For millions of Americans born with congenital heart disease, survival was once measured in milestones: making it to elementary school, high school, or adulthood. And every year, about 40,000 babies in the U.S. are born with a heart defect. Sixty-two years ago, I was one of those babies. Doctors told my parents I might never live long enough to go to school, get married, or have children.
Today, medical innovation is rewriting those odds and helped me reach each of those milestones. But my experience also revealed a challenge that innovation still needs to address: expanding who can receive a donated organ.
When I was three years old, I became the first child in Nebraska and the third in the country to receive a pacemaker, a device that helps keep the heart beating in rhythm. Over the decades, I benefited as those devices became smaller and more sophisticated.
That progress gave me additional years and the chance to build a life. I graduated from college, spent more than 30 years working in education, got married, raised two daughters and became a grandmother.
In many ways, I have spent my life experiencing how science and medicine make that future possible. Over the decades, I have seen treatments that would have seemed unimaginable when I was a little girl, become part of modern care.
Cardiac care has always been a part of my story. After 10 pacemakers and more than 30 surgeries, congenital heart disease caught up with me. Walking up and down stairs became exhausting, keeping up with students became harder and I was constantly out of breath. Eventually, my doctors shared that my heart was failing.
This was the first time that I truly felt mortal. I needed a new heart.
Joining the organ transplant waitlist meant entering a world of uncertainty that is difficult to understand until you are living in it. More than 109,000 Americans are currently waiting for an organ transplant. For patients waiting for a heart, factors such as antibodies and blood type limit suitable matches, while geography can put those matches out of reach. In my case, I matched only 4 to 6 percent of available donor hearts.
Still, I had spent my entire life defying the odds, and I was determined to do it again. As the wait continued, my hope began to fade. Then my medical team approached me with another possibility. Participating in a clinical trial studying a new way to preserve and transport donor hearts for longer periods of time outside the body.
Time has always been one of the greatest challenges in heart transplantation. A donated heart remains viable outside the body for a limited period, which restricts how far it can travel and, in turn, which patients can receive it. For someone like me, with few suitable matches, extending that window could mean access to a heart that would otherwise be too far away.
The clinical trial I joined was studying XVIVO Heart Assist Transport, a technology designed to preserve a donor heart in a controlled, cold environment while continuously supplying it with oxygen and nutrients during transport. This mimics the body’s internal environment. The trial was evaluating whether the technology could extend the amount of time a heart can be outside of the body, which would ultimately give transplant teams greater flexibility in transporting donor organs across longer distances.
For people like me, eliminating those barriers mattered immensely. Before long, my surgeon found a match, and I received a new heart on Halloween in 2024.
Every day, I am humbled to have another chance at life. But my second chance came from an unimaginable loss for another family, and that is something I will never take lightly.
As I celebrate two healthy, happy years with my new heart, I’m thinking about the woman who made that possible. This summer, I met my donor’s eldest daughter and learned more about her mother: a nurse and mother of five who was strong, hardworking and deeply loved. Learning about her life made my gratitude more personal. My second chance is forever connected to her and the family who loved her.
That is why medical innovation must keep moving forward.
If researchers, physicians, patients, medical technology companies and regulators had decided the status quo was good enough, my life and millions of others would look very different. The pacemaker that kept me alive as a child was once a new technology. So were many of the treatments and devices that carried me through adulthood. Then, decades later, I once again benefited from doctors and researchers willing to study a new approach to heart transplantation.
As a nation, we owe it to patients and donor families to strengthen the organ transplant system. Every donated organ represents an extraordinary gift. Advancements in technology can help more of those gifts reach patients in time to save their lives.
That means continuing to invest in research and clinical trials and ensuring that the FDA has the resources and pathways to evaluate promising lifesaving technologies. Safety must always come first, but urgency matters too when patients are living on borrowed time. Technologies that could help preserve donated organs, overcome barriers of time and distance, or allow more patients to receive a transplant deserve careful study and, when shown to be safe and effective, a path to the patients who need them.
I am here because generation after generation, people kept asking how medicine could do better. For the patients still waiting for their own second chance, we must keep asking that question and investing in the answers.