hard to honor each emotion I feel. But I also never want gratitude to disappear from the list.
Even on the days when this new body does not cooperate well together, my love for my donor is full and sacred. But it’s also, sometimes, far away. It sits at the end of a long hallway, and to reach it, I must first overcome grief, confusion, and guilt that my life and body have not provided the perfect host for the generous gift that was offered to me.
It’s an active decision to walk with all of these complicated emotions, gathering them close to my chest, while also taking steps to embrace the thankfulness that is waiting for me at the end. I will never simplify the experience of being an organ recipient. And I want to honor the emotional complexity that we are allowed. But the generosity of organ donors feels like a more straightforward truth. Meeting this decision with a deep sense of gratitude is much easier than the effort that it takes to process the rest.
This life is not what I imagined. It’s also so much better than the initial prognosis that was handed to me years ago. The grief and joy can give me whiplash some days. But through it all, I hope my donor knows that I carry them with tenderness. It’s an honor to live for us both with each day gained.
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.