What I Didn’t Expect About Transitioning From Pediatric to Adult CF Care

My transition from pediatric to adult care filled me with anxiety and proved to be much more difficult than how the experience was described to me. But, when care centers work together with their patients and listen to their concerns, we can improve cystic fibrosis care and address concerns much sooner.

| 5 min read
Rebecca Donoho
Rebecca Donoho
Rebecca smiling at the hospital with her care team.

I was born in December 1996 in Thousand Oaks, Calif. Over the next year, I struggled with a lot of digestive tract health issues, and on June 12, 1997 at 5 1/2 months old, I was diagnosed with cystic fibrosis at UCLA Medical Center in Southern California. In 1999, my family moved up to Oregon, and I began receiving care at Oregon Health and Sciences University with the pediatric CF care team. 

My older brother and I were raised by a single mother with help from my grandmother. My mom struggled to make ends meet while raising two children — one who was chronically ill. I had a normal childhood growing up, barely noticing that I was different from my peers. I did get made fun of quite a bit growing up due to my chronic cough and my inability to gain weight, but I pushed through it and didn’t let it affect me much. At 13 years old, I was diagnosed with cystic fibrosis-related diabetes (CFRD). I immediately started an insulin regimen and began seeing an endocrinologist who specialized in CFRD. I was lucky enough not to have any major problems with my lungs growing up. 

Unfortunately, at the age of 14 — a year after my diabetes diagnosis — I was hospitalized for my very first CF exacerbation. It was a very scary experience because this was not something I had grown up doing; I was very traumatized during my first couple days inpatient. Thankfully, all my nurses and certified nursing assistants were amazing, and took great care of me, easing my nerves and anxiety.

My pediatric care team was made up of such amazing people — they always made sure to ease any worries I had about my care or treatment plan, as well as any concerns I had regarding my future CF journey. My team really became like my second family to me. As I got older, and the talks about transitioning became more frequent, the more scared and anxious I became about having to entrust my life with brand new people I didn’t know. I had always been assured that the transition process was going to be easy. I was told I would meet my new care team before the transition, and I would be eased into it to make everything more relaxed for me and my new care team. Unfortunately, this is not what happened to me. My transition from pediatric to adult care was a very traumatizing and anxiety-inducing experience.

In January 2018, one month after my 21st birthday, I had my first scheduled visit with my new adult CF care team. I had no prior introductions to any team member, no explanation of how my first few visits would go, or how they would look — leaving me with agonizing anxiety for my first clinic visit. The one saving grace I had was that my lifelong social worker, Wendy, ended up joining the adult care team and transitioned with her patients. This made the process a little easier as Wendy had previously worked with the team, so she could tell me more about them and the way they handle patients. A few months later, the pediatric pharmacist joined the adult team as well; I was glad I at least had two people I knew and was comfortable with on my side. I’m so thankful that I now have a great relationship with my care team, and I’m amazed by the generosity and professionalism that my team has — I couldn’t ask for a better one.

Since transitioning five years ago, stories like mine have been shared with the CF care team from other patients, and they have since changed how the process works. Our team’s social worker now starts visiting with pediatric patients who are at least one year away from transitioning to adult care to talk to them about how the team operates and what to expect within the first few visits. This is a dramatic change compared to when I made this transition years ago.

It is very important to our community that we as patients and our care teams work on how we can better communicate among each other to provide the best care possible, not just for the physical health of the patients, but also for their mental health as well.

Even just setting up small introductions a few months in advance with additional team members like a physician, team nurse, and team respiratory therapist, could better help ease nervousness and uncertainty in the process. We can always improve our conversations to provide each other with the necessary support needed for our care.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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.

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Rebecca Donoho

Rebecca was diagnosed with CF at 5 months old. She lives in Oregon with her parents, her boyfriend, and her dog. Rebecca currently works as a hospital registrar at her local emergency department. She has her certificate in medical coding and reimbursement and she’s looking forward to pursuing a degree in paramedicine to become a life flight paramedic. Her passions include advocating for fellow disabled patients who feel they aren’t being heard by their medical team, animals, hiking, and listening to thunderstorms. Rebecca has supported the CF Foundation through fundraising at Great Strides events. Additionally, she has participated and continues to participate in clinical trials to further CF research and loves to advocate for improved CF care. 

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