Hermosa Resident Beats Odds at Transplant Games

At the U.S. Transplant Games, where hundreds of organ recipients compete in Olympic-style events, Hermosa Beach resident Holly Miyagawa, 39, doesn't introduce herself by name.

Instead, she says, "I'm a kidney, 10 years out." It's a habit she shares with other organ recipients. 

"It's kind of funny because I'll say, 'Oh, this is my friend Pat, she's a liver, she's six years out,' " Miyagawa said. "It's just a bond you have with people you don't have with family and friends."

The games, sponsored by the National Kidney Foundation and held in early August in Madison, Wis. this year, provided an opportunity for organ recipients to revisit their lives as athletes. The four-day competition featured 13 sporting events. 

Miyagawa won gold in racquetball, the 100-meter sprint, long jump and volleyball. She won silver in the 200-meter sprint despite tearing her Achilles tendon in the race.

"I originally was going for gold but I ended up pulling it around the 40-meter mark," she said. "Luckily it didn't hurt, I thought my shoe broke… When I looked behind me to see if I tripped on something, I jumped to the finish line and saw 'Oh, my ankle shouldn't be hanging like that.' "

Miyagawa is using crutches to walk, but hopes to nurse her injury back to health in enough time to train for the World Transplant Games in Sweden next summer.

"You think back to the days when she first found out [she needed an organ transplant] and she was so sick… We had to stop and hope that she lived," said Miyagawa's mother Kaethe. "To see this kind of turnaround, it's remarkable and a special thing to be able to watch."

Outside of competing in the U.S. Transplant Games, Miyagawa also volunteers with the National Kidney Foundation by helping to organize fundraisers and local walks. She also speaks with high school students, through the local nonprofit One Legacy, about the importance of signing up to be an organ donor when they obtain their driver's license.

"Some people believe if I'm in an accident and unresponsive then ambulance drivers might not work as hard to save me if they see I'm an organ donor. And that is so not true," Miyagawa said to dispel a common misconception teenagers believe.

Miyagawa was the same age as most of the high school students she speaks with when doctors told her that she was born with a birth defect to her kidney. She was 16 years old, and attending Thousand Oaks High School.

"All I wanted to do was get my driver's license and go on with my life," Miyagawa remembered.

Her parents struggled with the news. Doctors said that because of the defect, Miyagawa's kidney was going to fail soon, and an organ transplant was inevitable, her mother recalled.

"Back then, my husband and I couldn't believe it," Kaethe said. "When we found out we thought, 'Oh my God, this is our baby.' It was a horrendous thing to go through."

Miyagawa's kidney failed in November 1999, requiring her to be put on dialysis until doctors could find an organ her body would accept. The young woman who loved to play beach volleyball grew weak and lost 25 pounds.

Her brother immediately asked doctors to test him to see whether either of his kidneys were a good enough match to save Miyagawa's life but was told no. Kaethe also wasn't a good enough match, and Miyagawa's father had passed away years before.

That's when Miyagawa's older cousin, Darlene Navarrete, knew she had to do something. 

"I talked to my mom and I said, 'If I don't test and something happens I'd feel bad I didn't even try,' " she recalled.

Doctors put Navarrete through a series of tests and was told to speak with psychiatrists to confirm that the choice to be a possible donor had been independently made.

Tests confirmed that Navarrete's kidney was a perfect match for Miyagawa. The two were immediately scheduled for surgery, and within months Miyagawa was back to her old self, she said.

"There are so many people on a transplant waiting list who aren't as lucky as me," Miyagawa said. "Some people don't have that privilege of having a cousin who is a perfect match."

There are currently more than 100,000 men, women and children waiting for a lifesaving organ transplant in the U.S., according to the National Kidney Foundation. Out of that number, about 80 percent need a kidney.

"It's really nice to see someone get their life back from what you give them," said Navarrete, who added that the surgery to donate a kidney wasn't too invasive. Miyagawa "was so sick and after giving her my kidney she's running around… If I had to do it again, I would in a heartbeat."

Navarrete wasn't able to see Miyagawa run in the U.S. Transplant Games this year, but she attended the 2008 games, which were held in Pittsburgh.

Miyagawa said that she couldn't believe that her cousin was fearless enough to go under the knife to donate her kidney, but hesitated to attend the games because of a fear of flying.

"She was able to get me to go to the games two years back in Pittsburgh, but I said, 'OK, I'll go once, that's it. I'm done,'" Navarrete said.

Miyagawa laughed at the thought of her cousin's fear.

"It took her months to decide if she could fly on the plane," Miyagawa said. "But she had a blast."

Kaethe also attended the 2008 games. "It's expensive for the foundation to host these games," she said. But they "give everyone a chance to know they're just normal people."

After seeing her daughter experience the difficult and painful stages of transplantation, and then compete in the games just a few years later, Kaethe said that she realized sports give organ recipients something to look forward to post-surgery.

"It gives the athletes something to hope for when they didn't have much of anything before," she said.