To a stranger, Isaac Brown looks like a typical 18-year-old.
He likes basketball, his dog and hanging out with friends. He’s smart and motivated, having graduated from Myers Park High School in June with top grades while also participating in school clubs, volunteering and working a part-time job.
But an invisible illness lands him in Levine Children’s Hospital multiple times every week.
Isaac has chronic kidney disease, treated by dialysis. His medical care takes a huge chunk out of his time and energy — he goes to the pediatric dialysis unit every Monday, Wednesday and Friday, staying for hours at a time to receive the treatment that mimics kidney function but leaves him exhausted. Just going to class was no easy task.
“It’s a lot of responsibility, especially for a younger kid too who’s on dialysis,” Isaac said. “It’s a lot of hard work and dedication.”
Isaac has been on dialysis since he was 16, all while maintaining the break-neck schedule of a high schooler aspiring to attend college. He dreams of many of the same things that his peers do — he wants to succeed in undergrad, become a doctor and have a family someday.
But above all, he wants a new kidney.
A lifelong battle
Jamie Brown was four months into her pregnancy when doctors discovered something was very wrong. An ultrasound revealed bladder and kidney abnormalities in her unborn child.
“It was very devastating,” Jamie said. “I was like, ‘How could this happen during utero?’”
A surgeon operated in utero to improve bladder function, but Isaac had chronic kidney disease from the moment he entered the world.
Chronic kidney disease often doesn’t present visible symptoms and is rare in children. From 2014 to 2016, about 104 per million children and adolescents were being treated for end-stage kidney disease in the U.S., according to the Centers for Disease Control and Prevention.
By the age of 4, Isaac was old enough — and his kidney function low enough — to get a transplant. He received a kidney from his father, Will.
For Will, the decision to donate his organ to his son was a no-brainer.
“My recovery and my situation for me was an afterthought,” Will said. “We just knew that this was a big step for him.”
Jamie said the transplant gave Isaac a “second chance at life.” He could play sports, go to school and spend time with friends like other kids.
But it wasn’t a smooth ride. He had to take more than a dozen medications — including prednisone, which made him gain weight — and drink 80 ounces of water every day. In middle school, he gave himself daily shots of hormones to encourage his growth, often stunted in children with his condition. And he and his mother had to constantly educate everyone from preschool teachers to high school counselors who didn’t understand his disease.
When Isaac turned 16, he needed a major bladder surgery that put him out of school for two months — and led to the failure of his kidney transplant.
It was a long road to get healthy enough to be placed on the kidney transplant waiting list.
Isaac was quarantined in the hospital for over a week after the procedure. Then, he was mostly confined to his house and kept a catheter bag with him at all times for months, adding to his pain and discomfort. And he started dialysis treatments, which he hasn’t stopped ever since.
“That was stressful at the time, having to walk with a bag, feeling in pain walking up to the dialysis unit,” Isaac said. “It was a difficult process having to transition over to having surgery and doing dialysis at the same time.”
And he had to give up something he loved — sports. He once competed in everything from basketball to bowling, but he didn’t have the energy anymore.
Isaac found refuge in one thing: schoolwork.
‘Like running a marathon’
He could barely move from the couch during the first weeks of his recovery, but he stayed on top of his work with the help of a homeschool teacher. He said focusing on assignments helped him stay positive during those difficult two months.
Since then, dialysis has become part of Isaac’s routine. During the academic year, he would go to school in the mornings on Mondays, Wednesdays and Fridays, then head to the hospital for dialysis treatments that lasted four hours each time.
Susan Massengill, Isaac’s pediatric nephrologist at Levine Children’s Hospital, said most of her other pediatric dialysis patients sleep or play video games during treatment since it zaps their energy. But Isaac always chooses to work on school assignments during his dialysis sessions, waiting to rest until he gets home.
“There were some days where I would feel exhausted and not want to go to school, but I pushed through and told myself that I had to do it and made sure I got my work done,” Isaac said.
This dedication led to success in the Career and College Promise dual enrollment program, which allowed Isaac to earn college credits from Central Piedmont Community College during his senior year.
“I don’t think I can impress upon someone enough the accomplishment of how he graduated, being a dialysis patient,” Massengill said. “Every session of dialysis is like running a marathon.”
Isaac strove to be an active student in and out of the classroom. Before he graduated, he shadowed a pharmacist and participated in the Young Black Leadership Association and a group called HEROES, which helps prepare high school students interested in healthcare careers.
He also gives back to the hospital that has deeply influenced his life. He’s volunteered for years with Levine Children’s Hospital’s Teen Advisory Council, which strives to make hospital visits more comfortable for pediatric patients and their families.
And his pediatric nephrologist wants him to become a mentor for patients at Levine, after seeing his success in counseling an anxious young boy through a bladder procedure.
“To help others and give back to others in the community — it’s really who I am,” Isaac said. “I want to make sure that not only me, but other people succeed as well.”
But between strict diet and fluid restrictions, frequent self catheterization, daily medications and coordinating around dialysis sessions, Isaac had to plan his life meticulously to accomplish what he did. Managing his disease complicates everything from spending time with friends to going on vacation.
“Isaac makes it look really easy, but this is not an easy life,” Massengill said. “It’s a very isolating life.”
Since graduation, Isaac has remained active by working at Chick-Fil-A and taking a CPCC summer school class. He’ll take a full course load at CPCC in the fall and plans to transfer to UNC Charlotte after a year and half.
Inspired by the doctors at Levine, Isaac wants to attend medical school someday to become a pediatric physician.
But first, he hopes to get a new kidney.
A hopeful future
Isaac has been on the deceased donor waiting list for over two years. Massengill said 50% to 60% of patients on the deceased donor kidney list receive transplants within three years.
But Isaac’s rare blood type — B negative — and his high level of antibodies from his prior transplant could result in a higher-than-average waiting time.
With 120,000 people on the kidney transplant list and not enough deceased donors to meet the need, Massengill said Levine promotes finding a living donor for pediatric kidney transplants. She said the amount of time a patient can live on dialysis depends on other co-existing health factors, but patient survival and quality of life is superior with transplant compared to dialysis.
With the deceased donor list, only patients with blood type B are considered for Isaac. But living donors with both blood types B and O could potentially be matches for him.
“It’s a waiting game,” Isaac said. “I’m just hoping and praying that I’ll be able to get a kidney soon.”
But, not one to do nothing while he waits, Isaac plans on staying busy with classes. He’ll start shadowing a surgeon soon and wants to work at a pharmacy again in the near future.
And he plans to continue educating others about his illness.
Isaac, his family and doctors also hope that by raising awareness, people might consider being a living donor.
Jamie said she thinks many people don’t understand the process of organ donation — and might not know it’s possible to live with one kidney. Since she isn’t a blood type match, Jamie hopes that someone — even an anonymous donor — will give a kidney to Isaac.
When she talked about that possibility for her son, Jamie held back tears.
“I’m optimistic, hopeful, praying,” she said, “that one day when he gets a transplant, it will open up his life a lot more and he can be free.”
Support for Isaac
Want to learn more about becoming a living donor? Visit https://atriumhealth.org/medical-services/childrens-services/childrens-specialty-care/pediatric-transplant or call the Atrium Health Living Donor Office at 704-355-3602. Interested in making a donation to the National Kidney Foundation? Visit https://www.kidney.org/.