How an NBA GM discovered he was living with a life-threatening disease

SALT LAKE CITY — In the days before having cake for her husband’s 49th birthday and a flight to Honolulu for the opening of training camp, Gina Zanik made her stand. Her husband, Justin, the general manager of the Utah Jazz, had gone eight years without a physical exam and she vowed that he wouldn’t go eight more hours without making an appointment with the team doctor.

She told him he looked tired, thinner. The long gap in physicals felt like an anvil hanging over them. Justin countered with what he always did: There were the late-summer scouting trips to Japan, the Philippines and Australia; the trades; the games; the endless NBA front office calendar.

“Why wouldn’t I look a little tired?” he responded.

Gina had been on him for years to get the physical, but this felt different. Justin knew the steely look in Gina’s gaze — and knew his resistance was futile. For 15 years, he has witnessed her fighting for her family’s health and lives.

Gina is the co-founder and executive director of the Rare and Undiagnosed Network (RUN), an advocacy group with a mission has been both harrowing and heroic. Gina has advocated to everyone from hospital administrators to insurance providers to legislatures for children like their own — Ava (16), Oskar (14) and Lucy (12) — who live with unanswered questions and torturous symptoms from autonomic neuropathy.

The condition is borne of nerve damage that affects automatic body functions like temperature control, blood pressure and digestion. Neither Gina — who contracted it giving birth to Ava in 2007 — nor the kids have any treatments. There’s no possibility of a cure. Sleep is the only thing that they’ve ever found that helps on this endless diagnostic odyssey.

Gina has spent the entirety of motherhood pursuing complex medical questions that have no answers, and yet her husband had been too stubborn to get some answers of his own.

There are advantages to leading an NBA team. One is access to immediate medical evaluation and near immediate results. Justin set the physical for Sept. 28, 2023, with Jazz team physician David Petron. The Zaniks were celebrating Justin’s birthday on Oct. 1, the eve of the training camp trip to Hawai’i, when the results landed with a call.

“You’re in kidney failure,” Dr. Petron told him.

That Justin had been diagnosed with Polycystic Kidney Disease (PKD) — that he had only 14% use of his kidney left — did not come out of nowhere. PKD, a cluster of cysts that grows on the kidney and ultimately renders it functionless, is a 50-50 proposition on getting passed down to a child, according to studies. And PKD had a deep history in the Zanik family — including Justin’s father, Phil, who will celebrate his 21st anniversary of a successful kidney transplant Friday.

“It was always in the back of mind,” Justin said. “The whole time, knowing there was this 50% chance. But I always felt fine. I was always self-diagnosing myself.”

In early October, it was clear: Justin needed a kidney transplant, and needed it soon to stave off dialysis. He needed to get into the National Kidney Registry and on the donor list. Then he needed to get family and friends to test to see if they were matches. But with so much kidney disease in his own lineage and the low odds of an acquaintance becoming a match, the best chance to move to the top of the transplant list came with finding a friend or acquaintance — a good Samaritan, it’s called — to become a living donor. Essentially, you get someone to donate a kidney to the national bank, and you get a much better chance to move up the list to get paired with a match.

Now, this set something into motion that made him wildly uncomfortable: Asking for help, asking for attention.

“I’m a fixer by nature,” Justin said. “My job with the Jazz, my role with my family — I mean, I was a [player] agent for 15 years. I fixed a lot of s—. I’m the one who’s supposed to help. I’m the one who’s supposed to take care of everything. I really didn’t know how to ask for help, but I had to get over it.

“I knew I had to get over it.”

To tell owner Ryan Smith, CEO Danny Ainge and coach Will Hardy made him queasy. These are the franchise’s four leaders and a uniquely collegial decision-making group. Smith has a guiding principle: All-in on the franchise. “But that also means,” Smith said, “we’re all-in on our people. I made sure Justin knew: Whatever he needed, we had his back.”

For every blockbuster Jazz trade Justin had engineered in the GM job — from Donovan Mitchell to Rudy Gobert — his preference has been to let the owner, CEO and coach be the public touchstones. If nothing else, the relentless nature of the GM grind and navigating the bewildering illnesses of his wife and three kids had long ago grounded him in service to everyone else.

Hardy watches Justin walk office to office in the Jazz’s practice facility, popping in and encouraging his staff to open up about whatever they need from his leadership. Gathering them together to share his kidney prognosis hit him hard. In Justin’s mind, there are 100 or so people for whom he’s responsible every day. As he told them the news, he could see what flashed on a lot of faces: If Justin goes, what happens to me?

“I’m going to be around,” Justin told them all. “You’re going to be OK.”

Little moved him more than the scores of staff who offered to get tested to see if they could become kidney donors and matches for him.

“He is always a connector of people,” Hardy said. “He’s the guy who lets everyone else be the star despite having the title of NBA GM. He’s one of the least insecure people I’ve met in a business full of insecure people. I think it’s been hard for him to share this with people, because he knows that there will be attention that comes with that — and he doesn’t want it.”

If running an NBA front office sped up Justin’s access to a physical exam, it had no impact on his ability to get to the front of the line at the University of Utah’s Living Donor and the National Kidney Registry programs. Good health helped him — as did a motivated group of extended family and friends who had themselves tested for matches.

Through the winter, the solution emerged for Justin: Jeff Hart, the husband of Gina’s childhood best friend, Chrissy, passed the screening process and became eligible to donate his kidney into the national registry. That allowed Justin to move up the list, find a match and get a date set for his transplant: April 2.

Whatever relief existed, Justin and Gina knew they had an obligation to get Ava, Oskar and Lucy tested for PKD, too — there was a 1-in-2 chance it would be passed down to each of them.

As the kids went one by one, Gina watched the ultrasound technician pull up images of the children’s kidneys. Simultaneously searching the internet on her phone to see what the cysts would look like, it quickly became clear that they matched the real-time imaging of her children.

The technician could see Gina interpreting the ultrasound results for herself. They bonded in that room over the woman sharing that she had previously donated a kidney in a good Samaritan act herself. She wasn’t allowed to formally share the kids’ results, but it was clear to Gina what she was seeing.

As the family left, the technician could feel the devastation, choked up and simply said, “I’ll be praying for your husband on April 2.”

They stopped at McDonald’s for milkshakes on the way home, just as the test results landed in Gina’s phone. Another family meeting loomed in the kitchen. As it turned out, these were advanced forms of PKD, and will likely require Ava, Oskar and Lucy to undergo transplants before they turn 30 years old — perhaps multiple times throughout their lives.

“It is incredibly unfair,” Hardy said. “Haven’t they dealt with enough? But they handle it with such grace and positivity. They don’t complain. They don’t want people to feel sorry for them. I don’t know how they do it — it’s a remarkable strength.”

When Ava was 5 years old, her hands turned red, then her limbs and soon her body couldn’t regulate its temperature. There were massive migraines, debilitating fatigue and neurologists telling them they would never find the root cause of it all. Ava had four cranial surgeries and two failed external drains, and nearly lost her vision.

“Death was knocking on her door,” Gina said.

Now, 11 years later, Ava has become a leader. She’s undaunted. She joins her mother with RUN and advocates for other families — and hers, too. When Ava learned of her father’s need for a new kidney, she processed it pragmatically. She is a high school sophomore trying to find the strength to study for her Advanced Placement tests, trying to eventually pick a college that will allow her body to function — in a warm climate and adjacent to major research hospitals.

“I don’t want to say I ignored [my father’s] situation, because I definitely didn’t ignore it,” Ava said. “It was more like, ‘Oh, this big thing is happening around me, and I can’t do anything to change it.’ Just this feeling of it being out of my control just leads me to internalizing it, stowing it away in this like big box of other things that I’ve put away. I’ve noticed that I won’t react when I hear that my dad needs a kidney, but if I drop a dish, or stub my toe, I’ll start crying. The sadness and anxiety manifests into smaller things.

“I can clean up a broken dish, but I can’t fix my dad or my mom or my siblings or even myself.”

Around the kitchen counter that night, Justin and Gina gathered the three kids. Yes, they all had PKD, and now they would have to stack one more malady on top of the others.

“I had been sitting in the ultrasound, and I could tell at least one of us was going to have this — or maybe even two of us were going to have this,” Ava said. “I’m not a doctor by any means, but when she was doing the ultrasound on Lucy, I could clearly see the cysts. But now to know that all three of us have it, well … I still don’t know how to deal with that at all.”

After the procedure Tuesday, Justin will be in the University of Utah’s hospital for several days, and doctors will monitor how the kidney takes to his body over the coming weeks. He’ll be home for most of April recuperating, but he’ll be back running the front office sooner than later — and perhaps, he suspects, running even harder with a new kidney. That’s what he has privately started to tell some of his closest friends around the league. The business of the Jazz will still go through him, and he’ll be back running everything, every day, well ahead of the June NBA draft and July free agency.

How the Jazz feel about him is how his colleagues around the NBA feel, too. Justin has had two distinctive careers — player agent and front office executive — but a singular reputation.

“He’s brilliant,” Cleveland Cavaliers president of basketball operations Koby Altman said. “He has an incredible motor. And you can trust Justin. You talk about sensitive topics with him, you show your hand a little bit in negotiations, and you know that’s never going anywhere beyond you and him.

“And a lot of the time, you end up talking with him about everything in the world but basketball.”

Whatever his aversion to becoming the story, Justin Zanik knows this now: Those three kids need a clearer path than what exists to get kidney transplants — as do thousands of others. He knows this job, the Jazz and the NBA give him a platform to illuminate it all. They’ve had an arduous path, and it only gets harder now.

In the kitchen that night, he told his wife and children what he’ll be thinking about when they wheel him into surgery Tuesday morning, what he’ll be thinking about when he closes his eyes and then opens them again.

“We’re going to do this together,” Justin said. “We’re stronger together.”