Taking on Transition
Transition. The word alone can send chills down the spine of a cystic fibrosis patient. In fact, research indicates that prior to transition from pediatric care to adult care, most patients have only negative opinions about the concept.
“I don't want to leave all my doctors, and my family at the hospital, but it's a transition I will have to make,” says 18-year-old Brianna.
Change is hard, no question. Many patients echo Brianna's concern about saying goodbye to people who've become more than just doctors and nurses, people who've become family.
Replacing the team you've known for years with someone brand new is understandably nerve-wracking, and takes time.
“You definitely have to re-establish the trust that you had with your other doctors,” says Pete, a 25-year-old cystic fibrosis patient. “I was with the same people for 18 years.”
Patients approaching transition voice other worries, as well, including:
- The challenge of bringing a new team up to speed
- The fear that adult care won't be as “friendly”
- The worry that the adult pulmonologist won't be as experienced with CF-related complications
- The concern that without their parents present, no one will be there to help deal with bad health news
While it may never feel like the right time to make the move, it could be encouraging to know that the anticipation of transition is often much harder than actually doing it. Following transition into adult care, patients frequently find themselves reveling in a heady sense of independence.
That feeling of independence comes, in part, from patients taking over their own healthcare and treatment. Amy, a 26-year-old graduate student, says that her parents made transition easier for her by insisting that she begin taking responsibility for her treatments at an early age.
“Transition can be a rough time; but having to deal only with caregiver transition, instead of having to add the additional burden of transitioning into taking care of my own health and establishing my own medication routine, eased the burden tremendously,” says the future MBA.
There are other ways to ease the anxiety around transition. Here is a list of action steps to consider with your parents, as well as your pediatric and upcoming adult health care teams:
- If you haven't already, take over the self-management of your CF
- Begin discussions about transition long before it is time to make the switch
- Ask to meet the adult pulmonologist who will take over your care
- Take a tour of the new adult care facility
- Discuss insurance issues with your parents, your carrier, and your clinic social worker
- Talk with your health care team about what role your parents will play during and after transition
The move into adult care may come with a fear of the unknown, but it's also accompanied by plenty of opportunity. You now have the chance to develop an adult relationship with your care team, one that opens the door to independence and self-reliance. Brianna says that opening one door, however, doesn't necessarily mean you've closed another.
“My pediatric team is part of my family, and they will always be a part of my family, even after moving on to an adult clinic.”