Third Transplant, New Hospital for Jake

In a perfect world, 15-year-old Jake Strok wouldn’t need  to be concerned with much beyond hanging out with friends, playing video games and, of course, doing his homework. But for Jake, the near future also includes his third kidney transplant, which will be performed at Ann & Robert H. Lurie Children's Hospital of Chicago.
"I wouldn’t go so far as to say he's looking forward to it, but Jake is happy that his next surgery will be at the 'new place,'" says Jake's father, Jim. "He’s taking everything in stride. We knew he was headed down this path for a couple of years now, so it wasn't a total surprise when we found out he needed another transplant."
 
At 6 months of age, Jake was diagnosed with the genetic disorder Denys-Drash syndrome, a rare kidney disorder that is often accompanied by Wilms tumor, a cancerous tumor of the kidneys. A few months later, Jim and his wife, Lisa, were told that their baby needed a kidney transplant. "It just ripped our hearts out to hear that," says Jim.
 
Jim was tested as a potential donor and turned out to be a match. Before the transplant surgery could take place, though, Jake's kidneys were removed and he was placed on dialysis for two months.
 
After successful surgery, Jake spent a month in the hospital under the care of Richard Cohn, MD, an attending physician in the hospital's Division of Kidney Diseases, which is ranked 7th in the nation by U.S.News & World Report. Dr. Cohn is also medical director of the Kidney Transplant Program, which has performed nearly 600 transplants since 1964, making it a national leader in volume.
Jake returned home and subsequently had a relatively healthy childhood, though Jim says that he and Lisa always knew another transplant might be necessary. "A kidney transplant is a treatment, not a cure," says Jim.
 
When he was 8, Jake began to show signs of kidney rejection and organ failure. Six months later, he underwent his second transplant surgery with Riccardo Superina MD, head, Transplant Surgery and co-director of the hospital's Siragusa Transplantation Center, with an organ donated by one of Jim's cousins. Dr. Superina is also the Robert E. Schneider Chair in Transplantation.
 
Once again, Jake returned to normal activity for an extended period of time. Unfortunately, earlier this year, Jake began to show signs of kidney rejection and failure again, and another transplant surgery is on the horizon. According to Dr. Cohn, approximately 10 percent of children who receive a kidney transplant before age 6 will need a second kidney transplant before age 21.
 
"It's exceedingly rare, though, for someone to need more than a second transplant during childhood," he says. "In fact, in 32 years I've had only two other patients who needed a third kidney transplant."
 
Jake's mom, Lisa, was tested as a potential donor, but wasn’t an exact match. Because of that, the Kidney Transplant Team at the Siragusa Transplantation Center enrolled Jake and his mom  in the national United Network for Organ Sharing's Kidney Paired Donation Pilot Program. The program aims to match donors and recipients by directing a donated organ to a different compatible recipient, with the intent that another donor will donate to the first donor's designated recipient. In Jake’s case, the hope is that there is another donor-recipient match that will be identified and allow Jake to obtain a kidney that he may otherwise not have received.
 
With more than 95,000 people waiting for kidney transplants in the U.S., this program offers those on the waiting list a unique opportunity to increase the donor pool and find a match more quickly. In addition, the program offers a number of other benefits. Kidneys from live donors last longer, on average, than kidneys from deceased donors. Additionally, transplant recipients who receive kidneys from living donors generally need fewer immunosuppressive drugs after their transplant.
 
After spending many weeks at Children's Memorial with Jake, the Strok family became intimately familiar with the old facility. While the setting at Lurie Children's is different, Jake will benefit from the care of the same medical team that has treated for him for years.
 
"Dr. Cohn has cared for Jake since he was a baby, and he is just an amazing doctor," says Jim. "Also, Jake has a wonderful team of nurse practitioners – Whitney Stoller, Ashley Voit and Debbie Kunzon."  
 
Jim first visited Lurie Children's during a pre-opening tour. Saying he was impressed would be putting it mildly. 
 
"When you enter the building, it's like walking into the future," he says. "The increased capacity for patients and the all-private rooms are wonderful – not to mention the amazing views and the large screen TVs. As a parent who spent many nights in my son's room at the old hospital, where I often slept in a chair that was not very comfortable, the fold-out beds at Lurie Children's will be wonderful. It's just an amazing facility."