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Adrian Wojnarowski, ESPN
salt lake city — In the days before eating cake for her husband's 49th birthday and boarding a plane to Honolulu for the start of training camp, Gina Zanik stood up. She said her husband, Justin, who is the general manager of the Utah Jazz, has gone eight years without a medical checkup, and she will go eight more hours without making an appointment with the team doctor. I swore.
She told him that he looked tired and thin. The long gap in physical ability felt like an anvil was hanging over them. Justin retorted as usual. Late summer included scouting trips to Japan, the Philippines, and Australia. Trades; Games; The never-ending NBA front office calendar.
“Why don't I look a little tired?” he answered.
Gina had been getting his checkups for years, but this one felt different. Justin knew the steely look in Gina's gaze and knew his resistance was futile. For 15 years, he watched her fight for her family's health and her life.
Gina is the co-founder and executive director of Rare and Undiagnosed Network (RUN), an advocacy organization with a tragic and heroic mission. From hospital administrators to insurance companies to Congress, Gina and her children Eva, 16, and Oscar, who, like her, are living with unanswered questions and the painful symptoms of autonomic neuropathy. She has been advocating for her children, Lucy (14 years old) and Lucy (12 years old).
This condition is caused by nerve damage that affects the body's automatic functions such as temperature regulation, blood pressure, and digestion. Neither Gina nor her children, who were infected while giving birth to Eva in 2007, have received treatment. There is no possibility of cure. Sleep is the only thing they've discovered that helps in this never-ending diagnostic journey.
Gina has spent all of her motherhood pursuing unanswered and complex medical questions, but her husband has been too stubborn to get his own answers.
There are benefits to leading an NBA team. One is access to immediate medical evaluation and near-instant results. Justin, along with Jazz team physician David Petron, set a medical exam for September 28, 2023. The Xaniks were celebrating Justin's birthday on Oct. 1, the night before a training camp trip to Hawaii, when they received the results.
“You have kidney failure,” Dr. Petron told him.
Justin's diagnosis with polycystic kidney disease (PKD), which means his kidneys only have 14% capacity, didn't come out of nowhere. Research shows that PKD, a collection of cysts that grow on the kidneys and eventually cause them to lose function, has a 50-50 chance of being passed on to children. And the Zanik family has a deep history with PKD, including Justin's father, Phil, who will celebrate the 21st anniversary of his successful kidney transplant on Friday.
“It was always in the back of my mind,” Justin said. “The whole time I knew there was a 50% chance. But I always felt okay. I was always self-diagnosing myself.”
In early October, it was revealed that Justin needed a kidney transplant, and that he needed it right away to avoid dialysis. He had to register with the National Kidney Registry and be placed on the donor list. Next, he had to have his family and friends test to see if they were a match. But his own family has so much kidney disease that it's unlikely anyone he knows will be a match, so his best chance of getting to the top of the transplant list is to find a friend or acquaintance, a so-called Good Samaritan. Ta. Becoming a living donor. Basically, you can have someone donate a kidney to a national bank for a chance to move up the list and be paired.
Now, this triggered something that made him very uncomfortable: asking for help, asking for attention.
“I'm a fixer at heart,” Justin said. “My job in Jazz, my role with my family, I mean… [player] Been an agent for 15 years. Fixed a lot of things—. I'm the one to help. I am the one who should take care of everything. I didn't really know how to ask for help, but I had to get through it.
“I knew I had to get through it.”
When owner Ryan Smith was told that, CEO Danny Ainge and coach Will Hardy felt bad. These are his four leaders of the franchise, a unique collegial decision-making group. Smith has a guiding principle: to give his all to the franchise. “But it also means we are fully committed to our staff. I want to make sure Justin understands that no matter what he needs, we will support him.” We let them,” Smith said.
In every blockbuster Jazz trade that Justin engineered in his GM job, from Donovan Mitchell to Rudy Gobert, it was his preference to make the owners, CEOs and coaches public testimonials. Most of all, the relentless nature of his GM's grueling efforts while overcoming the bewildering illness of his wife and his three children inspired him to serve others long ago. I was supposed to.
Hardy watches as Justin wanders from office to office at the Jazz's practice facility, stopping by to encourage staff to open up about whatever his leadership needs. Bringing them together to share his kidney prognosis hit him hard. Justin has about 100 people in his head that he is responsible for every day. You could see what was on many people's faces when he broke the news to them. “What will happen to me if Justin leaves?”
“I'm going with you,” Justin told everyone. “it's okay”
Nothing moved him more than the number of staff members who volunteered to be kidney donors and take tests to see if he was a good fit.
“He’s always been a connection between people,” Hardy said. “He's a guy who makes everyone else a star even though he holds the title of NBA GM. He's one of the least anxious people I've ever met in an industry where there are a lot of anxious people. I think it was difficult for him to share this with people because he knows the attention that comes with it and he doesn't want that. ”
Even though running an NBA front office may give Justin faster access to physical testing, it has no impact on his ability to be on the front lines of the University of Utah's living donor program and the National Kidney Registry. There wasn't. His health helped him. So did a group of motivated relatives and friends who were also testing themselves for the game.
Over the winter, a solution presented itself to Justin. Geoff Hart, husband of Gina's childhood best friend Chrissy, passed the screening process and became eligible to donate a kidney to the National Register. This allowed Justin to move up the list, find a match, and set the transplant date for April 2nd.
Whatever remedies existed, Justin and Gina knew that Eva, Oscar, and Lucy also had to be tested for PKD—there was a 1 in 2 chance that PKD would be passed on to each of them. there is a possibility.
As the children were examined one by one, Gina watched as the ultrasound technician retrieved images of the children's kidneys. At the same time, she searched the internet on her phone to see what the cysts looked like and it quickly became clear that they matched real-time images of her children.
The technician was able to watch Gina interpreting the ultrasound results herself. In that room, they bonded over the woman sharing that she too had previously donated her kidney in an act of a good Samaritan. Although she wasn't allowed to formally share her children's results, it was clear to Gina what she was seeing.
As the family left, the technician, feeling devastated, simply said, “I will pray for your husband on April 2'' with a choked breath.
They stopped at McDonald's for milkshakes on the way home just as the test results arrived on Gina's cell phone. Another family meeting was looming in the kitchen. As it turns out, these are advanced forms of PKD, and Eva, Oscar, and Lucy will need to undergo transplants by the time they are 30, and likely several times over the course of their lives.
“It's incredibly unfair,” Hardy said. “Have they not dealt with enough? But they deal with it very gracefully and positively. They don't complain. They don't want people to feel sorry for them. I don't know how to do it – that's the problem.'' Amazing strength. ”
When Eva was five years old, her hands became red, then her limbs became red, and she soon became unable to regulate her body temperature. She had severe migraines, debilitating fatigue, and her neurologist told her it was impossible to find the root cause of it all. Eva underwent four cranial surgeries and two failed external drains that nearly cost her her vision.
“Death was knocking on her door,” Gina said.
Now, 11 years later, Eva is a leader. She is undaunted. She joins her RUN with her mother and advocates for other families, and her family. When Eva learned that her father needed her new kidney, she handled it realistically. She is a sophomore in high school and is trying to gain strength to study for her Advanced Placement test. She is ultimately choosing a university where she can function with a warm climate and adjacent to a major research hospital.
“I don't want to say that I ignored it. [my father’s] “It's not like I ignored the situation,” Eva said. “It's more like, 'Oh, this big thing is happening around me and I can't change it.' '' he said. Just this feeling that it's outside of my control, I internalize it and I put it away in like this big box where I put everything else away. I've noticed that when I hear that my dad needs a kidney, I don't react at all, but if I drop a plate or stub my toe, I start crying. Sadness and anxiety appear in small ways.
“You can clean up broken dishes, but you can't fix your mom, dad, siblings, or even yourself.”
That night, Justin and Gina gathered their three children around the kitchen counter. Yes, they all have PKD and now they have to layer one more disease on top of the others.
“I was sitting in the ultrasound room and I could tell that at least one person was going to have this, or even two people,” Eva said. “I'm not a doctor by any means, but when she gave Lucy an ultrasound, the cyst was clearly visible. But now that I know all three of us have it, well… …I don’t know yet.” How on earth are we going to deal with that? ”
After Tuesday's surgery, Justin will remain at the University of Utah Hospital for several days, and doctors will spend the next few weeks monitoring how the kidneys affect his body. He'll spend most of April recuperating at his home, but sooner or later he'll be back in front-office duties – and maybe even harder with a new kidney. He doubts that. It's something he secretly began telling his closest friends around the league. The Jazz's business will continue to be run through him, and he will return to all day-to-day operations ahead of the NBA Draft in June and free agency in July.
How the Jazz feel about him is echoed by his NBA colleagues. Justin has had a distinct career as a player agent and a front office executive, but his reputation is unique.
“He's a great player,” said Koby Altman, president of basketball operations for the Cleveland Cavaliers. “He's got great drive, and Justin is reliable. You talk to him about sensitive topics, hold out a little bit in negotiations, and know that it's never going to be beyond you and him.” I know.”
“And a lot of times I end up talking to him about everything in the world outside of basketball.”
Whatever his aversion to becoming a story, Justin Zanik now knows this: These three children, like thousands of others, will receive kidney transplants. We need a clearer path than the existing one. He knows this job well, and the Jazz and NBA have given him a platform to reveal all of that. They've had a difficult road so far, and now it's even more difficult.
That night in the kitchen, he told his wife and children what he was thinking about Tuesday morning as he was being wheeled into surgery in a wheelchair, what he was thinking when he closed his eyes and opened them again. Ta.
“Let's do this together,” Justin said. “We are stronger together.”
