Eighteen-year-old Maggie Mansfield, a communications major at Boston College, is a two-time double-lung transplant recipient — once, at age 4, due to a condition called pulmonary hypertension in which blood pressure in the arteries of the lungs is abnormally high, and again at age 7, when her body rejected the first transplant. Since then, Maggie has remained relatively healthy due in part to her strict medication regimen.
“Timing is the most challenging part of taking my medications,” Maggie says. “As I get older, I get busier. It’s not always easy to stop what I am doing and take my pills, but I try to keep my timing the same so I don’t throw off my labs.”
Medication adherence is critical to the long-term health of an organ recipient. But taking upwards of 20 medications per day is often overwhelming, particularly for adolescents and young adults as they become more independent.
“I equate it to learning how to drive a car,” says Kristine McKenna, PhD, a psychologist in the Boston Children’s Hospital Pediatric Transplant Center. “We don’t just toss over the keys. There are a lot of steps to learning — getting a learner’s permit, practicing driving with a parent. And, again, we don’t just send them out to drive across the country when they get their license. There are a lot of steps along the way.”
Drivers Ed: Learning the basics
Maggie began taking responsibility for her medications when she was 12. “I was young enough that my parents would still remind me, but old enough to know what I was taking and why.”
Dawn Freiberger, RN, MSN, Boston Children’s Lung Transplant coordinator, says the key to success is starting early, along with consistent parental involvement.
“It needs to be a very gradual process,” says Freiberger. “When kids are in their early teens they should be filling their pill box with their parents and start learning what all the medications are and be able to identify them.”
The pillbox is Maggie’s technique of choice. She counts her pills in a tray at the beginning of every week, that way if she’s busy she can just grab the container and go.
“I have also gotten in the habit of setting alarms on my phone, so I don’t forget by accident,” Maggie says.
Learner’s Permit: Practice makes perfect
Sixteen-year-old Nicole Poitras, a liver transplant recipient, views medication adherence as part of a daily regimen, as simple as brushing her teeth.
“I get up for school in the morning, and before I leave I take my medicine. It is so routine I don’t even think about it. My mom doesn’t even have to ask.”
But every child is different. Jennifer Gilarde, PharmD, a transplant clinical pharmacy specialist, says many teens struggle with ‘superman syndrome’ — feeling like they can do whatever they want, when they want. “They want to be like their peers, which means they don’t always want to take their medications when they are supposed to.”
Freiberger sees this as one of most challenging issues when it comes to adherence, particularly for lung transplant recipients.
“A lot of patients, with cystic fibrosis for example, who have been sick their whole lives get a new lease on life after transplant. They finally feel like everybody else, and they want to be like everybody else, without worrying about taking medications while they are out with their friends.”
Driver’s license: Taking control
Maggie has found it helpful to explain to her friends when and why she has to take her pills. “That way, it’s not awkward to take them when I’m out, and they can remind me if I forget.”
There are many different ways to approach adherence. One patient may prefer a simplistic list, and another may find it motivating to use a web-based program or an iPhone app. Many of the apps are geared towards adolescents with built-in features that phone or message a parent when the individual has not responded to a reminder.
“There is no one-size-fits-all approach,” says McKenna. “The key is finding what works for each individual and promoting partnership and ownership. They can’t control the need for a transplant, but they can help to maintain their health afterwards.”
The Transplant team works with each adolescent and family when it is time to start the transition and develop tailored plans for each individual. If you or your child is having challenges with adherence, reach out to your transplant coordinator.