Over the past week, I had the opportunity to be part of two experiences within the transplant community that, while different in setting, were deeply connected in purpose. Whether standing in a busy exhibit hall or speaking to clinicians and researchers, one thing became clear: connection and advocacy build upon one another.
Connection creates the space for stories to be shared, and advocacy ensures those stories are heard.
Where Connection Begins
On June 18th, I traveled to Denver for the Transplant Games of America, where I represented the TransplantLyfe community alongside my friend and colleague LaVise. From the very first day in the TGA Village, we were completely overwhelmed in the best possible way.
Patients, care partners, and family members continuously stopped by and shared their stories. Each interaction reinforced how powerful it is to simply listen.
I spoke with a woman who received her transplant in 1994 and has been coming to the Games for decades. When we talked about TransplantLyfe, she shared how meaningful it was to see something like this exist now. At the time of her transplant, there were no resources to connect, so she spent years building support groups herself. During our conversation, I could tell she had done so much for this community, as many people stopped by to give her a hug or a friendly pat on the back. I knew I was in the presence of someone who has made a lasting impact.
We also invited people to take a short survey about side effects, and so many were eager to participate. One man immediately stepped up and said, “Oh boy, do I,” joking about whether we’d have enough room to capture them all. There was humor in those moments, but also a deeper truth: side effects are a constant and often invisible part of daily life.
Those conversations stayed with me, especially knowing I would soon be speaking about these same challenges in a clinical setting.
Just before we wrapped up our first day, one attendee said: “Thank you for being here listening and for all the work that you do.” It was simple, but it underscored how meaningful it is to create space for people to feel heard.
Where Connection Becomes Advocacy
That sense of connection carried into my experience speaking at the American Transplant Congress on the hidden burden of transplant success.
Over the past nine years with my kidney transplant, I’ve come to understand that survival is only part of the story. As I sat on that stage, I wasn’t just sharing my own experience, I was carrying the voices and honesty I had just witnessed days before.
When it came time to speak, I shared my journey, including receiving a kidney from my mom, who gave me life not once, but twice. I spoke openly about living with side effects, tremors, additional medications, headaches, gastrointestinal issues, brain fog, and the uncertainty about the future.
As I looked out at the room, I felt encouraged by the willingness to listen. There was openness from clinicians about the burden patients carry and the need for better solutions.
One quote that stayed with me was: “Change is difficult, not changing is fatal.”
It reinforced how important it is to bring patient experiences into these conversations, because the stories shared in community spaces are the same ones that can shape the future of care. After the session, several practitioners came up to thank me for sharing my story. As patients, we often express gratitude; to have that gratitude reflected back was something I will never forget.
Connection and Advocacy, Together
Looking back, what stands out most is how these experiences come together.
The conversations in community spaces are not separate from those happening in clinical settings – they are the foundation.
Connection is where stories begin and advocacy is how those stories create change.
This week reinforced that when we listen, share, and carry those experiences forward, we create the potential for something bigger, not just for ourselves, but for the entire transplant community.
