What Would Happen | Page 54

After being cooped up in the house for most of his life, Alex Pidkalyuk now spends as much time as he can outside. TRANSPLANT PROGRAMS THE DIFFERENCE A DAY MAKES ALEX PIDKALYUK GOT A KIDNEY AND LIVER TRANSPLANT SIMULTANEOUSLY Meet Alex The transplants were scheduled to take 12 hours. Doctors at Children’s Colorado did both in six. Alex Pidkalyuk lifts up his shirt to show his thick scars: one across the top of his belly, one down the side, the result of a simultaneous liver and kidney transplant last year. He calls them battle scars, and he insists he wasn’t afraid. “He was scared,” says Karina, his older sister. “The day he had surgery, then he was scared.” Alex smiles and shrugs, a baby-faced 14-year-old with hair wet-combed as neat as only his mother could have combed it. “I don’t know. I was on laughing gas the whole time.” Alex was born with Autosomal Recessive Polycystic Kidney Disease (ARPKD), a rare form of the disease that manifests only when both parents are carriers, more aggressive than its more common genetically dominant counterpart (see “Doing Our Best,” p. 48). By the time of the transplant, cysts had so wrecked his kidneys that they’d effectively ceased to function. Cysts involve the liver in about half of ARPKD cases, and Alex’s liver — an organ that weighs about three pounds in healthy adults — had swollen to a massive 10 pounds. More than three times its normal size, it was crushing the rest of his organs. “Of all the kids I’ve taken care of over the years,” says Melissa Cadnapaphornchai, M.D., Alex’s pediatric nephrologist at Children’s Hospital Colorado, “Alex’s liver was the most impressive.” “He had a really big, pregnant stomach,” says his mother, Nataliya. “He always looked greenish, like seasick. He slept all the time.” Doctors always knew Alex had ARPKD; they expected it. Given that Nataliya and her husband Aleksandr both carry the disease, one in four of their children were likely to inherit its recessive form. Three of the couple’s eight children were born with it. Two of them, Karina’s older sister and younger brother, passed away soon after birth in Ukraine. Alex, their fourth, was born in the U.S. From birth, it was understood he’d need a kidney transplant someday. “The liver was news,” says Nataliya. Waiting for a transplant can take a long time. Alex made due on a cocktail of medications, some 20 pills two times a day. When a donor finally did become available, the two transplants were performed back-toback by Children's Colorado surgeons Fritz Karrer, M.D., and Michael Wachs, M.D. The procedure was schedule