Two weeks before his second birthday, Lucas Ocampo’s eyelids swelled up.
His mom, Jeanette Ocampo, took him to the pediatrician, who diagnosed pink eye. Then Lucas’ belly swelled up and he stopped having wet diapers. Ocampo, who grew up in Highland Park and still lives there, has an older son and knew this wasn’t normal. And it definitely wasn’t pink eye.
A trip to Lurie Children’s Hospital and a team of specialists later, and Lucas received a diagnosis of focal segmental glomerulosclerosis, FSGS for short. The disease, which affects mostly boys, scars the kidneys, causing them to fail.
Fast forward four years and Lucas has had both his kidneys removed. Next week, he’ll receive a new one. His mother is the donor. It will hopefully start working normally, allowing Lucas, now 6, to become a healthy little boy once again.
“It’s like we’re there, we’re almost there,” Jeanette Ocampo said. “I’m excited, nervous.”
Some children grow out of FSGS. For the first 10 months, that’s what Ocampo hoped would happen with Lucas.
He was put on immunosuppressants, which can sometimes hasten the disease’s departure. But it also left him susceptible to every disease floating around his daycare. He caught everything from bronchitis to swine flu. There were lots of nights in the hospital.
And each morning, Lucas had to have his urine tested to see if his kidneys were starting to work correctly. The good news was that, at 2 years old, he taught himself to urinate in a cup to avoid a catheter. The bad news was that the tests never came back with good news.
In 2010, he had a biopsy that showed scarring on his kidneys, the sign that the disease was here to stay. At that point, the family knew he would need a new kidney in four to five years.
Learning to live with FSGS
But first came dialysis.
Because Lucas’ kidneys weren’t functioning properly, he needed to be hooked up to a dialysis machine to do the work for him.
Beyond the obvious difficulty of keeping a little boy still for hours at a time, his dialysis catheter caused lots of problems. He got staph infections, a fungus grew inside the catheter, and one time it came out. And even when it worked well, it has a finite life span and needed to be replaced. Lucas had half a dozen different catheters put in during the last two and a half years.
The dialysis is rough on the whole family, too. Lucas’ brother Danny, 11, has to get up at 5:45 a.m. three days a week to go to his grandparents so Lucas can go to dialysis.
And kidney disease causes all sorts of other problems. Lucas has high blood pressure, thyroid problems, needs a feeding tube for supplemental nourishment and is on blood thinners. It has also stunted his growth. At 6 years old, he’s only 30 pounds.
But, Ocampo joked, “I’m only 4’11’’. It’s not like I’m going to produce a basketball player.”
The need for a donor
By last year, it became clear that his kidneys were failing quickly and he needed a transplant. His father, who is divorced from Ocampo, offered to be a donor and was a match.
But Lucas needed to be infection-free and healthy in order to have the operation. The complications with his catheter kept causing delays. Lucas’ dad decided it wasn’t going to happen and he chose not to be a donor, Ocampo said.
She immediately raised her hand instead.
“It wasn't a question; my son needs my kidney,” she said of her decision. “If you knew you could save your baby from dialysis, you would do it. If you could save your baby from anything, you would do it.”
She had numerous tests to see if she was a match, one of which was a blood test. Lucas coached her through it.
“He gave me a pep talk: It’ll only pinch. It will only hurt for a little bit and then you’ll be fine.”
Preparing for the transplant
Last month, Lucas had both of his kidneys removed.
On Monday, he’ll again go in for surgery at Lurie Children’s Hospital. Across the street, his mother will also be in an operating room, where doctors will remove her right kidney. It will be placed in a cooler and brought to Lucas’ operating room, where it will be placed into his abdomen.
Ocampo’s concerns for that day focus on Lucas, who has never had a procedure without her at his side.
“I have always been there for every minor procedure,” she said. “Not to see his little face or hug him or kiss him and tell him everything will be OK the day of the surgery — that will be rough.”
Ocampo decided not to put Lucas on an organ donation waiting list for two reasons.
First, “if I could do it, why would we do a wait list?” she said.
Secondly, he’ll likely need to go on a waiting list later in life when his donated kidney inevitably fails.
But, for now, Lucas is eager to get his new kidney.
“He knows he’ll be able to grow,” Ocampo said. “He’s really excited.”
Talking about organ donation
Ocampo shared her story in part to raise awareness about organ donation.
She wishes she had known more about it, particularly kidney donation, when Lucas got sick. It would have saved her uncountable moments of stress and despair. She said she cried for the first year.
Knowing that a donated kidney could save her son was powerful.
“If more people knew how with kidney disease someone could help with an organ, I think people would help,” she said. “But nobody talks about it. You only need one kidney to survive.”