This article was originally titled "The long wait YMCA director on list for a kidney donation" and written by Warren Dillaway. It was published in the Sun., Aug. 7, 2016 edition of the Ashtabula Star-Beacon.
Photo credit:  Warren Dillaway, Ashtabula Star-Beacon

For more than a year, Ashtabula County YMCA Director Trevor Sprague has spent at least three nights per week prepping for a kidney dialysis routine that keeps him healthy while waiting for a donor kidney. The thirty-minute process concludes when he places a tube into a port and drifts off to sleep. "You have to find that silver lining. I can find way more good than bad in my life," the 40-year-old administrator said.

The first steps of his challenging journey began in 2000 when he was diagnosed with IgA Nephropathy — a rare disease, also known as Burger's Disease— which causes kidneys to fail. Sprague was told the disease was hereditary and many people diagnosed don't suffer kidney problems. He wasn't so lucky. At the time, Sprague was told he would likely need a transplant in 20 years, he said. "I went 12 years with no treatment, though I was going to school full time and working two jobs," he said.

In 2012, Sprague became executive director of the Ashtabula County YMCA. "The first thing I did was make an appointment" with an internal organ specialist, he said. Sprague said his kidneys were functioning at 43% in 2012, and that has decreased substantially "over time."

In January 2015, he was placed on the Cleveland Clinic kidney transplant list and the frustrating wait began in earnest. "It is an extremely complicated process. You don't hear from the Cleveland Clinic unless they have something to tell you," he said, adding, "I have no idea how long" it will take to find a match. Kidney transplant officials estimated a three-year wait, but nothing is cast in stone, Sprague said. Once contacted Sprague must dash to the Cleveland Clinic for the surgery if, and when, a match is found. "I have to be there in a relatively short period of time," he said. "I am not expecting a call for three and a half years."

Many friends and family, at least two dozen, offered to donate their kidney, Sprague said, but none were deemed a good match. Some were ruled out during a phone interview and others after a battery of blood tests. The final two candidates were eliminated during two days of testing at the Cleveland Clinic, Sprague said. "One was my sister, who was an ideal match but found that she has the same disease I have," he said. Sprague said he prefers to assume it will be a long time for a match rather than hope for an early win. "I am looking long-term because I would rather get excited when it happens sooner," he said.

In the meantime, Sprague walks to his "medical supply closet" three nights per week to begin the 30-minute process to prepare for dialysis. He said it is nice to be able to undergo the procedure mostly during sleep, but the regimented routine is important to maintaining his safety. He said each time new tubes must be put in place and antibacterial soap used to make sure there is no infection. "My particular treatment takes six and a half hours and I do it overnight," he said. Sprague said it includes three portions of fluid placed into his chest cavity that are then drained. "The third drain hurts a bit, so I wake up and have to sit up," he said.

Sprague said the biggest physical challenge is being tired all the time. He said it has been hard to seek assistance after years of being self-sufficient and the one to aid others. For example, he always helped people open jars — and now he must seek help. "I would never ask for help," he said, but "there has been no shortage of people wanting to help." 

He said the YMCA board of directors and staff have been great. "The board at the Y has been great giving me the flexibility to stay healthy," Sprague said. Staff and board members have also offered significant support to him as a person. He said the staff's commitment to their jobs also makes it easier for him to be an administrator. "They don't drop a bunch of extra work in my lap," he said.

Sprague urges people to become organ donors, which can be done on the Ohio driver's license application, or by free gift through a donor hotline number [1-800-223-2273 x 46996]. "There are more people who need organs then people willing to give," he said, adding there are 100,000 people with two bad kidneys in need of one for a transplant. "People can survive and live perfectly normal lives with one kidney."

Sprague said he feels his life isn't nearly as challenging as others, including his own sister-in-law who is fighting breast, lung and brain cancer at the same time. "I think about her and I think whatever I am going through is nothing," he said. "There is treatment available and there are things I can do. There is way more hope than to be depressed about."