Kidney disease doesn't stop Grand Blanc swimmer

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Kidney disease doesn't stop Grand Blanc swimmer

Posted by Julia Zaher | The Grand Blanc News April 24, 2008 11:29AM

GRAND BLANC TOWNSHIP, Michigan -- Like most competitive swimmers, Robby Rariden shaves his body to reduce water resistance. Like his teammates, he logged a grueling 40,000 yards in the pool each week during swim season. And he did goofy things like dye his hair blue to build team spirit.

Robby, 15, never wanted to be singled out from the rest of Grand Blanc High School's varsity swim team. But it wasn't up to him.

In February, the freshman earned a varsity letter after competing in the 100-meter butterfly at Genesee County's Big Nine Swimming/Diving Championships. He did it even though his kidneys were failing, even though doctors were watching closely, calculating how far they could prolong surgery to insert a catheter in his abdomen so Robby could begin dialysis at home.

"I put all the things that were going wrong with me aside and just focused on finishing the swim season," said Robby.

That accomplishment took not only physical strength but also strength of will.

"He never complained once," said varsity swim coach Matt Pearce. "He got out of the pool about once a practice, would go over to a trash can and get sick."

Then he'd get back in and keep swimming. Most of Robby's teammates, their faces in the water, didn't even notice the routine interruption.

Robby suffers from Alport syndrome, a genetic disease inherited from his mother, Shelly. Victims of the uncommon disease suffer progressive kidney damage because their kidneys lack a needed protein and fail to filter toxins.

In girls, symptoms are milder and may not appear until adulthood. Robby's sister Amy, a college student, has it and is healthy. But 80 percent of boys with Alport syndrome experience significant irreversible hearing loss. High blood pressure is common. By the time they are teens, many have kidney failure.

Robby began losing his hearing when he was 9 and is 50 percent deaf. He uses hearing aids, which he takes out while swimming, but says sometimes he doesn't hear his coaches.

While he has long been under the care of a specialist, it wasn't until about last October that the disease began to manifest itself critically.

"I was falling asleep at school. I would throw up," Robby said.

Swim practices started in late November. Robby's parents, Terry and Shelly Rariden of Grand Blanc Township, alerted Pearce of their son's condition before the swim season began, confident in their son's ability to compete.

Pearce admitted he was nervous at the start of the season but trusted Robby to listen to his body.

"I tried to treat Robby the way I treated every other kid," Pearce said. "There were no special favors."

As the season progressed, so did Robby's illness. He went from being treated at Flint's Hurley Medical Center to Children's Hospital of Michigan in Detroit. His physician, Dr. Rudolph Valentini, specializes in pediatric kidney disease.

"He had kidney function that was about 20 percent of normal, but he was determined to participate in sports," Valentini said.

Near the end of the season, it became obvious Robby needed to be on dialysis.

Valentini chose peritoneal dialysis which is done at home with a machine. But before dialysis could begin, Robby needed surgery to insert a catheter into his abdominal cavity. It was late February, and the county swim championship was on the horizon.

Instead of fitting swimming into dialysis, Valentini said, "He wanted to fit dialysis into his swim schedule."

Amazingly, Robby managed to finish the season and earn his varsity letter at the championship meet Feb. 23 before heading to Children's Hospital two days later for surgery. He was in the hospital for three days and came home, but a severe drop in kidney function sent him back to the hospital for another week.

His parents turned a spare bedroom into a storage room for the boxes of supplies needed for his dialysis. Robby's bedroom is equipped with a small refrigerator, recliner, television and Xbox game.

Every day from 9 p.m. to 6 a.m., Robby is hooked up to the dialysis machine that cleans his blood. He also takes 18 medications and monitors his diet carefully to avoid excessive sodium.

Pearce and team president Mike Bleau, whose son is on the swim team, began to discuss Robby's accomplishments and his indomitable spirit.

"I probably wouldn't have swam if I was him," Pearce said.

They decided to create a perpetual award in his honor -- the Robby Rariden Character Award -- to be given annually to a swimmer who has "the rare qualities demonstrated by Robby Rariden," the plaque says. It was a surprise at the team's annual banquet held March 13.

The plaque says, "Facing obstacles that could have caused others to turn away, Robby challenged himself to achieve. His determination, work ethic and humble nature have been an inspiration and a measure of character that we should all aspire to achieve."

"It was really nice," Robby said. "I didn't know that people saw me like that."

Robby credits his coaches saying, "Somehow they comforted me. They made it so I was comfortable swimming."

His dad, Terry, credits his son's character.

"He has the will and determination to do anything," he said.

Two weeks after surgery to insert the abdominal catheter, Robby went to try out for the baseball team. He was weak, so the coaches gave him two more weeks to gain his strength before an official tryout.

"He wanted to play so bad and be a normal kid," said freshman baseball coach Xavier Whitacre. "It was just incredible."

His doctor said the only thing Robby can't do is slide. Playing catcher was also out.
Doctors have cleared Robby for a kidney transplant, and the search is on for a living donor.

"We've always prayed for a miracle," Terry said.

That miracle might be Terry's large family -- seven brothers and sisters and their spouses. Robby needs someone with type O blood. Doctors have ruled out some family members. Others are in line for testing ... and it could be a pretty long queue if need be.

"We've had teachers, coaches, parents of friends of his that want to donate their kidneys, people from church," Terry said.

Robby's doctor said some people are lucky to have one person offer to donate.
"He's got quite a fan club," Valentini said. "He copes so amazingly well, you can't do anything but root for this kid."

The new kidney will have the protein that Robby's kidneys lack, and Alport syndrome will not damage it. And except for a regimen of drugs typical for transplant patients, Robby's life should be pretty normal.

"My goal is by next swim season to have a new kidney," Robby said.

http://www.mlive.com/flintjournal/index.ssf/2008/04/kidney_disease_doesnt_stop_gra.html