It got to a point where Kyle Sullivan had to do something.
As uncomfortable as it made him to share personal medical information with strangers, he said he decided he had to put it all out there and hope something good happens.
Sullivan has Alport syndrome, a rare genetic kidney disorder, and he’s been on the organ transplant waiting list for three years without finding a match.
Now he has made the Facebook page, Kyle’s Kidney Project, to create awareness about the need for living kidney donors and to maybe find a kidney.
“It is very difficult for me to put myself out there, to be so vulnerable,” said Sullivan, sitting on the couch in his tiny South Hill house. “But it’s what I want to do. I feel defeated just waiting.”
Alport syndrome is a genetic disorder that damages the tiny blood vessels in the kidney and affects mostly men. Sullivan is also losing his hearing because of the disease. His eyesight may go, too, and at 29 Sullivan isn’t ready to give up on his future. He has found no matches among friends and family.
“I’d probably be OK in dialysis for another couple of years, but eventually I will need a new kidney,” said Sullivan. “And that kidney would last 10 or 15 years. Then I’d have to go through the whole thing again.”
He created the Facebook page on a whim on March 6, and it already has more than 600 friends.
“I get a lot of well wishes,” said Sullivan, “I’d say 90 percent of the people who respond to the page are complete strangers.”
What surprised him the most were the stories people share in personal messages.
Sullivan said he’s gotten about four dozen messages, mostly from people in a similar situation or people who have friends and family members with kidney disease. He shares kidney donor information and updates about kidney disease research on his page, as well as raw YouTube videos of the painful dialysis procedure he goes through three times a week.
“Dialysis days are not good,” he said. “When it’s over I feel like I’m hung over. It’s like my brain doesn’t work. It’s really tough.”
He said the staff at Fresenius Medical Care, where he is in dialysis, is amazing and he’s made friends with many other dialysis patients there. But he’s often the youngest in the group and he has yet to meet anyone else with Alport syndrome in Spokane.
When Sullivan first decided to share his story on social media, he posted a short note on Craigslist.
“That was a mistake. The creep factor was just so high,” said Sullivan.
His friend Laura Prawdzik said Facebook has been much more manageable and comments and messages are positive.
“Spokane is a small town, people know people and word gets out,” said Prawdzik, about why sharing Sullivan’s story on social media is a good idea.
Sullivan has heard from a few potential donors, but nothing has firmed up yet. He explained that a donor must match his Type O blood and also be a match in three out of five other categories – all of which will be determined by doctors at Providence Sacred Heart Medical Center.
“This is not some backdoor kidney swap,” he said, laughing. “It’s a huge decision for the donor. In many ways the donor will have it worse medically than I will.”
He advocates for the social media angle.
“I think everyone in my situation should give it a shot,” said Sullivan. “If nothing else, it’s great for your mental health.”
Follow Kyle’s Kidney Project on Twitter at @KidneyKyle509 or on Facebook as Kyle’s Kidney Project.