Californian Valen Keefer, 37, has always been unique. She is affable, optimistic, and shares her life story with hundreds, maybe thousands, of people, way more than most people do. When she was a kid, she didn't know any other kids like her – a 10-year-old battling an inherited and dangerous kidney disease or any who spent nearly a year in the hospital.
But even in a family that included many patients with polycystic kidney disease (PKD), Valen stood out with unprecedented symptoms and complications. Even among other cases of PKD, she broke the mold. Between the ages of 18 and 19, she had more than 70 blood transfusions in order to treat bleeding ruptures of cysts on her kidneys. By the end of that year, her doctors made the difficult decision to remove her functioning kidneys to prevent further bleeds. At 19, she received a kidney transplant from a family friend, who stepped up to donate a miracle that pulled her from the brink.
Not one of her aunts and uncles, not her mother or brother, or her grandmother, who all inherited the same disease, had to endure the same kind of symptoms in childhood as Valen. Hers were unique in her family and among other patients.
Miracle of transplant
Nevertheless, Valen believed that after the miracle of transplant, she was on the path to a more traditional life. But the disease caused her more problems. Her liver was damaged due to a unique malformation that caused infections, which led to the need for a new liver. Valen was saved when she received a liver transplant from a deceased donor.
Valen Keefer (right) and her kidney donor celebrate their transplant anniversary
"I have never met another person who had their kidneys removed when those organs were working 60 percent and needed a kidney transplant because their cysts would not stop bleeding, or a person who needed a liver transplant because of the issues that I had," Valen said.
"To think that all of these unique manifestations occurred in the most common form of PKD shows that I can't be the only one experiencing these life-threatening complications and it underscores the vital need for my story to be shared for patients and the medical community to learn from," she said.
Patient to patient
Valen also wants other patients to know they can get through the challenges of PKD. Valen shares her message and life story with her fellow patients:
- "I would like them to know there is hope."
- "Kidney disease and post-transplant patients can live a joyful, productive and fulfilling life."
- "I would like all patients to know how resilient our bodies and minds can be."
- "Healing is not linear and at times can be a long process. Be kind to yourself through it all. Mental wellness and self-love/acceptance is so important."
- "I would like them to know they are not alone."
Valen now advocates for other patients, raises funds for kidney disease, is a motivational speaker who has spoken before groups more than a hundred times, and blogs on her own website filled with inspiration about her journey with PKD. She has made many television appearances to spread the word about PKD and she shares her life as an example for others. She shares her story and time with a dozen organizations, including the National Kidney Foundation.
Until recently after her mother dug up some old photos, Valen had always believed no one in her family shared her devotion to volunteering in the world of kidney health. It turns out she was wrong. Her grandmother, who died at age 53 of PKD and before Valen was born, also shared her own kidney disease with others and gave her time volunteering, just like Valen. Her grandmother served others despite enduring the rigors and complications from her illness.
Valen's maternal grandmother (left) volunteers for NKF
"I have the passion for volunteering like my grandmother had," Valen said. "I believe it takes a special heart and a compassionate person with empathy to be able to be a volunteer and share what they have endured over and over again and connect with and help others. I believe my grandmother had that spirit and that is who I got it from."