When Valen Keefer started college, she wanted to be a teacher. Polycystic kidney disease (PKD) derailed her plans, causing a year of hospital stays and such severe symptoms that her kidneys had to be removed. She was on daily hemodialysis. A kidney transplant at age 19 restored her health, and now she teaches other kidney patients by sharing her story. “It’s my passion and purpose,” she said. “I feel like there’s a reason why I battled through so much.”
Valen was diagnosed with PKD as a child. “My mom was there with me at the doctor’s office and she knew what it probably was,” Valen said. “It runs in my mom’s family, and she had it herself.” PKD is one of the most common life-threatening genetic diseases and is the fourth leading cause of kidney failure. Valen was the first in her family to have such extreme symptoms and the first and youngest in her family to get a transplant.
“When I was in high school, I didn’t know anyone else with PKD, and I didn’t have a support group,” she said. “I was fortunate I had my parents. I knew I was loved and they were fighting by my side. I do advocacy to help people know they are not alone and that there are resources to help them.”
It’s been almost 13 years since her kidney transplant. Valen still has health issues related to PKD, but she works hard to stay healthy and enjoy life. An active advocate, she has shared her story at 80 events around North America, and blogs for the PKD Foundation at http://pkdwillnotbeatme.com. She is a Donate Life ambassador and a spokesperson for UKRO, University Kidney Research Organization, and the subject of a biography, My Favorite American, by Dennis McCloskey.
“My PKD stands for positivity, knowledge and determination,” she said. “I believe our bodies follow a positive frame of mind. It’s important to let your emotions out, and then get back on track. Knowledge is so important. I keep a list of questions, and then I ask my nephrologist when I see him. I leave with more knowledge, and I feel like I’m taking care of my kidney the best I can, to keep it healthy as long as possible. Determination—you have to want a good life. You’re not going to feel great every day, but you have to keep moving forward every day.”
“I wanted to be a teacher,” Valen said. “Now my husband says, ‘You ARE a teacher!”
#TogetherWeCan is a continuing series of stories from kidney patients and care partners, sharing their experiences and insights.