This Thing Called Life

EP 127: "Legacy in Life and Loss: Adria Johnson on Her Son’s Gift of Hope"

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Title: "Legacy in Life and Loss: Adria Johnson on Her Son’s Gift of Hope"

 

🎙️ Episode Summary

In this powerful and emotional episode of This Thing Called Life, we sit down with Adria Johnson, President and CEO of Metro United Way in Louisville, Kentucky, as she shares the deeply personal story of losing her son, KJ, in a tragic car accident. KJ made the selfless decision to become an organ donor — a choice that gave the gift of life to others even in his passing.

Joined by Barry Massa, CEO for Network for Hope, this episode also sheds light on the critical difference between DCD (Donation after Circulatory Death) and brain death, offering clarity and compassion for families navigating organ donation.

Together, Adria and Barry bring heart, hope, and understanding to a conversation that touches every aspect of life, love, and legacy. 

 

✨ Episode Highlights

  1. Guests introduced: Host Andi Johnson welcomes Barry Massa and Adria Johnson, who share their experiences with organ donation.

  2. Adria’s story: She recounts losing her son, KJ, in a car accident and the remarkable impact of his donation — his heart saved a 36-year-old man, and his kidneys gave two mothers renewed life.

  3. Barry’s perspective: He reflects on how KJ’s story fuels his passion for the mission of organ donation and inspires his work every day.

  4. Support from COTA: Adria and her family received compassionate care from the Children’s Organ Transplant Association, which walked alongside them during the most difficult moments.

  5. KJ’s decision: Paperwork revealed that at just 18 years old, KJ had already elected to be an organ donor, a decision that turned his loss into hope for others.

  6. The Honor Walk: KJ’s hospital held a moving ceremony to honor his life and gift of donation, a moment that deeply touched his family.

  7. Hospital partnerships: Barry stresses the critical role of strong hospital relationships in ensuring organ donation success.

  8. Understanding donation: The episode clearly explains the difference between brain death and DCD. Brain death occurs when all brain function ceases, while DCD is donation after the heart stops — both allowing for organ donation under specific conditions.

  9. Family acceptance: Adria shares how she fully supported her son’s decision, finding comfort in his selflessness.

  10. Aftercare support: Network for Hope’s Aftercare department provided Adria’s family with ongoing emotional and memorial support, helping them through grief and connection with recipients.

  11. Organizational challenges: Barry speaks about recent challenges in the field, including investigations, corrective action plans, and congressional hearings around organ procurement modernization.

  12. Medical recommendations: HRSA guidance calls for neuro exams every 12 hours for DCD cases to ensure accurate assessment.

    13.  

    📝 Key Takeaways

    1. The power of one decision: At only 18 years old, KJ’s choice to register as an organ donor transformed his tragic passing into a legacy of life, saving and improving the lives of multiple recipients.

    2. Compassion and support matter: From COTA’s care to Network for Hope’s Aftercare team, Adria’s family experienced how vital emotional and practical support is for donor families navigating both loss and healing.

    3. Education brings clarity and courage: Understanding the differences between brain death and DCD helps families make informed decisions, reduces fear, and fosters greater trust in the organ donation process.

      4.  

      📢 Tweetable Quotes

      “You know, it was hard enough to prepare to say goodbye to my son and know that KJ would no longer be here, but he had elected at the age of 18 to be an organ donor, unbeknownst to us, and certainly, I consider him probably the premier selfless hero that I will know in my lifetime because of that gift.” 

      • Adria Johnson

        •  

        “You know, it really takes a lot of dedication, and if you're just in it for a job, you'll never make it. You have to be passionate about the mission.”

        • Barry Massa

          •  

          “And when that decision was made, what I really appreciated was, again, just the tenderness, the comprehensive way in which they prepared us for all of it, you know, just what needed to take place for the duration of K J's hospital stay.”

          • Adria Johnson

            •  

            “And very early on in when I became Executive Director of Life Center, before becoming CEO of Network for Hope, I felt like relationships with their hospitals were going to be the key for our success to honor those gifts of donation.”

            • Barry Massa

              •  

              “ I didn't have any reservations, like I said, from the minute all of this started for us, and even just in being made aware that you know your son did elect to be an organ donor, and if you know that is something you all want to pursue.”

              • Adria Johnson

                •  

                “I mean, from the minute we had to get through all of that painful episode, and you're now kind of adjusting to life without this person, it was. I mean, just consistent check-ins:

                 ‘How is your family doing?’ I mean, even the you know, helping us in terms of, ‘do you want to try and have some connectivity with the folks that have been the recipients of his gifts?’ So there's all of that also added an element of support. “

                • Adria Johnson on receiving support from the AfterCare Team




                  • Resources:

                  Donatelifeky.org

                  https://getoffthelist.org/

                  https://www.networkforhope.org/

                  https://www.networkforhope.org/about-us/

                  https://www.networkforhope.org/stories-of-hope/

                  https://www.facebook.com/NetworkForHopeOPO

                  https://www.youtube.com/@NetworkforHope.

                  https://aopo.org/

                  RegisterMe.org/NetworkforHope

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