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July 2012

Transitioning from Pediatric to Adult CF Care 

Cx - July 2012 - Transitioning Care - Inside

Mary Elizabeth Huggins, 19,who has
CF, lives with a roommate and her
puppy Lucy near the College of
Charleston in South Carolina, where
she is majoring in business.

Colleges, careers, families: Becoming an adult is all about making your own choices.  For young people with cystic fibrosis, an important aspect of entering adulthood  is transitioning from pediatric  to adult CF care — and all the new opportunities  for independence and decision-making that come with this momentous change.

Connections spoke with one young adult with CF, Mary Elizabeth Huggins, who recently made the transition from a pediatric to an adult CF care center team, and she kindly shares her experiences.

Q&A with Mary Elizabeth Huggins

Mary Elizabeth Huggins, 19, who has CF, receives her care at the Medical University of South Carolina Adult CF care center and is a rising sophomore at the College of Charleston in South Carolina.

Which CF care center did you attend while growing up?

I was diagnosed with CF when I was 9 months old and started receiving treatment at the CF clinic in Columbia at the University of South Carolina.

When I was about 12 years old, I switched to the Medical University of South Carolina (MUSC) care center in Charleston and started seeing Dr. Isabella Virella-Lowell as my pediatric CF doctor.

How was your transition to the adult care center team at MUSC?

They have a really great transition process within MUSC. I started meeting with doctors by myself when I was about 16, and over the next year I met the adult care team and started getting to know them a bit.

It was a gradual transition, and once I turned 18, I was completely transitioned over to the adult care center team. Now I see both Dr. Patrick Flume and Dr. Antine Stenbit, depending on how our schedules align. The transition was very smooth.

Committed to Meeting the Needs of Adults with CF

The number of people with CF living into adulthood continues to grow, and today, more than 47 percent of the CF population is age 18 or older.

To ensure that the growing population of adults with CF receive the best care possible, the CF Foundation’s network of accredited CF care centers are committed to developing and maintaining  programs that meet their unique needs.

Why do you think the transition went smoothly for you?

There are a few team members who work on both the pediatric and adult teams, so I didn’t feel like I was starting from scratch. In my experience, the doctors are different but the support I’m getting is still the same.

I love my doctors because they are so open and welcoming when I bring my friends and family to appointments with me. They both realize that the people I love are my motivation for taking care of myself, and my doctors are perfectly willing to sit down and help me explain my health to others so they're better able to help me take care of myself. It makes a world of difference when your family and friends are all on your team.

What was the biggest change you experienced?

The appointment itself is essentially the same, in both the pediatric and adult care centers. But the adult care center was a bit intimidating at first, because rather than having doctors tell you what you should be doing, they ask: What do you think? What do you want to do?  Although it was intimidating, it was also liberating to have more of an active role in my care and make more choices for myself.

For example, when I am sick, I generally have the option of maybe trying oral or home IVs, or just skipping that step and going straight into the hospital. It’s nice to be able to make that call myself!

As I've gotten older and matured, I've realized that usually just going ahead and doing the hospital visit is the most effective route for me, but it still feels good to know I've decided it myself.

Any other insights to share with young people with CF who are transitioning into adulthood?

The best advice I can give to anyone approaching the transition is to think about what you want and what’s right for you, and plan for it.

For me, I wanted to go to college, and I only felt comfortable applying to schools that had CF care centers nearby. My clinic is literally about 5 blocks away from my apartment. If I’m in the hospital, my friends can easily come see me. And it gives me much more independence, knowing that I won’t miss a week’s worth of class just because I’m at the doctor’s office.

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