I am excited and anxious to finally meet my donor family

Five and a half years ago, I woke up from a double-lung transplant breathing as I hadn’t been able to in decades. Not just the volume or ease of it, but the absence of the fight that I’d become used to with cystic fibrosis (CF).

The lungs just worked. After a lifetime of coaxing, percussions, nebulizers, and hospitalizations, they worked. It was the most foreign and overwhelming sensation after so many years of struggling to breathe.

Most transplant centers encourage you to write a letter to the donor family within the first few months after surgery. It is monumental to write such a letter about your new life, as they grieve the loss of the person who gave you that. There truly aren’t words to express the enormity of gratitude in the midst of such trauma.

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My donor family reached out first. There was a letter waiting for me by the time I arrived home from the surgery and rehab. I hadn’t even found the feelings yet, let alone the words to describe this experience. I hadn’t figured out how to begin to bridge that impossible distance, and there they were, extending their hand before I could find the courage to extend mine. I have never forgotten that grace.

For three years, we exchanged letters on each anniversary. Carefully chosen words would travel between us, and we even exchanged pictures, putting faces to the lungs my donor and I now shared. I read about their grief and then, in the spaces between sentences, how they had begun to heal. They watched me live in a way I hadn’t before, and I prayed it would help reinforce the impact their loved one had.

It was one of the most sacred and complex relationships I have ever had, built entirely on loss and survival, existing in the same breath.

Bound together

And then, two years ago, they went quiet.

I understood. Grief isn’t linear. The anniversary of losing someone doesn’t get easier just because time passes. Many people never hear back from their donor family at all, so I cherished the time we had shared.

Then, recently, I got a call from Gift of Life. The family was requesting direct contact.

I have sat with those words for days now. No more letters filtered through an intermediary with carefully managed distance. Just us, two parties bound together by the most extraordinary and painful of circumstances, reaching out to each other in real time.

I am excited. The thought of knowing them more, of being able to say thank you in a way that letters never quite captured, and of understanding a little more about the person whose gift I carry in my chest every single day fills me with something I don’t have a precise word for. Gratitude doesn’t cover it, and love feels presumptuous. It lives somewhere in between.

I am also anxious. What if our grief and joy don’t sync up the way they did in letters, where everyone has time to think before they speak? What if direct contact brings up feelings I haven’t fully processed, like survivor’s guilt, and the complicated grief of living a life someone else made possible? What if it brings up feelings for them that are too much to hold?

A relationship unlike any other

In the CF community, we talk a lot about the transplant itself: the wait, the surgery, the recovery, the medications, and the milestones. We talk less about this part, where you are tethered, quietly and permanently, to a family you’ve never met, who are living through a loss that made your second life possible.

This relationship is unlike any other. It doesn’t have a rulebook, and it evolves in ways you can’t predict and sometimes can’t control.

If you are a CF transplant recipient navigating your own version of this, I want you to know that you are not alone in the complexity of the experience. It is allowed to be both beautiful and hard. You are allowed to feel excited and anxious at the same time. Those feelings are not contradictions, but the truth of what it means to carry this gift.

Even though I’m nervous, I will show up for it, because that is what this gift deserves. It doesn’t have to be worded perfectly, but with presence, honesty, and the willingness to meet them where they are.

The future of this relationship is unknown. It might be a single conversation. It might become something I can’t yet imagine. Either way, I am grateful for every letter we exchanged, and for the two years of silence that reminded me how much their presence had meant.

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