Saying Goodbye to Pediatric CF Care and Hello to Adult CF Care

Although packing up and moving to college is not easy for anyone, it becomes more complicated for a person living with cystic fibrosis. Not only do we have to adjust to the unfamiliar ways of college life and be entirely in charge of our health, but the group of people we trust with our life changes as well.

| 4 min read
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Hogan Reed
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You will say hello to hundreds of new faces as you leap into college, but you may have to say goodbye to the familiar faces of your cystic fibrosis care team when you make that transition. I spent the majority of my life with the same pediatric clinic based in Portland, Maine. They really knew me -- all about my health (of course), tendencies as a patient, hobbies, and loved ones. But in Fall 2015, I moved to the University of Vermont, where I was thrown into the arms of a new adult CF care team.

I wasn't aware at the time, but from the moment I was diagnosed with CF (at about 3 years old), my pediatric care team became an extension of my family. This is the group of knowledgeable specialists whom I would grow up to love, dread, and most of all, trust. How do you thank someone who has devoted their professional life to helping you live and get to where you are now: adulthood? And how could you possibly say goodbye? I'm not quite sure how, but I did say goodbye to my pediatric CF team.

The whole passing of the torch between my old clinic and the new one was not at all a majestic ceremony (I wish). Rather, it was just a lot of digital files being sent from one computer to another. For me, it was a huge adjustment switching from a group of specialists who I have known ever since I started making memories, to a team who, at the beginning, only knew me from the statistics printed out in a folder labeled “Reed, Hogan.”

Clinical relationships take time to build! You will learn new things about each other years after being together and you might have to adjust your habits and pick up a few of theirs (wow, sounds a lot like dating). A year and a half later, I am still becoming familiar with my doctors in Vermont. I really didn't appreciate the close relationship I had with my pediatric CF team until I moved to college -- yeeehaw! Freedom! Right?

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Yes, freedom is right. I am finally independent, but it is important not to forget that I am still very much dependent on all my medications and therapies. Sticking to my daily treatmentssterilizing neb cups, managing prescriptions, and making appointments with my clinic is now my job. I am more independent now and although my new care team is always ready to provide support if I need it, they also give me the space I need to become truly responsible for my own care.

For me, independence is an exciting challenge that has its positives and negatives. But once you step out of the life you're used to and move to college, you may see your caregivers in a new light. It can be empowering, difficult, and uncomfortable, but becoming responsible for ourselves forces us to grow and is a step we all need to take.

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Topics
Adult Care | Teen Care | Care Team
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Hogan was diagnosed with cystic fibrosis at age three and has been smiling, laughing, and coughing her entire life. She is a strong believer in the benefits of optimism and loves spreading enthusiasm and positivity. Hogan grew up on the coast of Maine and recently graduated from the University of Vermont. She is the leader of her Great Strides team, “Hogan's Heroes,” and spends her springs fundraising for CF. Reach out to her on the Hogan's Heroes team Facebook page.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.