Rare disease causes renal failure, leaves Seaford High grad in need of kidney transplant

Tyler Donohue of Seaford was always a healthy and active young man with plenty of energy, whether playing high school football, basketball and baseball or earning the rank of Eagle Scout.

But on Feb. 28, Tyler, then 25, was helping plan his parent's vacation to Connecticut when he collapsed with no warning in his kitchen in front of his 12-year-old sister, Annie. Tyler's head and shoulder struck the tile with a massive thud as he began having a seizure.

Tyler was rushed to Nassau University Medical Center, where he'd remain for the next three weeks as doctors tried to determine why he was in renal failure with virtually no kidney function.

Biopsy results led to a diagnosis of anti-neutrophil cytoplasmic autoantibody vasculitis, a rare autoimmune disease of the small blood vessels that destroys the kidneys, lungs and sinuses. In Tyler's case, only his kidneys were affected.

With neither kidney functioning, the Seaford High School graduate requires dialysis three times per week while he awaits a kidney transplant.

"It’s overwhelming and is a lot to take in and lot to bear with," he said. "There's tons of medicine and doctors and food restrictions. But I am optimistic we will find a donor. I am staying positive."

Parents can't donate

His adoptive parents, Peter and Katherine Donohue, are not potential kidney donor matches because of prior health conditions, and his birth parents also have medical issues that prevent them from donating.

Tyler is on the National Kidney Donor registry at NewYork-Presbyterian Hospital-Weill Cornell Medicine in Manhattan. But the wait for a cadaver kidney for a patient like Tyler with O-positive blood type in New York is an average of 8-10 years. Tyler's best hope is a living donor, family members said.

"It’s a process but I think it will happen," said Peter Donohue, a retired stockbroker. "It’s just a matter of time. But as time goes on I feel so bad for Tyler having to go through this process."

Even before his diagnosis, Tyler would spend a week fighting for his life.

Following his seizure, Tyler was moved to NUMC's intensive care unit with internal bleeding in his right kidney after his hemoglobin dropped to critical levels, requiring nine blood transfusions over the span of two weeks, his mother said.

He also had to undergo four treatments of chemotherapy to put the autoimmune disease into remission, allowing him to be eligible for a transplant.

"It’s been a very grueling 10 months. A very stressful 10 months for the family," said Katherine Donohue, who works part-time in the Seaford school district.

Dialysis can be grueling

Tyler began emergency dialysis on March 5 and now receives four hours of treatment, three days each week, through a fistula in his arm.

The days, Tyler says, can be grueling and have taken a toll on his energy levels. Tyler, who was working as a substitute cleaner in Seaford schools before the pandemic, no longer has the energy to work and has lost nearly 40 pounds since his collapse.

"It has not been an easy journey so far," Tyler said "I just stay positive. It affects everyone I am surrounded by so if I stay positive, maybe others I am surrounded by will follow suit."

Katherine Donohue says it’s possible through a "paired exchange" to donate a kidney on behalf of Tyler, even if the donor is not a direct match.

A paired kidney exchange, also known as a "kidney swap," occurs when a living kidney donor is incompatible with their recipient but does match another person on the waitlist. That donor would be paired with a matching recipient and Tyler would receive a kidney from a different donor.

"Our main goal is to get Tyler a kidney," Katherine Donohue said. "But also to bring awareness to the need for kidney donations. There’s more than 100,000 people waiting for a kidney and I don’t think anyone realizes how traumatizing it is to be on dialysis."

Long Islanders can learn more about Tyler's search for a kidney or register as a possible donor through the National Kidney Registry at www.NKR.org/LXQ354 or through the screening page at Weill-Cornell at https://cornell.donorscreen.org.

By Robert Brodsky

robert.brodsky@newsday.com@BrodskyRobert

Robert Brodsky is a breaking news reporter who has worked at Newsday since 2011. He is a Queens College and American University alum.