Changing the lyrics of a popular Carly Rae Jepsen song, the cover photo for Kevin Schnurr’s Facebook page reads: “Hey, I just met you, and this is crazy, I need a kidney, donate maybe?”
Social media is one way Schnurr, 27, of Nesconset, is reaching out to family, friends and strangers to find a living donor for himself, as his own kidneys have failed.
Schnurr said he didn’t know he had Alport syndrome -- a hereditary, degenerative kidney disease -- until July 2012, when he started experiencing fatigue, nausea and ringing in his ears.
After a doctor took his blood pressure, which was extremely high, Schnurr said he was rushed to Stony Brook University Hospital, where tests showed he had blood in his urine, elevated potassium and phosphorus levels and hearing loss. The symptoms suggested he could have Alport syndrome, which affects the body’s connective tissue, particularly in the kidneys and ears, said Dr. Edward Nord, director of the Stony Brook Medicine Division of Nephrology and Hypertension. A kidney biopsy confirmed he did.
“His kidney function was down to probably 10 percent,” Nord said.
The Arizona-based Alport Syndrome Foundation estimates the disease affects at least 1 out of every 5,000 Americans. Males are more prone to renal failure than women, Nord said.
Schnurr was hospitalized for three months and underwent an intense hemodialysis treatment.
“They got 26 years of toxins out of me,” Schnurr said.
Back at home, Schnurr has to be hooked up to a dialysis machine every night for 10 consecutive hours to remove the waste products from his blood since his kidneys no longer can. He’ll have to do this the rest of his life unless he gets a new kidney, Nord said.
Although Schnurr’s been placed on the National Donor List, he’s taking matters into his own hands and seeking a living donor.
In addition to his Facebook page, which has 525 “Likes,” Schnurr has reached out to his alma maters -- St. Anthony’s High School in South Huntington and the University of Scranton -- to tap their alumni networks. He said a few former schoolmates have come forward to donate, but none were a match.
Nord, who also runs Stony Brook’s kidney transplant program, said potential donors need to be healthy, under age 60, and have either an O-positive or O-negative blood type. Since the surgery is laparoscopic, he said, most donors are able to leave the hospital after three days, and feel close to normal within three weeks.
“Your life should not be impacted by this in the long run,” he said.
Given Schnurr’s young age and the healthy status of his other organs, Nord said he should flourish once he has a new kidney.
Alport Syndrome Foundation President Sharon Lagas said she’s impressed with the “positive, proactive” way Schnurr is handling his disease. He’s also raised $2,500 for ASF, completed a 5k for the National Kidney Foundation, and mentors younger Alport patients.
“He’s a great role model for a lot of other young men who are following the same path,” said Lagas, 52, who lost a brother to renal failure related to Alport syndrome and has two teen sons with the disease.
Schnurr said his condition has changed his outlook on life.
“I almost died last summer, it was a giant wake-up call,” he said. “I’m pretty happy to still be here.”
Anyone considering donating, can contact Stony Brook's Transplant Office at (631) 444-2209 or email Schnurr at email@example.com