For months, I agonized over how to offer my condolences to people I’d never met for a loss about which I had no details. I imagined different situations. How different it might be for a parent to receive the letter, compared to a child or a sibling. Because organ donation is an anonymous process, my doctors gave me no information about my donor after my transplant ― not gender, not age and certainly not cause of death. My social worker told me I could write a letter to the family of my organ donor and I might be able to learn more about my donor if someone responded.
After reading a few sample letters other recipients had shared online, I decided all I could do was write about myself. Thinking the letter’s recipient(s) would want to know who I was and how I was doing, I described my life before the transplant, and why I needed a new heart and lungs. I wrote about how my life has changed since my operation, and my goals for the future. I thanked them for saving my life.
With my 24th birthday in mind as a soft deadline for my letter, I delivered a hand-painted watercolor card filled with my best condensed handwriting to my social worker near the end of April. A weight lifted when I had finished, as if I’d just turned in a final paper. Now, when people asked if I knew anything about my donor, I could say I had taken steps toward knowing more.
In July, after celebrating a full year with transplanted organs, my thoughts returned to the letter. I’d heard I would be notified if and when the letter was delivered to my donor family. On a whim, I emailed Donor Network West, the organ procurement organization involved in my case, to check for an update. A call the next morning informed me the organization had not received any correspondence from me. To my dismay, the letter was lost, adding another item to my list of disappointments in my transplant team. I wrote again, this time in an email, promising future handmade cards. Still nothing.
I believe it’s important that my donor family knows how often I think about them and my donor, and how hard I work to care for their gift. As I return to a routine that isn’t entirely dictated by my health, I can see more friends, some of whom I lost touch with while in the throes of medical drama. At coffee with a friend from college, I was taken aback when she asked if I feel better now than I did before my transplant. Admittedly, she doesn’t know much about pulmonary hypertension, and I was pretty good at hiding my symptoms when we lived together.
When my team was listing me and I was forcing myself to picture best-case outcomes, I didn’t imagine the life I have now. My transplant changed my life in truly unimaginable ways. I not only can breathe easier, but my whole circulatory system is healthy now! I’m thriving, and I want my donor family, in addition to my family and friends, to grasp just how transformative this has been.
With the holidays approaching, I am writing again. I delight in celebrating birthdays and other occasions with my family, but recognize the inherent unfairness. My donor family spends their holidays without the person who saved my life. I know that I didn’t cause or hasten my organ donor’s death, and that putting their gift to use is the one thing I can do to help some good come out of their loss. Still, I understand that their family might not be ready to rejoice with mine.
It was surprisingly painful for me to write my first thank-you letter, and I went through several drafts. I had to reflect on my life with PH and how close to death it brought me, in addition to empathizing with my donor family’s grief. I cried a lot more than I ever expected I’d cry while writing a thank-you card. Everyone has to go at their own pace, but I encourage other recipients to start writing as soon as possible.
Even though my donor family has not responded, writing to them has brought me closer to closure. The act of describing one’s life before and after transplant is an important step in processing the amorphous mass of emotions involved.
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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.