Cyclist riding across America for kidney disease awareness
Oct. 5—CUMBERLAND, Md. — A Pennsylvania man's dream of one day cycling across America took on new meaning in 2017 when he began experiencing symptoms of a rare kidney disease.
Will Kleemeier had known since 2004 he was a carrier of polycystic kidney disease, also known as PKD. Several of his extended family members had the life-threatening genetic condition that causes cysts to gradually envelope the kidneys, impairing the organs' ability to function.
"My health changed dramatically," he said. "I exhibited many PKD symptoms — rapidly declining kidney function, high blood pressure, side and back pain, headaches and increased abdomen size (known as PKD belly) due to enlarged kidneys, which are currently about five times the size of normal kidneys. Ultimately, patients end up on dialysis, have a kidney transplant or die of renal failure. And, there's a dramatic shortage of organ donors."
Kleemeier, 58, a father of three sons, decided he wouldn't take the incurable disease — one that an estimated 600,000 Americans currently have — lying down.
He began looking at his dream of a cross-country bike ride as a way to educate people on PKD and to raise money for a cure. From New Hope, a small town northeast of Philadelphia, he realized the ride could be used to provide hope.
"I always wanted to bike across the country," he said. "I felt it was a continuation of my story. My son Patrick has just graduated high school and he volunteered to be the support vehicle driver. That is why it came together this year and I'm still healthy enough to do the ride."
On June 17, Kleemeier set out from Seaside, Oregon, for his nearly 3,500-mile journey to Ocean City, New Jersey.
"When I first started I had to choose a direction. For me, family is very important so I chose traveling west to east ... biking toward home was much more of a motivator," he said.
Things went well until July 27 when he crashed in Chicago and broke his left elbow.
Undeterred, and after taking time for the injury to heal, Kleemeier resumed the ride east in Chicago on Sept. 25. His son Patrick started college, so his sister Carol became the support car driver.
Kleemeier arrived in Cumberland on Monday via the Great Allegheny Passage after putting in a 72-mile day.
"In 2004, at age 40, I was diagnosed with PKD after my mom informed us, her four children, that she had PKD," he said. "However, it wasn't until after my mother passed away in 2007 from end-stage kidney failure due to the disease that I learned my cousin had already had two kidney transplants, and an aunt and an uncle were both on kidney dialysis — all because of PKD. I felt good and thought I had another 25 to 30 years before needing to act, so I continued my life as if nothing was wrong."
Kleemeier, who said he has a 50% chance of passing the disease on to his children, said his mother chose to not pursue any life-extending treatments. "My mother passed away from it. She chose not to go on dialysis," he said. "Her dying words were, 'Please do something different because you have so much to live for. That is another reason I'm sharing it, because that was her dying wish.'"
Kleemeier said the bike ride has been an amazing experience.
"Besides the beauty, when you take the back roads you really get to meet the local people," he said. "You meet so many wonderful people."
"At a school in southeastern Ohio called Bellaire Middle School, a teacher contacted me and his class has been following my ride. They use it for a geography lesson. When I went through their town the kids showed up and gave me these wonderful cards. I will cherish these cards the rest of my life. The cards were signed, 'Love, from your support team.' Just that alone made the trip worth it," he said.
Kleemeier experiences pain every day from the disease, but he soldiers forward one pedal stroke at a time. "It's a hidden disease," said Kleemeier. "If you look at me, you wouldn't know I was sick."
Kleemeier can be tracked on his Facebook page, Pedaling for Kidney Disease, or the website pedalingforkidneydisease.org. There are links to the Polycystic Kidney Disease Foundation for people wishing to donate. According to his Facebook page, he has so far raised more than half of his $100,000 goal.
"Always work with your health care provider," said Kleemeier. "You can get checked with an ultrasound, so it is not evasive. Enjoy your life every day. You should live your life to your fullest."Greg Larry is a reporter at the Cumberland Times-News. To reach him, call 304-639-4951, email glarry@times-news.com and follow him on Twitter @GregLarryCTN.
Greg Larry is a reporter at the Cumberland Times-News. To reach him, call 304-639-4951, email glarry@times-news.com and follow him on Twitter @GregLarryCTN.
