Meet Valen

Hi, I’m Valen!

I have a sincere zest for life, fight hard through my health challenges, love deeply, live fully, and approach each day with gratitude for the gift of life I’ve been given. I’m a passionate advocate for organ donation, polycystic kidney disease (PKD), chronic illness, and the power of second chances. My journey has been shaped by resilience, love, empathy, and a deep appreciation for the gift of life—and I strive to express my gratitude every day to my donors through action.

Welcome

Thank you for stopping by! I hope this site is a place of encouragement, insight, and hope—no matter what challenges you may be facing. You're not alone, and I’m so glad you’re here.

Living with Resilience: My Ongoing health journey

At age 10, I was diagnosed with polycystic kidney disease (PKD), a genetic disease that causes cysts to grow in the kidneys. This rare condition runs deep in my family—spanning six generations on my mother’s side. Tragically, most of our relatives passed away before the age of 53. My mom is the oldest living member of our family with PKD, now 69.

Upon diagnosis, I was told I would follow the same path. But my journey unfolded differently. I faced a childhood filled with hospital stays and cyst bleeds. By my teenage years, my health had declined significantly. At 18, I spent nearly a full year in the hospital—both kidneys were removed, I battled severe pancreatitis, received over 70 blood transfusions, and endured daily dialysis. I needed a kidney transplant to survive.

At 19, I received the gift of life—a kidney transplant from my incredible living donor, Sally, performed by renowned transplant surgeon Dr. Robert Montgomery. I have been so fortunate to have that same kidney for over 22 years.

But PKD didn’t stop there. In my 30s, it impacted my liver, leading to life-threatening complications. After years of recurrent sepsis and failed treatments, I was dual-listed for a liver transplant. At 35, my husband and I temporarily relocated to St. Louis, where I underwent a successful liver transplant at Barnes-Jewish Hospital. I’m now 6 years post-liver transplant.

Since childhood, I’ve undergone more than 30 surgeries, have over 70 inches of scars across my body, and manage multiple chronic conditions daily. Our family’s history with PKD, and my lived experience fuels my desire to educate, advocate, and uplift others facing similar challenges.

Advocacy and Giving Back

I sadly never met my grandmother, as she passed away from complications of PKD before I was born. However, I’m confident I inherited her joy for life and generous spirit - she, too, was a passionate advocate for our community. While on dialysis in the 1970s, she volunteered for the National Kidney Foundation. I’m grateful and honored to carry on her legacy of advocacy.

Over the past 20 years, I’ve dedicated my life to raising awareness about PKD, organ donation, and the importance of self-advocacy in healthcare. I’ve delivered over 200 talks across the U.S. and internationally and helped raise more than $1.5 million for PKD research.

Through over 250 blogs and articles, I’ve shared my journey to educate, connect, and empower the PKD, chronic illness, and transplant communities. I host Unpacking the Gift of Life, a podcast that creates space for honest conversations about living with rare kidney disease, emotional well-being, and the realities of chronic illness - encouraging the community to take charge of their health and live well alongside their challenges.

I also serve on several steering committees and patient advisory boards, collaborating with researchers, healthcare professionals, and pharmaceutical companies to improve patient outcomes and care. It’s an honor to ensure that lived experience plays a central role in shaping future care.

I believe that everyone deserves access to compassionate, effective care—and that we must keep pushing for better awareness, innovation, and support for those navigating chronic illness and transplant life.

Living with Chronic Illness: Empathy in Action

Having lived with multiple health issues since childhood, I deeply understand the physical, emotional, and social toll of chronic illness. In addition to PKD, I live with epilepsy, chronic pain due to scoliosis, and a history of bowel obstructions that require strict dietary needs—making my advocacy all the more personal.

I know the weight of the “waiting zone” before transplant, the isolation health challenges can bring, and the joys and complexities of life post-transplant. My mission is to ensure no one feels alone on their journey and to inspire others to advocate for themselves and lean into the power of community.

Celebrating Life and Continuing the Fight

Now, as a 42-year-old dual transplant recipient, I’m more driven than ever to live each day with passion, purpose, and positivity. My journey has been anything but easy—but it has been extraordinarily rewarding. Thanks to the unwavering love of my husband and support circle, I’ve learned that life—no matter how difficult—is worth fighting for.

I remain committed to increasing awareness of PKD, promoting organ donation, and supporting others navigating transplant and chronic illness. I encourage everyone to consider registering as an organ, eye, and tissue donor—there is no greater legacy than giving life.

Why I Advocate

Having witnessed firsthand how transformational organ donation can be for the recipient and every life they touch, I’m deeply committed to helping others understand its power. If my story resonates with you, I hope it encourages you to take action—whether through registering as a donor, exploring living donation, educating others, or simply spreading awareness.

The heart of why I advocate today is the same as it was 20 years ago: to be the role model I wish I had growing up, and to show others that a fulfilling, productive, and joyful life is possible after transplant.

Learn more about my Advocacy

• Podcast Host: Unpacking the Gift of Life – exploring chronic illness, rare kidney disease, emotional well-being, and the power of organ donation.

• Advisory Roles: Serve on multiple patient advisory boards and collaborate with pharmaceutical companies to enhance patient-centered healthcare.

• Speaking Engagements: Delivered over 200 talks across the U.S. and internationally on PKD, organ donation, and self-advocacy.

• Fundraising: Helped raise more than $1.5 million for PKD research.

• Media and Writing: Featured in national media, and authored 250+ articles and blogs to educate and empower others in the transplant and rare disease communities.