Transitions are a part of life. Becoming more independent, turning 18 years old, planning for college – these are transitions every teenager must face. It’s the gray area between adolescence and adulthood, a time when most teenagers step out from the shadows of their parents and head into the world in search of self-sufficiency. For some, however, this can be daunting, especially when it comes to taking ownership of one’s own health.
For a group of 11 teenagers at Seattle Children’s Hospital who have all at one time or another had a heart transplant, their transition means taking a more hands on approach to their personal health.
They are now old enough to be the drivers of their own healthcare decisions and they are old enough to transition out of Children’s to continue care at adult institutions.
A shift in care
Adulthood, for them, marks a milestone shift from the family-centered care they have become accustomed to at Children’s, to more individual-based care in the adult transplant world. From insurance questions, to fertility questions, these teens will soon face complex matters far from that of a normal teen. This is why the Heart Center team at Children’s decided to implement a Teen Heart Transplant Transition Day.
The special day was designed specifically for teen heart transplant patients who will be transitioning to adult institutions, to answer questions they may have before they step out into the adult world.
“We devised the transition day with the goal of preparing teens for some of the challenges that they might see in adult transplant care,” said Jason Hopper Cruz, a transplant coordinator at Children’s. “Some of the challenges they will face include, accessing medications, knowledge about insurance coverage, reproductive health and family planning. We’ve incorporated all these discussions into the transition day to help them better understand what’s to come.”
Heart transplant patients have unique and multifaceted medical needs, and their health depends on their adherence to a strict regimen of medications and check ups.
Being a teenager without complex medical issues is hard enough. This group will face all the normal demands of transitioning into adulthood, compounded with the risks that come with their transplant.
Why transition day matters
Transitioning out of a children’s hospital may not seem like a major milestone, but studies have shown, specifically for teenagers, the transition can be a dangerous one.
A major concern is nonadherence, in which an individual may decide not to take their immunosuppressive (anti-rejection) medications, or forget to schedule appropriate care appointments, including labs and procedures that check the health of the transplanted organ.
According to a study conducted at Boston Children’s Hospital, teenagers are at a higher risk of nonadherence. In a national review, 9 percent of the pediatric and adolescent heart transplant recipients compromised their health due to medication nonadherence within two years of receiving their transplant. The risk for mortality among children and teens who did not adhere to their prescribed medications was 26 percent within one year and 33 percent within two years.
“Teens want to identify as normal. Sometimes they will start to feel so good they don’t believe they need medication anymore,” said Hopper Cruz. “They will start being noncompliant with taking medications or getting their labs checked, which can lead to rejection. Unfortunately, the outcomes can be devastating.”
Helping a teen understand the specialized healthcare needs they will face in the adult world is vital to ensuring the health and longevity of their transplant.
Helping teenagers live longer, healthier lives
The goal of the Transition Day is to help ensure every child lives a long, healthy life. This year was the fourth teen Transition Day for the Heart Center team, a tradition they will continue to build upon.
“There has been a lot of devotion nationally to transitioning programs,” said Hopper Cruz. “Our Transition Day is truly unique because it’s a collaboration between the University of Washington (UW) and Children’s. Our patients have the opportunity to socialize with their new providers and support one another while learning about the adult care they will receive.”
This years schedule included discussions with the adult care team at UW about social work resources, reproductive health, accessing medication, insurance coverage and career counseling. But for the patients that participated, it was more than just a day of learning and socializing, it was an orientation to the rest of their lives.
“We listened to the needs of our heart transplant patients, and together with UW, created a day to meet those needs,” said Hopper Cruz.
Moving out of Children’s
For Angie Bezhenar and Sophie Kuniholm, both patients at Children’s who are transitioning to UW, the shift to the adult world is a scary one.
When Angie was 6 months old she was diagnosed with Dilated Cardiomyopathy, a disease of the heart that affects the main pumping chamber. Throughout her life her heart continued to grow. Eventually, her heart grew too big, and on Sept. 18, 2011, at 15 years old, she was transplanted with a new healthy heart.
Originally from the Ukraine, English is her family’s second language, and her home is in Alaska. For Angie, who is relatively new to the world of transplantation, the transition out of Children’s is a little intimidating, which is why the transition day meant so much to her.
“My main concern for transferring out of Children’s is probably leaving all of my doctors behind. You really do form a bond with them,” said Angie.
However, leaving the familiarity of Children’s won’t be her only hurdle. She’ll be in charge of scheduling her own appointments with adult clinics in Alaska and will need to remember to take her regimen of medications and refill them as needed. These tasks may not seem complex, but for Angie, whose medications are nearly two hours away from her hometown, she feels anxious about the shift.
For Sophie, she’s more concerned about the change in interventional procedures.
When Sophie was 9 years old she fell ill while vacationing with her family in Lake Chelan, Wash. What the family thought was the stomach flu turned out to be something much more serious. On Dec. 6, 2005, her heart was discovered to have failed and on Jan. 14, 2006, the day before her tenth birthday, she received a new heart.
“It’s scary moving from the kid’s world to the adult world, but the transition day really helped bridge that gap for me,” said Sophie. “Children’s has always been my protection, but the experience helped me realize there will be friendly faces in the adult world too.”
The transition from Children’s will mean new faces, new procedures and a big change for both Angie and Sophie. But thanks to the team at Children’s, they now have a better understanding of what to expect and can focus more on simply being a normal teen.
- Seattle Children’s Heart Center
- Seattle Children’s Research and Advances
- Non-adherence among teenage heart transplant recipients
If you’d like to arrange an interview with Jason Hopper Cruz, please contact Seattle Children’s PR team at 206-987-4500 or at [email protected]