Honoring National Donor Day with donor family perspectives

“It was July 9, 2021, at 9 a.m. NBC’s ‘Today’ show was on television in our house that morning. I was in my home office going through my morning routine while my wife, Susan, was downstairs in her home office.

“When my cellphone rang, I recognized the number as the transplant nurse coordinator’s, which was not unusual. Even though I had been listed for transplant for a little over three and a half months, I was caught off guard by her words that morning: ‘We have a lung offer for you.’”

These were the two lead paragraphs in a column I wrote last April to recognize National Donate Life Month. If I close my eyes, I can still hear those words and visualize the moment just as it occurred on that morning.

Today is both National Donor Day and Valentine’s Day. Both are associated with love. And it’s love that’s expressed in giving and receiving.

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Giving

I’d never presume to describe the emotions experienced by a donor family. Their gift has a value that can never be established by any traditional measure.

Pam Fultz-Masson’s late husband, Michael Keith Fultz, passed away in April 2016. Sheila Neely’s adult son Matthew Leo Bell passed away in July 2022. Both Michael and Matthew were organ donors. I asked Pam and Sheila two questions, and I’d like to share their responses.

I asked them to consider the following, which they answered by email:

SK: As a donor family, what is one thing you want a donor recipient to know?

PFM: Please be happy for this gift and live your life to the fullest! I’ve heard that some recipients feel guilty because someone “had to die” in order for them to get their transplant. Please know our loved one was going to die anyway. The fact that something positive could come out of this situation is a blessing for both of us (the donor family and the recipient and family).

SN: The decision to donate is a big one, and not made lightly. We go through so many emotions over time, wondering if it was all worth it. Sometimes we are full of joy that we were able to help someone, and other times full of remorse, like maybe it wasn’t the right decision.

When we put our emotions aside, though, it’s hard not to stand in awe of how amazing it is that organ donation is a possibility. We hope that you receive the gift that our loved one was able to offer with joy and thanksgiving and that you’re able to go through life blessing others because of it.

Do you want your donor recipient to reach out to you?

PFM: I’m always happy if a recipient wants to reach out! I’m always willing to share about my late husband so his recipients can know more about who gave them this gift. (Side note: We did get to connect with my late husband’s kidney recipient. [It was] such a joy to do that. His liver recipient has not wanted to connect, and we respect that. But we do write to him yearly through our local [organ procurement organization] just to let him know we think of him and pray he is doing well.)

SN: Yes! Our family would love to know who received a gift and find out how it has helped or changed their life. The gift of organ donation is a very emotional process for the donor family, and somehow, learning more helps us to feel that our loved one still lives on and is able to make an impact.

Receiving

I was diagnosed with idiopathic pulmonary fibrosis in January 2017. On July 10, 2021, I received a double-lung transplant at Inova Fairfax Hospital in Falls Church, Virginia. My new lungs are beautiful. I could not be more thankful for this bonus time, and I’m forever grateful to my donor and their family.

I have written my donor family. While I haven’t received a response, that’s not unusual. I was reminded by a friend that grief takes longer than joy. I remembered that thought when I was trying to decide on the appropriate time for my first letter.

I cannot imagine the challenges the family faced. I do write to let them know how I’m doing and how thankful I am for their gift of life.

Grateful

I’m grateful that Pam and Sheila shared their views for this column. I’m grateful for my bonus time. My donor’s gift and the gifts from Michael and Matthew have touched lives. On National Donor Day, acknowledging the impact of organ donors is how I can 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.