Transitioning from Pediatric to Adult CF Care

As an adolescent with cystic fibrosis (CF), I remember sensing a dark cloud over my impending transition from pediatric to adult CF care. Even though transitioning care was a process discussed in-depth and executed with delicacy at my CF clinic, it was a really off-putting and anxious turning point for me.

From 7 to 23-years-old (why I was so old, we will get into later...), I saw the same pediatric CF doctor and team, inpatient nurses, and knew the clinic protocols and procedures with great familiarity. Rainbow Babies and Children’s Hospital, my CF center, was a small slice of CF home.

Procrastinating adulthood

With every milestone that came and went, my pediatric CF doctor and I would agree that the next milestone would be the time we finally parted ways and I would move to the adult service. That went on for a long time until I was 23 and about to get married. Now, we were quite literally forced to say goodbye, running out of excuses to delay. Truthfully, I needed an adult team that could advise me on adult CF realities: Career choices, disability, more intense care, family planning, etc. It was time to move on.

Transition pitfalls

As painful as it was for me to graduate from the care and faces I had grown accustomed to, it was hard for my CF doctor to finally bid farewell to the little girl in a candy necklace he had met so long ago, too. I wasn’t just a determined kid with an unknown future anymore, but a sickly adult ready to face the world and all the responsibility CF life throws at you.

What I learned from transitioning to adult care so late in the game was that there were pitfalls to this rite of passage. I may have missed some of the preparation in my own transition, but I hope by sharing with other young adults, they can benefit from my tips:

Don’t be dishonest about your CF care

Adolescence is a challenging period of time in terms of managing treatments and compliance with other medications. I’m certain that everyone struggles at one point or another, and our CF teams are aware of this. It’s OK – scratch that – it’s vital that you are honest with your new team when you’re struggling to manage your care. If they don’t know there’s a problem, they can’t help you address the issue.

Don’t overlook your own mental health

Gaining independence and responsibility during early adulthood is an overwhelming process, especially when navigating a chronic illness like CF as well. It can feel as if you’re losing control in a situation with too many moving parts. In my experience, this is an important time to talk about your mental health with your team and support system. Bring everything to the forefront so that you can feel empowered to care for yourself with the best mental health possible.

Don’t wait until the very last minute

Truthfully, 23 is too old to transition to adult care. There, I said it. As they say, transitioning to adult care should be “a long thing coming.” Having the conversations, meeting your team, and becoming familiar with the new processes is better done before significant adult milestones like college, marriage, first careers, etc. so you feel well established.

Don’t assume you’re alone

Although you may be growing up and becoming more independent, you should never be alone living with CF. Adulthood doesn’t mean you’re left to your own devices without any outside help. (Hopefully, that isn’t a reality for you. If so, I am so desperately sorry.)

Lean on your support system

Even now in my 30s, there are times when I need my support system to step in and take over as they once did in my late teens. Adulthood may mean independence, but that doesn’t mean support is pulled out beneath you like a rug. Sometimes the support just looks a bit different.

How was your transition from pediatric to adult CF care? Was it a difficult milestone or a welcome change? Share your experience below!