.Former Santa Cruz Derby Girl’s Battle With PKD

On Nov. 3, Kelly van den Berghe thought she was getting a behind-the-scenes tour of AT&T Park. That’s what her husband Lex had told her, after all. He works for Adobe, and said the company was letting some of the employees take a tour of the stadium in the San Francisco Giants’ off-season, with Kelly his plus-one.

She was ecstatic. Kelly—who many in Santa Cruz know as Roxy Scarmichael, a founder of and former player on the Santa Cruz Roller Derby team—is a Giants superfan. Lex van den Berghe is also well-known locally. He was a contestant on TV’s Survivor in its third season (Survivor: Africa) and eighth (Survivor: All-Stars). He’s also known as the drummer for Bay Area bands Frontier Wives and Maids of Honor.

Kelly needed an amazing day. Lex had to push her through the stadium in the wheelchair she was in while healing from ankle surgery, due to repeat roller derby injuries that forced her to quit the team three and a half years ago.   

But even more devastating was the state of her kidneys. Kelly was born with Polycystic Kidney Disease (PKD). Now at 52, her kidneys were nearing failure. She was on the transplant list, which can take years. She knew that once they failed, she would have to live on dialysis, a very limiting and exhausting existence. The only other option was getting a live donor, but finding someone willing to part with their kidney who also happened to be a match was unlikely. Josh Harrold, a friend of theirs for 15 years, offered his, but he wouldn’t know for another month if he was a match.

At least that’s what he told her. The truth was, he had already finished the testing and was a match. He had devised this grand reveal at the Giants’ stadium to deliver the good news to her, and asked Lex to tell her a lie—any lie—to get to the stadium. Lex agreed, reluctantly.

“I’m not a very good liar, especially when it comes to her,” he says now.

Fortunately, she was so excited about the prospect of getting to see the Giants stadium, she didn’t look at Lex’s story too closely. Which was a bit unusual, too.

“Normally, it’s really hard to surprise me, because I have this gut instinct when something’s off,” Kelly says.

Everything felt fine, until they got on the green. She didn’t see any of Lex’s co-workers. But before anything sunk in, Kelly noticed the Jumbotron had her name on the screen. It read: “Kelly, I know you’re a Giants fan … but you’re about to have a Royals kidney.”

She turned and saw Harrold standing across the green. Shocked, she leapt out of her wheelchair toward him.

“All common sense went out the window,” Kelly says. “I was going to go run to him, except I’m in a cast. He finally got to me and I held on to him—‘Oh my god, this is amazing.’”

LONG ROAD

Flash-forward: I’m sitting with Kelly and Lex at the kitchen table in their quaint Santa Cruz house on a lazy Saturday in early December. Their dogs and cats approach us as we snack on cheese, bread and fruit, each pet desperate for attention, food, or a little of both. Kelly is walking around on crutches. She still uses the wheelchair when she needs it—she is healing, but it’s a slow process. She hopes her ankle has a chance to heal before she gets her kidney transplant.

“I have to be in bed now because of my foot. I want some period of time where I can get out and walk and bike and do stuff. I’m ready to run, because I know the next step is going to be healing my kidneys,” Kelly says.

Her transplant, she says, could come anytime between a month and a year. Her kidney is functioning at about 18-20 percent, and doctors are trying to squeeze as much life out of it as possible before replacing it. They are waiting for it to drop to 15 percent functionality before going forward with the transplant.

Three weeks after the interview, she tells me they expect her to reach 15 percent functionality in six months.  

Kelly’s condition, PKD, is genetic, and causes numerous cysts to grow on her kidneys. The cysts can increase the size of the kidneys dramatically. A normal kidney is the size of a fist. Some folks with PKD can have kidneys grow to the size of footballs. The more cysts grow, the less the kidneys are able to function properly.

“Although it isn’t well-known, it is one of the most common life-threatening genetic diseases,” says Angelike Gaunt, director of marketing for PKD Foundation, an organization that raises funds for research to find a cure. There is currently no treatment. Gaunt says that PKD affects 600,000 people in the U.S., and an estimated 12.5 million worldwide. The PKD Foundation is the only organization that exists solely to cure PKD.

The average wait for someone’s first kidney transplant, according to Gaunt, is 3.6 years, and 13 people die each day waiting for a transplant. The wait can vary depending on location; Kelly was told by the Stanford Medical facility that the wait would be between 8-10 years.

Wait times could greatly decrease if more people signed up to be a donor. Only 52 percent of Americans are signed up to be donors, according to Donate Life America.

The best option for anyone facing kidney failure is to get a live donor, as Kelly has. But that doesn’t mean her prognosis is perfect from here on out.

For the past 20 years, she’s lived with some degree of pain from her kidneys. Sometimes they hurt, other times the disease saps her energy. Once she gets Harrold’s kidney, she will still have PKD, although the symptoms will go away temporarily. The new kidney can last between five and 20 years. Then she’ll need another. Her pain and exhaustion will increase the longer she has the new kidney.

There’s also all the medication she’ll need to take to prevent her body from rejecting the organ. In essence, she’ll need to shut down her immune system, which is designed to prevent foreign objects such as a new kidney from surviving inside of her. After the transplant, as a side effect, she can expect to get sick often.

“I’m totally scared. It takes an emotional toll on you because you’re grateful, but at the same time you’re freaking out,” Kelly says. “I’m so thankful because I’ve been able to live a pretty healthy life up to this point. It didn’t stop me from doing the things I wanted to do like it does now.”

Without a live donor, she would eventually have to hook up to a dialysis machine several times a week, for several hours at a time, while the machine removed waste and extra fluids from her blood; basically, doing what a kidney should do. The pain is lessened, but it’s still exhausting. It got so bad for Kelly’s grandmother that she finally sat the family down, said her goodbyes, and went off dialysis, effectively ending her life. Fortunately for Kelly, she’ll likely avoid dialysis completely. At most, she’ll have to go on it for a short stretch.

LOVING THE SURVIVOR

Despite everything Kelly has gone through—and has yet to face—she is upbeat.

“There are people that have a disease, or diabetes, and just drown in it. I’m like, ‘This is going to happen, and I know it’s going to happen. I’m not going to let it stop me from enjoying my life. I’ll deal with it when it happens,’” Kelly says. “I was never really, ‘poor me. I have kidney disease.’”

As a kid, she always knew she could have it—her mother and grandmother both did—but it wasn’t until after high school that she knew with certainty that she had inherited it. She met Lex when they were in their early 20s and explained her condition to him, but he shrugged it off.

“I didn’t care,” he says. “I was in love with her. You don’t select a mate the way you do a car. If you’re in love with that person, you’re in love with everything.”

Lex and Kelly met at a memorial fundraiser for San Jose musician Scotty Vollmer in 1988; Frontier Wives was on the bill. Lex was engaged to someone else at the time, but shortly after the show, Kelly told a friend she knew that she and Lex were going to get married one day. Sure enough, they were soon dating, and five years later they were married. They had their first son, Corbin, in 1992.

The intense love between the two of them is obvious to anyone who gets near them for any amount of time. When Lex was on Survivor: Africa, there was an episode where loved ones were videoed in to engage in personal trivia with the contestants, and Lex and Kelly won. No one was surprised.

Other than monitoring her condition, Kelly’s PKD rarely came up, except regarding children. They were told there was a 50/50 chance of passing it on. Unfortunately, both of their kids inherited the disease.

Kelly has lived a relatively normal life, except for the occasional kidney pain and bouts of exhaustion, which sometimes last for days. It started to become noticeable in her late 30s. About 10 years ago, in her early 40s, she began inching toward kidney failure. Her kids had entered their teenage years, and she badly needed something to shake up her life. That’s when she discovered Roller Derby.

SCAR TACTICS

Kelly was in Starbucks at 41st Avenue and Soquel when she saw a flyer for the newly forming Santa Cruz Roller Skate Girls. She soon became one of the first to join the team of roughly 20 women. The organization became a nonprofit in 2009, and was renamed Santa Cruz Derby Girls. Kelly was one of the oldest players, but she was also one of the best, and most intense members of the team. Her multiple injuries attest to her visceral approach to the game.

“She’s had six derby-related surgeries, one for every year she was in derby, pretty much,” Lex says, with a mixture of admiration and frustration in his voice.

She even got hit in the kidney once, which she says was extraordinarily painful. But that didn’t keep her out of the ring. She loved everything about derby—the community, the excitement, and most of all seeing what she—a mom of two—was capable of.

In a strange twist, it turned out that, kidney punches aside, derby was actually improving her kidney function. Kelly was exercising rigorously, and in the best shape of her life. Both Lex and Kelly think that had she not played derby, her kidneys would have already failed by now. The only reason she stopped was her ankle injuries. In 2010, she got surgery for a torn ACL. She coached for a year, then returned to the ring. In 2012, she broke her foot, and that was it.

“I really needed derby when it came. It was like I found myself again. I wasn’t needed as much as a mom,” Kelly says. “You know when you get that first hit, that you’re either going to love it or hate it, and I loved it. It was a great thing. There’s no days off. It was a full-time job.”

After her first surgery, something changed in her body chemistry. She was diagnosed with Fibromyalgia and chronic pain, but her kidneys were still functioning pretty well.

Last June, her doctor told her that it was time to get on a transplant list. She always knew that day would come, but still felt a sense of shock. She’s still grappling with that feeling, as she prepares for the six-month wait.

“I’m not gonna lie,” she says. “I feel like shit’s about to get real.”

In August, Kelly posted on Facebook about the state of her kidneys, telling friends and family that she was in need of a transplant. Other people in the past had assured her they would give her a kidney, but Harrold was the one who stepped up.

“Josh, he’s this wonderful human being. He’s kind, generous and selfless. I knew we were going to be a match. I don’t know why,” Kelly says.

BAPTIZED IN YOO-HOO

The story of how Harrold met the van den Berghes 15 years ago is possibly the strangest part of this story. While Lex was competing on Survivor: Africa in 2001, CBS asked all the contestants to fill out a long personal questionnaire, which he likens to the personal info you’d fill out for a dating site. One of the questions was “favorite beverage.” Lex wrote down: “Yoo-hoo.”

At that time fresh out of college, Harrold was the national spokesperson for Yoo-hoo. He would tour with Blink-182 and Green Day one month, getting punk kids to drink Yoo-hoo, and then deliver bottles to the Late Show with David Letterman in hopes that he would mention the product on air. (He did.)

Someone at Yoo-hoo was a fan of Survivor, and noticed Lex had written in the drink on his CBS personality profile. She sent Harrold—who was in L.A.—to drop off 100 cases of Yoo-hoo to Lex, as well as personalized embroidered Yoo-hoo shirts, skateboards, a cooler, a boombox and other Yoo-hoo swag. It took Lex a couple years to work his way through all that Yoo-hoo, and he still has a lot of the swag. “I’d drink it daily, and I never got tired of it. Who gets sick of Yoo-hoo? It’s fucking delicious!” he says.

When Harrold showed up, he and Lex chatted for hours over beers and dinner. They became fast friends, and kept in touch through the years.

“Our connection was spawned by Survivor, but baptized in Yoo-hoo,” Lex says. “There’s times I feel like, ‘why did I sign up to be a part of that reality show?’ I feel like I got the answer. It was predetermined I was going to do this, because it would ultimately save my wife’s life. Kelly and I are so close. We’ve had 25 of the best years anyone could ever have. Because of Josh, we may get another 25.”

Harrold, meanwhile, says he is overjoyed to be giving Kelly his kidney. There is no question that he understands what Lex and Kelly are going through—three years ago, his wife was diagnosed with a brain tumor. The first four surgeons they went to said it was inoperable, that she had months to live. The fifth and sixth surgeons felt differently. They went with the sixth, who successfully operated, and then gave her chemo. She has been doing better; just recently, it’s grown, but Harrold and his wife are optimistic they will beat it again. She is currently a couple of weeks into radiation treatment.

During this time, Lex called Harrold regularly to check up on him and give him his unconditional support.

“It was the hardest thing I’ve ever been through,” Harrold says. “You can be mad and mope about it, or do what my wife and I have done and realize that this is the hand that you’ve been played. I had a very sick wife. I needed something to give us both hope. I know Lex’s been in the same shoes. If I’m able to make sure he’s able to go into old age with his wife like I’m trying to do, I’d be honored to do that.”

Harrold orchestrated the entire AT&T park event for Kelly with a few calls to friends in high places. “If it’s epic news, it should be told in an epic way,” he says. This isn’t out of character for Harrold, who did something similar for his wedding proposal, which is on YouTube with over 250,000 views.

“It’s not enough that this guy is already gifting a kidney, he’s now completely orchestrated this grand reveal,” Lex marvels. “This is how good a dude this guy is.”

As for the Jumbotron message about the “Royals” kidney, it’s because Harrold’s favorite team is the Kansas City Royals. He was able to talk to someone at the Royals and have custom jerseys made for Lex, Kelly, Harrold and Harrold’s wife, Erica. Erica’s said “Love Life.” Lex’s said “Donate Life.” Harrold’s said “Royal Kidney 1,” and Kelly’s “Royal Kidney 2.”   

Harrold, of course, had everyone put on their custom Royals jersey for a photo. He and Kelly always had a friendly baseball rivalry, and under any other circumstances, she would never even think about putting on a Kansas City Royals jersey. But this was no ordinary day.

“The Royals created these custom jerseys so we could force Kelly into enemy colors for the day,” Harrold says, laughing. “I told her it’s all worth it if I can get photos of her in a Royals jersey.”

For more information on PKD, visit www.pkdcure.org. To become a registered organ donor visit www.donatelife.net/register.