Transitioning to Adult Cystic Fibrosis Care: Devon’s Advice
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The Cystic Fibrosis Center at Children’s Hospital of Philadelphia (CHOP) has been like a second home for Devon since she was diagnosed with cystic fibrosis (CF) at a year old. Now 21, she has made the transition to adult care at the Hospital at the University of Pennsylvania.
Devon was initially nervous about leaving the CF Center at CHOP, but thanks to preparation and supportive care teams, she was relieved to discover that the move was seamless. Wanting to reassure other kids with CF who are nervous about aging out of CHOP, Devon offers the following tips for patients with cystic fibrosis transitioning to adult care:
- Meet with members of the adult healthcare team before your transition, if possible.
- Come prepared to your first appointment. Write down any questions or concerns you may have, whether it’s about your health, the center, the team or anything.
- Become familiar with the team structure. The first appointment is all about you and the team getting to know each other. No matter where you go for care, the team structure will probably be different than at CHOP. A few differences:
- In adult treatment centers, there may only be one social worker for the entire CF clinic. You may not see them every time, but remember they can be available if you need them, so don’t hesitate to ask.
- You may meet with several new team doctors. At first, you’ll have appointments with each one, so they can all get to know you. From there, you can decide whether you’d like to see a specific doctor or whether you want to see whoever is available that day.
- Respiratory therapists will be available to make sure you have everything you need and are doing OK with treatments. You won’t necessarily see the respiratory therapist at every appointment, but if you need something, let the therapist know.
- A physical therapist may come in once or twice a year to assess your ability to do physical activity and to talk about exercise. As with the other health professionals, if you need to see the physical therapist more often, just ask.
- Be open and honest. At your first appointment, there will be a lot of discussion about your history, your patterns, how your health is, and who you are as a person. Nobody will judge you. The goal of this appointment is to figure out how the team can best support and help you.
- Remember, you're in this together. The adult team is not scary! I always imagined that once I moved to adult care, everyone would be cold and uncaring. That could not be further from the truth. Like the pediatric team, the adult team wants to work with you and help you get what you need. You don’t have to suddenly have “everything together,” either. If you need sedation with PICC lines, that’s perfectly OK! If you need someone to hold your hand before surgery, that’s perfectly OK, too! Be open about what you need, and they will be flexible and work with you.
- Advocate for yourself. You might not always be on the CF floor. If you’re in the hospital for non-CF reasons, like sinus surgery with no respiratory complications, you might be on the surgical floor. Not every floor is familiar with CF, so be an advocate for yourself. If you’re not getting the CF care you need and deserve, even after bringing up your concerns with the doctors on your floor, contact the CF team directly. They will act as liaisons between you and the inpatient team, and will make sure you get what you need.
- Be ready to care for yourself. You’re an adult now. No one is going to chase you around to do your treatments while inpatient, or sit around while you do it. That is your responsibility.
- Don’t hesitate to have someone stay at the hospital with you. They don’t have nice little couches like at CHOP, but there are sleeper chairs and cots.
- Don’t think that transitioning means everything is going to change. If your current routine and care plan are working for you, keep them. But if there’s anything about your health or care that you’ve questioned, bring it up and your adult team will try to find a solution that works for you.
Devon has one more piece of advice. Before completing her transition to adult care, she made a final appointment at the CF Center at CHOP to say her goodbyes. It was an emotional day, bidding farewell to the healthcare professionals who had cared for her for most of her life. But it gave her the sense of closure that she needed to take this important and necessary step forward into managing her own care.
