Angela Cheff, a nurse, knew something was seriously wrong when her 6-year-old son, Gene, became lethargic and bloated in early June.
"I had noticed he gained four pounds that week," Cheff recalled.
It turned out he had a life-threatening problem.
Her son, Gene Hilson III, was in end-stage renal failure. His damaged kidneys were shutting down.
On Tuesday, Cheff will try to restore her son's normal life by donating one of her kidneys to him. Cheff's left kidney will be removed at a Pittsburgh hospital, UPMC Montefiore, and then driven about 10 minutes to Children's Hospital of Pittsburgh at UPMC to be implanted in her son.
Other family members could have been considered as a donor, but Cheff was a good match.
"I know I'm ready," she said. "I'm young, I'm healthy. Let's just do it."
Not filtering properly
During the first week of June, Gene was alternating between lethargy and acting like a normal 6-year-old at their Niagara Falls home, said Cheff, a licensed practical nurse at Elderwood at Wheatfield, a Niagara County nursing home.
He was also having headaches.
She took him to her pediatrician in Wheatfield, and the nurse there was unable to get a blood pressure reading at first because it was unusually low.
After some discussion, Cheff asked for a urine test on the child. It showed an unusually high glucose reading.
"Something wasn't filtering properly," Cheff said.
The doctor sent them to the emergency room at Women and Children's Hospital in Buffalo, where Gene's blood pressure had switched from being too low to being sky-high.
"Within 15 minutes, they did lab work, got an IV in him," Cheff said. "His creatine, which is a kidney function indicator, was a 13. Normal's 0.1. So basically everything was pointing to kidney failure."
Gene underwent emergency dialysis. A biopsy indicated chronic renal failure.
When Gene's kidneys were biopsied, the organ was so scarred that doctors couldn't figure out what kidney disease the boy has, said Dr. Paul Fadakar, a pediatric nephrologist at Children's Hospital of Pittsburgh at UPMC.
Gene could not be treated other than through a kidney transplant. In the meantime, he's been undergoing dialysis three times a week.
"Living relatives always make the best donors," Fadacar said.
"They want no kid on dialysis forever," Cheff said.
So the decision for a transplant was not in doubt.
"Even before I knew it was chronic, I said, 'Oh yes, this is something I'm absolutely going to do.' There was never a question in my mind," Cheff said.
The cause of the problem with Gene's kidneys has not been determined.
"In African-American children, a primary kidney disease can cause these characteristics," Fadakar said.
Cheff also has a 10-year-old daughter, Noriana Ellison, who has shown no kidney-related symptoms.
Cheff's fiancée, Gene Hilson Jr., was stunned by his son's diagnosis.
"He took it really hard," Cheff said. "He's always trying to be the rock, the strong person of the family."
Cheff said Gene probably will be hospitalized for about two weeks, plus another week staying in Pittsburgh for observation, while she expects to be released from Montefiore after about two days.
"We don't actually remove the (child's) native kidneys. We leave them in," Fadakar said.
The surgeons will be Dr. Armando Ganoza and Dr. Abhinav Humar, he said.
"This is something I have to do. This is something I want to do," Cheff said. "It's not fair for any child to be sick, especially not mine. He's such a sweet, active, fun little boy, not bad at all. It's just not fair."