A successful kidney transplant is supposed to bring a better life to the recipient. But in the case of Janson Campbell and his mother, Julie — who last month donated a kidney to help her son — the benefits are twofold.
“It’s just a new beginning, absolutely,” Julie Campbell said. “And I just feel that even at my age, and I’ve had a full life, I feel like it’s a fresh start for me, too, emotionally. There’s an attitude change. We can both progress now.”
Now 16, “Handsome” Janson Campbell was diagnosed with kidney disease at the age of 3. It was easily managed for a time, but his condition worsened a few years ago when it developed into focal segmental glomerulosclerosis (FSGS), a serious kidney condition that can only be treated with dialysis or a transplant.
At first, it was believed that Janson had acquired the condition from a virus, meaning that a transplant would be ineffective because the FSGS usually returns within 24 hours after surgery, damaging the new kidney.
But in January 2017, doctors at Lurie Children’s Hospital in Chicago determined that Janson’s FSGS was caused by genetic mutation. That cleared the way for a transplant.
“I never thought for a minute that they would want me to be his donor because I was his primary caregiver,” said Julie Campbell, who is 52.
But they asked her to undergo testing. She did and found that she was an exact match.
After more testing, they learned on May 8 that mother could donate to son. The surgeries were scheduled for July 8 — Julie’s at Northwestern Memorial and Janson’s down the street at Lurie Children’s.
“I’m very spiritual and there was a lot of spiritual about this. Eight is the sign in the Bible for new beginnings and that’s what we have,” she said. “And I tell him that there are big plans for him. I know that God has a purpose for him, a really strong purpose for him.”
‘I feel way better’
The transplant was, by all measures, a success. Both Janson and Julie were home in Rantoul within three weeks. Janson attended high school band camp last week, played basketball with friends and is making plans to be a member of a swim team.
At one time, he was down to 79 pounds, but he’s started adding weight to his 5-foot, 2-inch frame. One of the first excursions he took upon coming home was to the county fair.
“He couldn’t wait to go to the fair Friday night and eat a corn dog. That’s all he talked about,” said his mother.
“I feel way better,” Janson said. “I have more energy and I’m not as tired as I was.”
His depression, he said, “it’s gone.”
Janson’s improvement is marked, particularly from about a year ago, when his kidney function dropped to 11 percent and he began dialysis.
“We had to do peritoneal dialysis,” his mother said. “Otherwise, we would have to go up to Lurie for three or four hours a day several times a week.”
But the peritoneal dialysis, which was done at home but required a machine — a catheter that ran into Janson’s abdomen — and lots of equipment and supplies, proved just as challenging.
“It was eight hours a night, and he would have the equivalent of six 2-liter bottles of pop in and out of his little abdomen every night,” Julie Campbell said. “He never told me for two months that he wasn’t sleeping until it was over in the morning.”
Later, they started using melatonin to help Janson sleep. But that interfered with school.
“It was very hard and he was very depressed,” said his mother. “He hardly ever went to school. And he was scared of germs. Until I was able to get an at-home nurse, he was home every day by himself. By himself every day, all day long in his head.
“One day, I came home and he had a bad headache and the house was dark and he hadn’t gotten out of bed. I told myself, that’s it. I’m done. I took off work until I got a nurse approved. He had been hurting so bad that he couldn’t even call me.”
‘Attitude of gratitude’
Julie’s new start has been no less profound, if less visible.
She’s suffered far more than her share of life’s difficulties, from a troubled childhood to family disappointments to substance abuse to failed relationships and more. Somehow, she’s stayed positive.
“Attitude of gratitude, that’s what we say,” she said. “My daughter, who is 25, keeps thanking me for giving her brother a second chance. For me, this is just like I’ve finally lived to see my kids understand my love.”
She’s rekindled relationships, some of which had become estranged, with relatives. Friends have stepped up to support her and Janson. More than 100 people wore specially made T-shirts on July 8 that read, “Handsome Janson Has Kidney Courage” and forwarded photos to donor and recipient. More than 25 people, including a high school classmate, have volunteered to be a donor to Janson if Julie’s kidney is rejected, something that is always a possibility.
“It’s nothing short of a miracle,” she said.
Even with a successful kidney transplant, there are no guarantees of long-term success, she noted.
“They tell you that a transplant is not a cure. (The kidney disease) could come back but it hasn’t so far,” she said. “So now, it’s just one day at a time. And so far, it’s a very good day every day.”