How I Coordinate My Care With 2 Different CF Clinics

When it comes to my cystic fibrosis care, some might say that my situation is a bit unique. Although having not one -- but two -- CF care teams can be challenging, I strongly believe that has made me a better, smarter, and more engaged patient.

| 5 min read
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Megan Lepore
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In 2015, I took a somewhat familiar -- but always intimidating -- step for a cystic fibrosis patient: walking into a new CF clinic to meet a new doctor and care team. Usually by necessity but occasionally by choice, I have walked through new clinic doors probably a dozen times in my 33 years. Doctors moved away or retired; I moved across city and state lines to pursue higher education and a career; or, the doctor just seemed like the wrong fit for my case. This time, though, none of those reasons applied.

Although I adored my CF care team, I was in search of something more: lumacaftor/ivacaftor (Orkambi®), which my current clinic was unable to access for me due to its unique care structure. With my doctor's blessing and encouragement, I contacted a second CF clinic an hour away. This new clinic had been a clinical trials study site for lumacaftor/ivacaftor, so I was hoping the doctors there would be able to assess whether I should try the new drug. The new doctor at the second clinic agreed that I would be an ideal candidate for lumacaftor/ivacaftor. She also confirmed that I could continue to be a patient there while still seeing my other CF doctor. And so, two CF clinics began to share joint custody over my care.

While I do seek care from two different clinics, the phrase “joint custody” implies that I play a passive role here, and that couldn't be further from reality. The truth is that navigating two different CF care teams has made me a more engaged patient and advocate for my care.

My first clinic is much closer to my home and significantly smaller, which makes it my go-to spot for labs, no matter which doctor has requested them. Because of its small size, there is only one CF doctor there, and she answers her personal phone when I call with a question. The wait times for phlebotomy are typically short, and I have become well-acquainted with the friendly man at the front desk who stamps my parking ticket during each visit.

On the other hand, the second clinic is part of a large, nationally recognized university hospital. It has an entire team of CF doctors and nurses available for rapid email feedback, consultation, and appointments. This clinic has also connected me to phenomenal resources, such as a dedicated CF pharmacist, who comes to my appointments to ensure I'm enrolled in all the right prescription drug discount programs and can answer my questions about dosages or drug interactions.

But, while two care teams may mean double the resources for medical advice, it also means I have twice the work when it comes to coordinating my care. For example, I typically alternate between clinics for my quarterly check-ups so that each CF doctor sees me approximately every six months instead of every three. And beyond my CF clinic appointments, I have many other care teams and providers who need to be kept up to speed as well -- a primary care internist, a high-risk obstetrician-gynecologist (OB-GYN), a reproductive endocrinologist, an orthopedist, and a psychologist. In the age of electronic health records, information sharing across care teams is easier than it used to be, though certainly not foolproof. Every so often, I'll learn that a medical information release authorization needs renewing, which reminds me that I need to proactively share information across my care teams.

Certainly, there are times after a particularly helpful appointment with one clinic or when certain records appear not to have made it from one doctor to the other that I wonder if I should just choose one CF care team and let the other go. My current approach is not without occasional frustration for both me and my doctors, I'm sure.

But, I feel lucky to have two doctors whose advice I value, and at the same time, two clinics to provide a sort-of “check and balance” on my care. The first time I went to the second clinic and the doctor there agreed with the general treatment approach of my first doctor, I felt a huge sense of relief and validation that my care was on the right track.

However, my teams will occasionally offer conflicting advice. While that can be difficult to reconcile, it is also a helpful reminder that decisions about my care are ultimately mine. It is up to me as both the patient and the consumer to engage with my doctors, carefully consider their recommendations, perhaps do my own research, and decide how to proceed. I believe that engagement has made me a better, smarter patient. And at the end of the day, I know that having two CF care teams (albeit as unconventional and occasionally challenging) is a gift.

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Topics
Care Centers | Care Team
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Diagnosed with cystic fibrosis at four months, Megan received a Master of Public Policy degree with a certificate in health policy from Duke University after earning a BA and MA from Stanford University. Megan has spent her career working in health policy, focusing on Medicaid. In 2019, she joined the governance board of the Cystic Fibrosis Reproductive and Sexual Health Collaborative, a nationwide online collaborative committed to responding to the needs of the CF community through partnerships that pave the way for improved sexual and reproductive health resources, healthcare, and knowledge for people with CF. Megan enjoys dance, barre fitness, and yoga. She lives in Silver Spring, Maryland, with her husband, Bobby, and son, Henry.

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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.