Tour DaVita 2013 is just a couple weeks away and we have a special announcement to share!
Riding among your fellow teammates, sponsors, friends and family you will find a special group of people who have been touched by kidney disease.
We are honored to announce that this year we have six dialysis patients joining us for the ride of a lifetime, as well as a former patient who received a kidney transplant this past January!
Keep an eye out for these riders on the road.
Unlike many people who “crash” into dialysis, unaware that they have kidney disease, Ray Hennings knew for many years that his kidneys were on borrowed time. Like his mother, sister and cousin, Ray has polycystic kidney disease (PKD) and has known since his mid-20s that kidney failure was a possibility. PKD is a kidney disorder passed down through families in which many cysts form in the kidneys, causing them to become enlarged. Now 59, Ray’s kidneys failed just over a year ago and he’s been on dialysis ever since. He is on the list for a kidney transplant, but knows that it could be two or three years before he makes it to the top of the list.
“I came into dialysis with my eyes open because of what my family has gone through,” said Ray. “I concentrate on taking things one day at a time. I can’t control when I’ll get a kidney, but there are things I can do every day, like cycling, to improve my health.”
Ray, who lives in Aloha, Oregon has a background in information technology and is completing his masters from Portland State University in Geographic Information Systems (GIS). He and his wife Lori, a natural resources scientist, share a love of the outdoors and Ray sees GIS as a way of bringing his technology work out into the open air.
Ray is a dedicated cyclist; the 220-mile bike ride doesn’t faze him. He’s been cycling for 25 years and in that time has done ten double centuries (200 mile/day rides) and ridden the week-long Cycle Oregon 19 times. He’ll be riding in South Carolina with a friend from Connecticut, Tom Rasmussen, who has done the Tour for the last three years and encouraged Ray to participate.
“If I’m able to inspire or educate others on dialysis about what’s possible, I’ll feel like I’ve made an impact,” said Ray.
Tour DaVita welcomes back Thomas Holmes for his second ride this year. As past riders will attest, you’ll be able to spot Thomas because of the big smile on his face. He says that the love and support of the Village gave him a reason to smile.
“I was charged up for a whole month following Tour DaVita last year. I couldn’t stop talking about it,” said Thomas. “I became the unofficial ambassador for home hemodialysis and the Tour.”
It sounds like his ambassador skills paid off, Thomas will be joined by his uncle for this year’s ride in South Carolina. The two have been training together in Michigan along with Thomas’s dachshund, Brownie. Thomas has been riding his mountain bike between 15 and nearly 30 miles to train.
Thomas has always been active, playing football in his youth and running marathons as an adult. He has participated in five marathons to date. Even after Thomas learned that he needed dialysis, he didn’t give up on his active lifestyle. Thomas attributes his ability to remain active partly to the fact that he does home dialysis.
Alphonso Jefferson calls himself “just a country boy,” but he’s developed a strong sense of purpose and compassion during the many years he has spent on dialysis. Alphonso, who is now 39, joined the Army as a young man and experienced kidney failure while still in the service. He received a medical discharge and by 1997 he was a 23-year old in the Veterans Administration hospital with much older vets wondering what was going to happen next. Alphonso has been on dialysis for 16 years now; he started in-center hemodialysis before trying peritoneal dialysis and finally landing on home dialysis. He uses a NxStage machine for his treatment.
By his own account Alphonso went through a very difficult time as a young man dealing with the consequences of dialysis and had to work through depression and despair to find the strength within himself to move forward. Today Alphonso is a real estate agent in Virginia Beach, Virginia where he lives with his wife Jackie and two-year-old son Preston.
Last year was Alphonso’s first Tour DaVita ride and he is looking forward to number two.
“I really enjoy stopping at the dialysis clinics and letting people see it’s not a death sentence – that you can get out and live your life in a full and complete way,” said Alphonso. “I remember how it was for me and wish that I had someone back then who could point the way. It’s a simple thing, but I think it is important. If you can beat the mental aspects, the physical is nothing. I don’t consider myself special. You can let dialysis define you or make it just another thing in your life. You can beat it.”
Jan Morrow is the first woman patient rider on the Tour. But this isn’t her first ride.
The 56 year-old lives in Virginia Beach, Virginia. Jan grew up on a farm and is an energetic lover of the outdoors who is at home with endurance events. She has run several marathons and even though she had three surgeries in four days earlier this year, is currently training for both the Tour and the Outer Banks Marathon, which takes place in November.
In April she joined thousands of women in crazy costumes for the “Dirty Girl” – a muddy, 5K obstacle course fundraiser for breast cancer research.
“It was great! I’m happiest when I’m dirty and sweating,” said Jan.
Jan is a patient at the same DaVita dialysis center as fellow rider Alphonso Jefferson, where she is also a home dialysis patient. Mandy Votaw, a technician at the clinic, and Savannah Tapp-Crump, a nurse there, who encouraged Jan to join the Tour, will also be riding this year.
Jan and her husband Bill have two children and three grandchildren. She was a secondary school teacher for the deaf and hard-of-hearing in Norfolk for 30 years where her responsibilities included overseeing the varsity cheerleading team. She notes that several of her deaf students were cheerleaders during her time with the team.
Kidney failure hit Jan suddenly in 2008 as a result of amyloidosis – a blood disorder in which insoluble protein cells accumulate in tissues and organs throughout the body. For Jan, the amyloidosis was in her kidneys.
“Almost overnight, I was on dialysis,” said Jan. “I had never been sick a day in my life.”
Jan makes it clear that her illness was a blow, but it’s clear that she doesn’t let it slow her down.
Jan, who is looking forward to the Tour despite the challenges posed by the surgeries earlier this year, likes the independence and freedom that cycling gives.
“I don’t have anything else but me and my bike,” said Jan. “It’s all you – you don’t have to depend on anyone else.”
At 74, Bill Porter may be the oldest rider on the Tour as well as one of the most enthusiastic. Bill did the Tour last year in Iowa so he knows the ropes and is looking forward to the ride again this year. He’ll be riding in South Carolina with one of his regular riding partners – dietitian Sudi Erfanfar from the local DaVita center in Richmond, Texas.
Bill lost one kidney to cancer in 2001, now the other one has been failing and he’s been on dialysis since January 2011.
“I ride because my doctor told me I had to get my butt off of the couch and get some exercise,” said Bill.
Bill and his wife Marcia have four children, four grandchildren and one great-grandchild. He had a long career in the brewing industry for familiar brands like Pabst and Miller. After he “retired” in 1992, he took his career international and spent four years in China establishing a franchise program for Lone Star Beer. He is past president and still attends regular meetings of the Texas District Masters Brewers Association.
Since May 2011 Bill has ridden more than 11,000 miles on his 1972 Schwinn Paramount. His blood work labs are all in the normal range and he says that he has never felt better.
“Four hours three times a week for dialysis is a bit of a downer, but what the heck, it beats the alternative,” said Bill.
Bill laughs when asked whether he’s taking the Schwinn to South Carolina for the Tour. He says that the bikes provided by Backroads are at a whole different level and that he’s happy to have the chance to ride a high-end bike.
For training, he tries to do 22-mile ride every day starting at 7 a.m.
“There are several of us old men riding and on Sunday we are joined by Sudi from the clinic. We call ourselves the ‘Richmond Renal Riders’ after the city where we ride,” said Bill.
When the seventh Annual Tour DaVita kicks off in South Carolina on September 14, Matthew Purvis will be riding in his fourth Tour. A serious and seriously fit cyclist who typically puts in two hours on his bike each day, Matthew is recovering from two surgeries earlier this year, but thinks he’ll be ready to go in September.
Matthew was the first dialysis patient rider four years ago and has been an inspiration to the entire Tour team and his fellow riders since that time.
Matthew is a 29 year-old from Pensacola, Florida. He’s pleased that the Tour is coming to the Southeast this year where the weather will be warm and a little humid as it is at home.
According to Matthew, “I don’t want to be known as a patient rider – I expect to be right up there at the front of the pack by the end of the day.”
But as much as Matthew loves to ride, he says it’s the companionship of his fellow riders and the visits to the dialysis clinics along the route that make the experience most meaningful to him.
“I’ve met so many wonderful people over the past four years and I feel especially close to friends who’ve been on the ride every year,” said Matthew. “I’ll be riding this year for my friend David Peterson, who lost his wife Tony earlier this year.”
Matthew suffered kidney failure as a child, but received a kidney transplant when he was six. The transplanted kidney, which came from his dad, lasted almost 15 years; he has been on dialysis since November 2006 as he waits on a list for a new kidney.
Matthew doesn’t think that the fact that he is on dialysis makes his athletic achievements that far out of the ordinary.
As he said in an interview after his first Tour, “Dialysis is supposed to give you life, not take it away,” he said.
“Dialysis does pose many challenges and I’m one of the lucky ones to be in good health, but I want to encourage others to get out there and live healthy, active lives,” said Matthew.
Ohio resident Mark Richardson is not returning to ride this year’s Tour DaVita as a dialysis patient… he is riding this year as a transplant recipient! Mark received a kidney transplant on New Year’s Day this year.
While waiting on the transplant list for a kidney he said, “I feel like I need to stay in shape for that kidney because that person is making a sacrifice for me.”
South Carolina will be the 46-year-old’s third ride and he could not be more excited to join the Village again for this event.
Mark has said that his experience on dialysis gave him a new positive outlook on life and Tour DaVita has inspired him so much that he is considering a career as a patient care technician.
Mark now spends his days sailing with friends and walking his dog Rogan as well as taking care of some friends’ pets. He continues to ride his bike just about anywhere he goes.
Mark also volunteers at Kappa Kidney Camp in Ohio, something he has done for the past four years. The camp is for children age 8-18 with kidney failure. Mark spends a week with the kids each summer playing video games and swimming among other outdoor activities.
“This year was amazing because it was after my operation and I had more energy,” said Mark. “I felt like super-counselor.”
Training for Tour DaVita comes naturally for Mark, who has enjoyed riding his bike since he was a young kid. Even when he was on dialysis, Mark stayed dedicated to being active because he knew he would benefit physically and mentally from the time spent outdoors with friends.
“The universe gives you a path and you can’t change it, you have to walk it,” said Mark. “I try to walk it with as much grace as I can.”
*Rider bios compiled by Carl Whitaker of The Kidney TRUST and Bianca Violante of DaVita