Thinking of Those on the Giving Side of Organ Donation

April is Donate Life Month. I have struggled to think of something new to say about organ donation. Everything I’ve written for Pulmonary Fibrosis News has been inspired by, or is in response to, organ donation. I’ve talked about both pre- and post-transplant challenges, caregiver struggles, grief, celebration, and all that organ donation has done for my lung transplanted mom. 

I know many of you readers will be or have been affected by an organ transplant. Whether my patient-readers choose the transplant path or not, you can’t have IPF without at least having conversations about lung transplantation. I don’t need to make you aware or convince you why everyone should register to be a donor. You, more than anyone, know the importance of donating life.  

I want to keep this conversation going, but what can I say that I haven’t already said? I have been writing as someone whose life has been affected by the gift of a life-saving organ transplant. The one aspect of organ transplant that I haven’t delved into as a writer is the other side of that equation.  

Today, I am thinking about donors and donor families. My only experience on the other side of life donation was in 2013. I lost a friend to a traumatic brain injury. For days, hundreds of her friends gathered outside of the ICU. We took turns holding her hand and holding each other as she slipped away. I remember doctors asking her parents to confirm her donor status. A small group of us helped them complete the paperwork and fill in the blanks of her life they hadn’t been a part of since she moved away for college.  

I can’t pretend to know what it feels like to sign the papers to release a parent, spouse, or child to become a donor. But I do know what it feels like to hear the words “brain death.” I know how it is to look at someone you love breathing right before your eyes, yet knowing for certain that they are in fact no longer there. I know the hollow feeling of leaving the hospital after countless hours with no resolution. I know the pain of absence. And I know that the only thing that made me feel better about that loss was the knowledge that my friend’s death gave life and sight to others.  

I don’t know if the recipients of my friend’s organs ever reached out to her family. I would like to think that they did, but now that I am on their side of life donation, I find it hard to know what to say. I want to write a letter to my mom’s donor family. I want to share with them the wonderful experiences I’ve had with my family in the past year because my mom now breathes with their loved one’s lungs. But I don’t want my telling them about what we’ve gained to force them to think of all the moments that they have lost and missed out on.  

As I think about all that I want to tell the family of my mom’s donor, I weigh it all against the pain of grief I know they have felt in the past year. There is nothing fair about death, except that it comes for us all. Saying I am grateful for every day that I have had with my mom since her transplant will never mean that I am grateful for her donor’s death. One life is not worth more than another. 

I hope they know that and can see that their gift to us and their loss are not precisely the same thing. I will keep thinking about what I want to say — what I would want to hear if I was in their shoes. I hope that I find the words and that they are right, and good, and true. Until then, all I can really say is “thank you,” which will never really be enough. 

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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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.