The Emotional Path of Organ Donation: Supporting the Mental Health of Donor Families, Recipients, and Those in Waiting
This spring, at Southwest Transplant Alliance’s (STA) Celebration of Life, donor families gathered around the Tree of Remembrance, where each legacy leaf on the tree was etched with the name of someone who gave the gift of life. Surrounding the tree were photos and keepsakes that spoke louder than words, telling stories of lives defined by compassion, strength and selflessness.
Beyond the names and mementos lay something even more powerful—the shared experience that united every family in attendance. They gathered to honor all that donation encompasses, including the grief of loss, the pride in their loved one’s lifesaving gift, and the quiet strength it takes to carry that legacy forward. They acknowledged what often goes unseen: the emotional journey that donation demands.
In many cases, organ donation is told as a story of medical breakthroughs and lifesaving success. While these stories inspire, they can unintentionally overlook the emotional trials of those impacted. Donor families, transplant recipients and individuals awaiting transplantation frequently confront mental health struggles that extend beyond the hospital stay. STA is committed to giving equal weight to emotional healing, recognizing that healing of the heart and mind is an essential piece to the donation process.
For families of donors, the journey begins with grief. The loss of a loved one is devastating under any circumstances, but amidst intense and often unexpected grief, families are asked to make a decision that will affect multiple lives beyond their own. Some find peace in knowing their loved one’s donation can save numerous people. For others, the decision brings waves of confusion, guilt or uncertainty. Even when the choice is clear, the emotional aftermath is often complicated, a mixture of pride, sorrow, and the challenge of carrying on a legacy. Donor mom Lisa Robinson shared, “When facing the loss of a loved one, emotions can change from minute to minute — laughing one second, crying the next. Losing a child was something I never thought I could survive, but you realize you must go on. What I always try to remember is that my son made the selfless decision to save others through donation. On hard days, I stop to remember my sweet Caleb and those who received his gifts. I find comfort knowing his death made life possible for others.”
For transplant recipients, the emotional road can be as demanding as the physical one. While the transplant offers a second chance at life, it also ushers in a complex journey marked by strict medication regimens, frequent medical appointments and lingering uncertainty. Many recipients face feelings of survivor’s guilt, anxiety and identity shifts. As heart transplant recipient Alin Gragossian shared, “I’ve learned healing doesn’t stop after an ICU stay. Chronic illness challenges not only your organs but your identity, and it can be overwhelming psychologically. I’ve had moments where the physical pain was easier to manage than the mental weight of it all. Sometimes the mental weight is harder to bear than the physical pain.”
These emotional hurdles are not limited to donors and recipients. Patients on the waitlist often live with immense emotional strain as well. The uncertainty of when or whether a transplant will come introduces fear, depression and isolation. Waitlist patients navigate strict health regimens and constant medical monitoring, all while managing the heavy weight of not knowing what tomorrow will bring. Tim Sullivan, a patient on the waitlist, expressed it simply, “Sometimes I wonder if I’m worthy enough. After my cardiac arrest, I got a second chance at life. Now I’m asking for a third with a different heart. Sometimes you wonder, ‘Am I worth getting three chances at this?’”
Recognizing the critical role of mental health in the organ donation journey, STA has developed a comprehensive support model to meet the emotional needs of our communities. Through the dedicated efforts of the Donor Family Support Team, families receive care kits, personalized check-ins, and continued access to meaningful support resources following donation. Donor families also receive direct access to TaskHuman, the first real-time digital platform connecting users in real-time with vetted grief support and counseling professionals via video call.
To further foster healing and connection, STA hosts events and peer gatherings where donor families, transplant recipients, and others impacted by donation can connect, share their stories, and find comfort in community.
Eunice Mata, Donor Family Support Liaison, explains, “Working with donor families, both English and Spanish-speaking, I serve as a comforting resource after their loss. Grief can make even a single day hard to face, which is why we are dedicated to supporting families as long as they need. We connect donor families with recipients when the time is right and help facilitate events to honor their loved ones. It’s an honor to walk beside these courageous families and see their legacy live on.”
Although these resources support our community’s mental health, overall wellness requires a lifelong commitment, extending well beyond the immediate care of hospital staff. Leverage the following tips to help you care for your mental health at home:
Prioritize sleep – Aim for 7-8 hours of sleep each night. Getting a good night’s rest is crucial for mental well-being as it impacts emotions and cognitive function.
Try a relaxing activity – Whether it’s reading, gardening or painting, try an activity that soothes the mind and helps build a sense of purpose. Try to limit screens or doomscrolling, which can trigger your nervous system.
Move your body – Stretch. Take a walk around the block. Just 30 minutes of low-impact movement can boost moods and lower the body’s stress hormones.
Connect with others – Look for ways to deepen existing connections, whether that’s going out for a cup of coffee or taking a road trip to a nearby city with friends or loved ones. Or, find new connections by joining a book club, a volunteer group or group sport.
Navigating your mental health journey is a deeply personal process, and just like donation, everyone’s story looks different. STA encourages everyone to prioritize their mental health, seek support when needed, and treat it with the same importance as physical health—offering yourself grace and kindness along the way.