As Caitlin Clark sits in a hospital bed for her dialysis treatment, a nurse graduate helps her study algebra.
Clark, 20, wants to take the ACT this summer and then, hopefully, go to college. This study session is a regular occurrence for Clark, who has been a dialysis patient at The Children's Hospital at OU Medical Center for about four years.
As a patient at a children's hospital, Clark receives care, tutoring and even art lessons from doctors and nurses that she knows and trusts.
But that will soon end. For the past few weeks, Clark has been in a program called Transitions. The program helps teenage and young adult patients with chronic diseases transfer from The Children's Hospital to an adult facility. This is a big step for any juvenile patient.
“We all know them like they're our own friends, children and families,” said Clark's doctor, Dr. Olivera Couloures. “We're very close, and then they get into an adult unit with 150 patients and rotating doctors who don't know too much about anything about them, other than their labs, and it's a loss of that major support.”
Dialysis is a treatment for people whose kidneys aren't functioning properly. Dialysis filters a patient's blood, ridding the patient of harmful wastes, extra salt and water, according to the U.S. National Library of Medicine.
Children on dialysis are typically at the hospital three days a week for four hours, said Noel Jacobs, a pediatric psychologist at The Children's Hospital. They miss a lot of school, sometimes the entire day because they're so tired after dialysis. Staff at The Children's Hospital have seen some children who couldn't read.
“These are very strong kids, and they're resilient, but they face challenges that other children that don't have kidney disease don't have to face,” Jacobs said.
Her case is complicated
Many teenage or young adult dialysis patients at The Children's Hospital don't continue dialysis because they receive organ transplants and no longer need to be on dialysis.
But for Clark, finding a donor is more complicated. Clark has Alagille syndrome, an inherited disorder in which a person doesn't have enough bile ducts in the liver, according to the National Digestive Diseases Information Clearinghouse.
It's a complex disorder that can affect other parts of the body, including the heart, kidneys, blood vessels, eyes, face and skeleton, according to the clearinghouse. Alagille syndrome occurs in about one in every 70,000 births and is equally common in boys and girls.
For the past four years, Clark has been waiting for a kidney transplant. Finding a donor match for Clark is more complicated because she has already had an organ transplant — a liver transplant when she was 7. Because of this, her body has created antibodies that make it more difficult to get a second organ.
It's not impossible — it just means it has to be a really good match, Couloures said. This means Clark will continue dialysis after she leaves The Children's Hospital.
Thanks to Transitions, before Clark leaves, a team of doctors and nurses will teach her more about her disease.
Clark won't leave until the hospital staff on the Transitions team all agrees she's ready. To be “ready,” Clark must be able to explain what her medications are and how often she must take them. She must know who her doctor is, and she must be able to understand her lab results.
Children's Hospital Boston, North Carolina Children's Hospital and Cincinnati Children's have similar programs for their chronic-disease patients. The point of these transitional programs is for young adult patients to leave confidently and feeling comfortable about the fact that they're now in control of their medical decisions.
“I'm used to my dad taking care of everything, so it's pretty crazy with me trying to do it all,” Clark said.
The doctors and nurses at The Children's Hospital started Transitions after realizing that leaving the hospital was overwhelming for the young adult patients. Patients were fearful and became stagnant, not trying to move out of their parents' homes or find jobs.
Jacobs and other hospital staff have talked to Clark about her anxiety over leaving. She has learned a lot in the past few weeks. For Clark, a first step will be making an ACT score high enough to let her go to St. Gregory's University in Shawnee.
And she wants to move into an apartment — either in McLoud, where she grew up and where her parents live, or close by — just far enough to have some freedom but still have family support.