Gift of love: Hilton Head Island mother donates kidney to ailing son

When Zach Ruhlin steps onto the links at Wexford Plantation on Saturday, he'll carry with him a small piece of his mother.

Her kidney.

As a child, he was diagnosed with Dent's disease, a rare condition that affects kidney function and ultimately ends with kidney failure. Four months ago, with her son in desperate need of a kidney transplant, Kelly Ruhlin stepped in as his living donor, giving one of her organs to her son.

A standout golf player who fielded offers from Wofford University before his disease made it nearly impossible to play, Zach will make his return to the golf course Saturday during a fundraiser in Wexford, where the Ruhlin family lives. The neighborhood will hold a golf outing and a dinner to help raise money to cover the family's medical expenses.

His disease required frequent monitoring and medication over the years, but the expectation was that Zach's kidneys would function well enough that he wouldn't need a kidney transplant until he was 40 or 50 years old -- far enough away to hope for a cure or regenerative medicine to develop enough to easily replace his kidneys, his mother said.

But as his health started to decline toward the end of his freshman year in high school, it was clear his kidneys wouldn't hold out that long.

'SILENT' DISEASE

The Ruhlins had monitored Zach's diet for years, making sure he ate well and drank lots of water.

Golf kept him physically and mentally fit, but he couldn't shake a persistent pain in his chest.

His sophomore year, doctors misdiagnosed the problem as acid reflux. Their treatments wouldn't help the pain. His health began to lag.

Golf had become harder and harder to play, and Zach was forced to step away from the teams at Hilton Head Christian Academy and Hilton Head Preparatory School. It appeared he'd never get the opportunity to play at Wofford, who had contacted him about playing on their golf team.

By his junior year, his already-low kidney function dropped below 40 percent. His "silent disease" was becoming a serious issue.

"His disease had a very unusual pace," Kelly Ruhlin said. "You'd never know he was sick from looking at him. Some of his teachers didn't believe me early on, especially when we couldn't find the answers to what was wrong."

Ruhlin brought her son to a specialist in Savannah. It was there the problem was finally identified: Zach needed his gallbladder removed. The test that caught the problem wasn't typical for a patient his age, and was usually performed on heavyset, older women, she said.

"He was so young, the gallbladder wasn't considered to be a problem," she said.

Ruhlin went into surgery in Savannah over spring break his junior year, but his condition only deteriorated.

The family would quickly find out how bad things were.

Soon after the operation, Kelly Ruhlin was on the phone with a doctor who heard Zach hiccup in the room.

Pointing it out as a possible sign of severe dehydration, the Ruhlins rushed Zach to the hospital, where a bacterial infection in his kidneys was discovered that was shutting them down, Kelly Ruhlin said.

His kidney function had dropped to eight percent from the infection, she said. He spent 14 days in the Medical University of South Carolina's Children's Hospital. He missed his junior prom.

While his kidney function did rebound, it was not close to the point it was before the infection, his mother said.

A transplant was an imminent inevitability.

With his health still tenuous, the Ruhlins held Zach out of school at the beginning of his senior year. Though he took online classes, his illness kept him from other things.

He'd miss his senior prom in the spring.

Golf was a distant memory.

"It was horrible," his mother said. "He was essentially held captive in the house. Anything he tried to do, he'd just lose more fluids."

Between the infection and his deteriorating kidneys, Zach lost 20 pounds.

By Christmas, it was clear -- he needed a kidney transplant.

But there was a long wait time.

Zach would be one of over 124,000 people waiting for organ donations in the U.S., according to Wexford neighbor and Heather Trew Foundation for Organ Donation and Research founder Judy Trew.

Much like Zach Ruhlin, Trew's daughter Heather had needed a kidney transplant. Heather Trew suffered from kidney problems after eating undercooked hamburger when she was 7.

At 12, Heather received a kidney donated by her aunt. She died in 2007 after the transplanted kidney failed, at 20 years old. Her parents set up the foundation that bears her name to educate and register organ donors, fulfilling a wish Heather had while she watched others wait for a life-saving transplant.

If Zach waited too long, his health could decline to the point where he needed to start dialysis.

For Kelly Ruhlin, there was no question on what to do: if she was a match, her son would get one of her kidneys.

"I never had to decide," she said. "I wanted to save his life and I knew I would be fine. I never had any doubts. I knew the sooner he got the kidney, the quicker he could continue to improve his health."

She started the battery of tests confirming her viability as a donor in January.

If she wasn't an optimal match, the transplant would have been regarded a treatment, not a cure, and Zach still would have to go on dialysis.

Because of privacy regulations, whenever Kelly Ruhlin -- ever the concerned mother -- needed to ask questions about her son's health, her doctors had to leave the room.

After a few months of near-constant testing, the transplant was scheduled.

By the day of the transplant, July 22, Zach's kidney function was two percent above the threshold to start dialysis.

"We're blessed to have dialysis as a backup, but it is brutal," she said. "It's exhausting. You're living off a machine. It should be something you transition from, not your only option."

SUCCESS AND A SHAVE

Kelly spent a week in the hospital.

Zach was expected to stay two weeks. But even after the transplant, his health failed to improve, and his doctors were worried his body had rejected Kelly's kidney.

Several weeks after the transplant, the culprit was finally discovered: Zach's native kidneys were producing nearly six liters of urine a day, double or even triple what a person should produce. His kidneys were in shock.

They needed to be removed.

On Sept. 9, he underwent a second surgery.

The Ruhlins went back and forth between Charleston and Hilton Head to see Zach regularly, all while Kelly was trying to heal from her surgery. Sometimes they would spend several days in Charleston. At other times, they drove back to Hilton Head, only to get back in the car and head back up immediately.

"In our hearts, we knew it would correct itself," she said.

After nearly two years with no progress, Zach's condition finally began to improve after the second surgery.

His kidney function began to increase, and the level of toxins began to drop.

Zach will still need to take some medication and monitor his health regularly, but his mother's kidney should last him at least 20 years, with the possibility of lasting him twice as long.

Since returning home, he has begun studying for his SATs and hopes to attend College of Charleston or Wofford -- playing golf, ideally -- next year, his mother said.

Kelly Ruhlin said she has no lingering effects from the transplant. If any complications were to arise that necessitated a transplant, she'd move to the top of the waiting list, she said.

After the transplant, Zach grew a beard, telling his parents he'd shave it off when he got good news.

The full-size blonde beard came off a few weeks after returning home, Kelly Ruhlin said.

"He's a point from where his kidney function needs to be," she said. "Numbers that had never been good are all good now. It's amazing what they could do. It just blows my mind."

'WITH A LITTLE HELP FROM OUR FRIENDS'

While her son was finally healthy after years of struggling, hospital and travel bills mounted -- rising to about $30,000 for the transplant and procedures over the summer, Kelly Ruhlin said.

Two friends of the Ruhlins from Wexford contacted Trew, who had considered setting up a GoFundMe for the family, about holding a local fundraiser to benefit the family.

A golf outing was the idea of Andre Naniche -- a golf mentor for Zach Ruhlin whose mother also suffered from kidney ailments and needed a transplant -- while Kelly Ruhlin's friend Connie Sewell offered the idea to hold a dinner in the neighborhood.

Both will be held Saturday through the Heather Trew Foundation. About 30 people are expected to play in the golf outing, and 90 are expected to attend the dinner.

After a practice round earlier this week, Zach will play his second game of golf after months of being away from the course, Kelly Ruhlin said.

"It's just amazing that they're doing this," she said. "I'm in shock. It's surreal. We're going to be all right with a little help from our friends."

Judy Trew hopes Zach and Kelly Ruhlin's story will encourage people to become organ donors.

The foundation that bears her daughter's name has worked hard over the past few years to reach college and high school students, educating them on what it means.

Although the foundation primarily targets young adults, Trew said people of all ages can be donors, and organs aren't "too old" to be donated.

"It's just not the case," she said. "A healthy organ is a healthy organ. Every time someone registers its a big deal."

The foundation finds students in leadership roles to set up chapters at schools to register people as organ donors. The foundation has added 7,000 potential donors to the national registry since its inception, Trew said.

"Heather met a lot of people at the MUSC transplant clinic who did not get a kidney in time," she said. "She told me we had to do something about this ... .It was all her plan. After she died, we knew what she wanted.

"Transplants are a miracle. There is a cure out there. The only thing we don't have is enough donors. It's a tremendous, tremendous gift. You can't use them when you're gone, but others can."

To donate

To donate to the Ruhlin family, go to http://www.theheathertrewfoundation.org and click on the 'Contribute Now' tab. Donations should be marked for Zach Ruhlin and the Ruhlin family.

To register to be an organ donor, go to http://www.theheathertrewfoundation.org and click on the Donate Life America logo to be taken to the national registry.

Follow reporter Matt McNab at twitter.com/IPBG_Matt.

This story was originally published November 12, 2015 at 9:26 AM with the headline "Gift of love: Hilton Head Island mother donates kidney to ailing son."