Imagine driving 162 miles, only to spend four hours hooked up to a kidney dialysis machine. Now imagine repeating this routine four days a week for more than a decade. This was the reality for Adrian, a
15-year-old patient at Children’s Hospital Colorado.
Adrian was born nearly two months premature, so his kidneys and bladder never fully developed. At age 2, he started home dialysis, a treatment that does what impaired kidneys can’t: it filters toxins from the blood.
He did this day after day, until an infection scarred part of his abdomen. After that, he and his mother, Alicia, had to make the 3-hour roundtrip drive from their Fort Morgan, Colo., home to Children’s Colorado on the Anschutz Medical Campus for dialysis treatment.
This went on for two years until at last Adrian was matched to a donor kidney. His family was overjoyed, but just two days after the transplant, Adrian’s body rejected the new organ. He was added back on the wait list for a new kidney and restarted dialysis treatment. This went on for another decade.
During that time, Adrian missed most of childhood, spending a majority of his life at the hospital or traveling there for treatment.
"We'd get calls like, ‘We think there's a kidney for him,’ and then they'd go, ‘No, it's not a match,’" recalls Alicia. "It was so hard and stressful. I'd think, ‘Is it just going to be like this forever?’"
By age 14, Adrian was just a couple of inches taller than his 8-year-old brother. Dialysis gave him enough time to attend school just once a week. The toxins in his blood and the physical stress of dialysis exhausted him. He spent most of his time asleep.
Meanwhile, accessing Adrian’s blood was becoming a challenge. Ports scarred up and became unusable. Doctors feared that even dialysis wouldn't be possible much longer.
At Last, A Match
Just when Adrian’s family was starting to lose hope, a complete stranger came to their aid. Jaime Bailey, a retired school teacher, saw a notice in her church bulletin seeking a live kidney donor. Two of her fellow church members needed kidney donations. She saw the notice again the next week, and again the week after.
"I thought, ‘Why is nobody donating a kidney?’" she recalls. "Then I thought, ‘Well, maybe I'm the one who's supposed to do it.’"
A week later, she began a battery of tests and evaluations at the University of Colorado Hospital (UCH). She wasn't a match for either of the people at her church, as it turned out. But the hospital asked if she would be interested in anonymously donating to someone else — perhaps a child or teen at Children's Colorado?
Jaime agreed, and soon found out that she was a potential match to a patient at Children’s Colorado. That patient, as she later learned, was Adrian.
“This is what I’m supposed to do,” Jaime recalls feeling.
A Successful Transplant
Jaime wasn’t an exact match with Adrian, so doctors had to use a process called desensitization to help Adrian’s body to accept the kidney. They essentially had to wipe out all of Adrian’s antibodies that would attack the new organ – meaning temporarily wiping out his immune system. It would put him at risk of infection in the short term, but it was a small price to pay for a young man who had already missed out on so much.
Nearly 100 specialists were involved in Adrian’s transplant – nephrologists, pathologists, hematologists, immunologists, anesthesiologists and surgeons. The dedication to ensuring Adrian had a successful transplant was overwhelming – and this time, it was. Within a minute of connecting the new kidney, it started working.
Since the transplant, Adrian has continued to make progress and recently doctors were even able to remove his catheter so he could urinate normally for the first time in his life. “It’s an incredible success,” Dr. Wilcox says.
Adrian is now doing the things he missed as a child: going to school full-time, playing soccer and making friends. His family still makes the drive to Children’s Colorado for follow-up appointments, but they are few and far between.
“I have so much energy,” Adrian says. “I feel great every day.”
A Vision for Surgery at Children's Colorado
To create successful outcomes for more kids with complex surgical needs, Dr. Wilcox has a vision to establish a center for surgical innovation at Children’s Colorado. It will provide surgical care unparalleled in Colorado. It would give Dr. Wilcox and his surgical colleagues the time and resources to lead groundbreaking initiatives and pioneer new ideas and approaches.
Not only would the center help provide the very best care for every patient, it would elevate Children’s Colorado to be a national model for excellence in surgical research and the delivery of care.
“Philanthropy is everything for this vision. It won’t happen without it,” Dr. Wilcox says.
You can help by donating to Adrian’s fundraising page.