Kevin Schnurr, 27, has been waiting for a kidney transplant for more than a year, so he created a Facebook page to help him find a donor. Its message? "Hey I just met you, and this is crazy. I need a kidney, so donate maybe."
It's not quite as catchy as Carly Rae Jepsen's "Call Me Maybe," but we'll take it.
Schnurr, a graphic designer from New York's Long Island, said he felt fine until the summer of 2012. He'd just started a new job but noticed that he was extremely tired all the time. He would come home from work at 5 p.m., go to sleep and wake up for work the next morning, feeling just as drained as he did before.
"I thought it was just from starting a new job and being stressed out and so on and so forth," Schnurr said. "I let it slide for a while."
But soon nausea set in. Even eating made him feel sick.
Then, in July, his ear started ringing for no apparent reason, so he went to a clinic to have it checked out.
"They took one look at me and my blood pressure was super high -- so high they had to send me right to the hospital," Schnurr said.
After weeks of blood tests and two kidney biopsies, doctors learned that Schnurr had Alport syndrome, a hereditary condition that damages tiny blood vessels in the kidneys and can progress to kidney failure. Schnurr's kidneys were only 15 percent functional, so they weren't removing toxins from his bloodstream properly.
According to the National Institutes of Health, about one in 50,000 newborns have Alport syndrome.
Schnurr spent the next several months in the hospital, and once he was discharged in October 2012, he started doing peritoneal dialysis at home. For the past 13 months, Schnurr has been on the organ transplant waiting list, hoping for a kidney that will return him to an almost normal life, but he'll still need to take immunosuppressant drugs to prevent him from rejecting the organ.
Although women can have Alport syndrome, they often don't show symptoms, which is why Schnurr believes he inherited the syndrome from his mother. And because of that, she couldn't donate one of her kidneys to him. His father, who has a history of skin melanoma, was also disqualified from donating a kidney. Since Schnurr is the only child of two only children, finding a family member to give him a kidney wasn't an option.
"We're not even a family tree," he said with a laugh. "We're like a family shrub."
Every night, Schnurr hooks himself up to a dialysis machine before bed and spends 10 hours having toxins removed from his body while he sleeps. It's not so bad, he said, but there are quite a few things he misses.
"The No. 1 thing is definitely traveling," he said. "The farthest I've traveled is Philadelphia, and I brought the machine with me. ... I would like to go away for a week and not have to worry about a machine."
He also said he misses eating things with potassium and other nutrients that are tough for his body to handle while on dialysis.
"Bananas, orange juice, tomatoes -- anything delicious in moderation," he said, adding that he takes seven pills with each meal.
Schnurr said the Facebook page, which he put up about a year ago, has met with only minimal success, but his high school put out a letter to alumni to help him find a donor. He said he has a few people going in for testing next week.
- Disease & Medical Conditions
- Alport syndrome