How I’ve approached writing letters to my organ donor family

“It is only because of your generous gift of life that I am here. This is the hardest letter I have ever composed. Trying to capture the full range of emotions in a single letter to say thank you is more difficult than I imagined.”

These are the words that began my first letter to my donor family in December 2021. Diagnosed with idiopathic pulmonary fibrosis in January 2017, I was fortunate to receive a bilateral lung transplant in July 2021.

Although I started writing the letter shortly after my transplant, I waited several months to send it. I had been talking about writing it during a Pulmonary Fibrosis Foundation ambassador call, when fellow ambassador Jim Carns reminded me that grief lasts longer than joy. While I was joyful following my transplant, my donor family was likely still grieving.

I took those words to heart and refined my letter over the next five months.

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What I’ve shared with my donor family

There are guidelines for writing a letter to your donor family. I followed the guidance from Infinite Legacy, an organ procurement organization, when composing my letter.

I wanted to make a good impression. At the same time, I understood I was meeting someone virtually for the first time. Generally, you’re encouraged not to overshare personal information.

In my first letter, I used only my first name and my general location of central Virginia. I didn’t provide my home address, full name, or the name of the hospital where I received my transplant.

I did provide a brief chronology of my transplant experience to my donor family. I felt it was important for them to know that no time was wasted sharing the gift of lungs I received from their loved one:

“I received the call from my transplant coordinator on July 9, 2021. On July 10, I was taken into surgery at around 3 a.m. and into the intensive care unit at around noon that day. On July 11, shortly before 5 p.m., I was extubated to take my first breath with my donor lungs. It was such a beautiful feeling.”

I shared more information in that letter and in subsequent ones about what receiving a transplant has meant to me. I do write my donor family several times a year now. I included a Donate Life: Donor Family lapel pin in my most recent letter.

I want them to understand the difference my lung transplant has made. I shared with them the joy of the birth of my second grandchild, and I’ve shared how I was doing medically on each anniversary of my transplant.

I have no idea if any others received a gift from the same donor, but I want the family to see the legacy their loved one created through organ donation. In a way, my donor lives on through me. It’s important to me to share moments and milestones in my life with their family.

As I draw closer to the third anniversary of my transplant, I am preparing another letter. I will share that I haven’t received any responses. While I’d love to know more about my donor, their family may not be ready for that. They may never be ready. I am OK with whatever they decide.

April is National Donate Life Month. I start each day with a prayer for my donor and their family, and not a single day goes by that I don’t think of them. Organ donation is the only reason I’m here. Were it not for my donor’s gift, I couldn’t write this column to share my journey. In their honor, it’s up to me to make every breath count.

Note: Pulmonary Fibrosis 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 Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.