Walking the Transplant Journey Again - with Hope & Perspective
My name is Jeanmarie, and I’ve been living with chronic kidney disease for most of my life. I was diagnosed with Lupus Nephritis at 16 (1996), and I am now a two-time kidney transplant recipient. I received my first kidney transplant from my dad, a living donor, in 2006. His kidney sustained me for nearly 20 years. I received my second transplant on September 19. Navigating this journey again has shown me just how complex and overwhelming this path can be.
Along the way, I’ve become deeply committed to supporting others with CKD and transplant. I truly enjoy helping patients make sense of the medical system, ask the right questions, and feel less alone as they move through dialysis, transplant evaluation, and transplant. Encouraging patients to pursue transplant evaluation is one of the most meaningful parts of mentoring, especially when it helps them feel supported, informed, and not alone. I also care deeply about promoting realistic, kidney-friendly eating habits and using simple tools like AI to help with grocery lists and recipes on days when fatigue or appointments make meal planning feel overwhelming.
I’m also an active advocate for organ donation through our local OPO, Lifesharing, where I teach medical professionals, high school students, and first responders about organ donation and help dispel common myths. This past summer, I felt compelled to speak up after a New York Times story led many registered organ donors to remove themselves from the donor registry. Seeing that happen was heartbreaking. The story focused on a single, sensationalized narrative and left out important context, and I knew the impact of that kind of language could be harmful. I wrote a response to bring a patient perspective to the conversation, and while I did not expect much to come of it, my letter to the editor was published. It reinforced for me just how powerful words are and how important lived experience is to these conversations.
Being part of ReMend allows me to bring together lived experience, advocacy, and peer support. I’m honored to walk alongside others as they navigate this journey, one step at a time.
