Valen’s Story

I first learned of polycystic kidney disease (PKD) when I was diagnosed with it 21 years ago at the age of 10. I knew that PKD affected everyone on my mom’s side of the family—she is the oldest to survive, still vibrant at age 56. Her mother was the second oldest, passing away at age 53, before I was born. Doctors told me that my disease would follow the same progression as theirs, not manifesting itself until I was in my late forties or early fifties.

Back then, I believed that, and I hoped it would be true. Back then, as a 10-year-old with sky-high blood pressure (160/140!), I never fathomed that, within a few years, my kidneys would become so polluted with fluid-filled cysts that they would be larger than footballs and need to be removed. Back then I couldn’t know that my future would include peeing blood and having such excruciating pain in my kidneys from cyst bleeds that I would be on a constant IV morphine drip during eleven months in the hospital. Back then I was too young to grasp that for seven months I would rely on a dialysis machine to filter my blood and keep me alive—the only treatment known for PKD besides transplantation.

Back then I didn’t believe I would ever have second thoughts about being a mom myself, but now I live in fear of the 50 percent chance I have of passing PKD on to my future children and watching them endure what I have endured.

And PKD was hardly my only health challenge. From age five, I battled through seizures, scoliosis surgery, pancreatitis, a congenital anomaly, and more than 70 blood transfusions. My PKD was always there, flaring up, backing down, and flaring up again, until finally I won the war—on August 13, 2002, I received a life-saving kidney transplant.

Throughout all my struggles, my one constant was a determination to make it through, to beat seemingly insurmountable odds, and to live every day of my life with purpose. Helen Keller said, “Although the world is full of suffering, it is also full of the overcoming of it!” As a child, I could never have imagined that having one of the most common life-threatening genetic diseases—PKD affects 600,000 Americans and 12.5 million people worldwide—would be the platform I now use to help others.

Today I am a 31-year-old woman with a passion to educate and inspire. My threefold mission is to increase the public’s understanding of the importance of research into kidney disease, to help spread awareness of PKD, and to promote organ donation. Prior to my move to Auburn, California, I founded the South Central Pennsylvania chapter of the PKD Foundation, and organized numerous PKD fundraising walks and educational seminars. As an experienced public speaker, I share my message of hope through my award-winning biography, My Favorite American, to audiences throughout North America.

I am proud to have earned many accolades and awards, including:

• Being selected as one of the 12 Inspiring Women of “20 Million in 2012” by Donate Life America, 2012
• Appointed a national spokesperson for UKRO, 2011

• Selected as winner of nationwide 2011 Astellas “Ride of a Lifetime” Rose Parade Contest, 2010

• Recipient of the Susan P. Byrnes Health Education Center “Celebration of Life Award,” 2009

• Selected as the “Smart Woman” for Smart Magazine, 2009

• Recipient of the first-ever “Helene Kenigsberg Award for Excellence in Public Awareness of Polycystic Kidney Disease” from the PKD Foundation of Canada. This award was established in 2009 and is the only award of its kind, honoring individuals who have made an outstanding contribution in creating public awareness of PKD on a national level.

• Subject of award-winning biography, My Favorite American, by Dennis McCloskey, 2008

• Recipient of the following Dale Carnegie Course Awards: Human Relations, Human Relations Champion, Outstanding Performance, and Highest Award for Achievement, 2008

• Campaign Chair for the PKD Foundation’s “Campaign for a Cure,” raising over $1,000,000, 2005–2006

• Nominated for, received the most votes in a nationwide contest, and named the first-ever DaVita “Kidney Idol,” 2005

• Chapter and Walk Coordinator for the South Central Pennsylvania Chapter of the PKD Foundation, raising more than $100,000, 2004–2007

• Founder of the South Central Pennsylvania Chapter of the PKD Foundation, 2004

Because so many members of my family grapple with PKD, or have died from it, I have developed a strong connection with those who endure the pain and suffering caused by every form of kidney ailment. I strive to live every day positively and demonstrate that one can live a fulfilling life post-transplant and while having an incurable disease.

I believe I am alive today to use my story for the benefit of others. My mission is to dedicate my life and contribute all I can to help those fighting kidney disease, in hopes they will not have to go through the same trials I have. My life showcases the vital need for research to put an end to kidney disease.

Research gives us hope—hope for more treatments, hope for a cure, and hope for a long and happy life despite living with kidney disease.

Thank you for taking the time to read about my journey thus far. I believe in UKRO with all my heart and hope you will join me in supporting this amazing organization by donating to its research and helping to create a bright future for so many.

Please visit Valen Keefer’s biographer’s website at www.dennismccloskey.com to learn more about her triumph over adversity. You can read her blog at www.pkdwillnotbeatme.com.