Facing kidney failure, local man shares story to raise awareness for organ donation

Three Thanksgivings ago, Jason O’Neal was rushed to the hospital after dinner.

He’d gone to dinner with his wife, Jennifer, at her mother’s house, and felt his face growing numb after arriving back home.

O’Neal thought the issue was with his blood pressure, which the hospital recorded as 268/192. Healthy blood pressure for an adult is around 120/80.

It turned out the blood pressure was a secondary issue. O’Neal’s kidneys were failing, already in late-stage renal disease. He was 41.

Healthy kidneys filter potassium out of the body, but sick kidneys start failing at this job, letting potassium build up in the bloodstream. O’Neal’s potassium levels were so high they should have been lethal.

“The machine’s like, ‘Yeah, you’re done,’” he said. “They said if I’d waited any longer, I’d have died overnight.”

He spent a week in the Deaconess Hospital intensive care unit, where he started dialysis for the first time. Once he was released, he developed a regular dialysis schedule: Monday, Wednesday and Friday, for four hours at a time.

Dialysis is a temporary solution for late-stage kidney disease. It removes blood from the body, filters out salt and potassium to keep levels safe, and helps regulate blood pressure.

But over time, people like O’Neal need longer and longer dialysis to keep their blood healthy. Eventually, he’ll have only two options: get a new kidney, or die.

Now, O’Neal and his family are hoping that sharing their story might encourage people to sign up to be organ donors, or consider living kidney donation through Sacred Heart’s transplant center.

O’Neal’s kidney disease is not entirely a surprise. As a kid, he had a condition called ureteral reflux, which causes urine to flow backward from the bladder into the ureters, which connect to the kidneys.

Doctors now know surgery can fix the problem, but at the time, he was told it would go away as he grew up.

“They didn’t know much about it when I was a kid,” he said.

That started the damage to his kidneys. Years of high blood pressure, which runs in his family, didn’t help.

His stepfather went through testing to be a possible kidney donor. He matched well and was nearly cleared to donate, but failed a blood pressure test at the last minute. O’Neal’s 20-year-old daughter isn’t an option, since she has the same reflux condition. And Jennifer, his wife, isn’t an option because she needs to be able to care for him after surgery.

Currently, 1,387 people in Washington are waiting for a kidney, according to LifeCenter Northwest, which manages the region’s organ donor program.

Sacred Heart has 257 patients in the area waiting for a transplant, but patients come from across Eastern Washington, North Idaho and sometimes as far as Montana. Last year, the center performed 47 transplant surgeries.

O’Neal is trying to stick to his routine, a difficult feat for someone with hours of medical treatment each week. He’s worked at Les Schwab since 1999 in sales and service, a “demanding, physical job.” For now, he’s putting in a full day at the tire center and then heading to his dialysis center in Spokane Valley after 5 p.m.

Most patients sleep while they’re hooked up. He tends to text Jennifer, he said, counting down the hours. Usually, he doesn’t get home until 10 or 11 p.m. and is often in pain. Severe cramping across the body is a side effect of dialysis, and he often returns home shivering because taking blood from the body cools its temperature.

“By the time you recover, you’re right back in there again,” he said with a laugh.

If you’re on the kidney waitlist, travel is difficult. You could get a call at any moment, and if you can’t get to the hospital for surgery within a few hours, you’re out of luck.

“If you get that call and you’re not here, you’re done. It’s going to the next person,” Jennifer O’Neal said.

The family used to go on long drives most weekends, but has had to cut back, to stay within range of the hospital.

Jennifer O’Neal took to Facebook Nov. 20 to appeal for donors. While many kidneys come from people on the organ donor registry, who agree to donate after their deaths, transplants from living volunteers usually perform better.

“I figured I see these posts and they work for some people, so why not try,” she wrote. O’Neal’s blood type is A positive.

Sacred Heart has a screening process for potential living donors that includes medical evaluation and type testing to check compatibility. Anyone interested in a packet about living donation can request one by calling (509) 474-4500.

Signing up to be an organ donor after death also helps. Many people note their choice on a driver’s license through the Department of Licensing, but donors can also sign up via LifeCenter Northwest, at lcnw.org.

Until they find a donor, the O’Neals are trying to keep their lives as normal as possible. Visits from their 2-year-old granddaughter, Kinsley, are a highlight, and they keep a toy oven in the living room for her.

Jennifer O’Neal was decorating for Christmas in their split-level duplex last week as O’Neal teased her, saying she’d claimed the job was done after only putting up two small trees.

He’s been told most people spend three or four years on the waiting list, so he’s crossing his fingers.

“I’m kind of hoping that this will be my year,” he said.