Facing and Embracing CFRD

Although I didn't have cystic fibrosis-related diabetes, I avoided dealing with my blood sugars. Now that I do, I feel stronger physically and emotionally.

| 5 min read
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Megan Lepore
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On September 21, 2019, I had the joy and privilege of facilitating a breakout session at BreatheCon on cystic fibrosis-related diabetes (CFRD). I had been looking forward to talking with others about their experiences with CFRD and sharing my own journey, but my expectations for the conversation were dramatically exceeded. Not only was it a packed virtual room, but the conversation could have gone on for hours. There was a stunning level of commonality among the group.

Most striking to me was how many of us live in a confused, quasi-diabetic state -- not quite diabetic by CFRD standards but struggling with blood sugars that swing wildly with limited tools, information, and well-informed specialists to help us deal with this part of our health. Also common among the group was a sense of fear and frustration: CF already consumes so much of our daily lives. Do we really need to add blood sugar management on top of it all?

The answer in my case, after two decades of periodic high blood sugar readings, sweaty and shaky lows, and a hemoglobin A1c that had crept up slowly over time, was a resounding yes. I was 33 and my husband and I had recently entered our second year of fertility treatment, which for us, meant that we had begun in-vitro fertilization (IVF). Over the last 20 years, my diligence about checking my blood sugar with periodic finger sticks and eating foods that (I knew) wouldn't spike my blood sugar had waxed and waned. My A1c bounced around in a fairly narrow range: not high enough to be considered diabetic, but often a little elevated. In my teens, I had annual oral glucose tolerance tests. By my twenties, I was tired of a test that made me feel sick and always yielded the same result of blood sugar climbing pretty high after one hour, but settling back down after two. Indeterminate glycemia or impaired glucose intolerance but not CFRD.

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An insulin pump was a crucial part of my CFRD management during my pregnancy.

In the spring of 2018, something changed for me. I felt more dedicated to my health, knowing that if I were to become pregnant, a half-hearted attempt at blood sugar management would no longer cut it. After months of pricks and pokes in attempts to get pregnant, small insulin needles no longer scared me the way they once did. I learned that although finger pricks were once the only way to check blood sugars, we now live in a world with continuous glucose monitors (CGMs) that can be worn at home 24/7, which warn patients if their blood sugars are too high or too low.

Finally, I made an appointment with an endocrinologist who works closely with the team at my CF clinic to get his read on my situation. He was reasonable, calm, supportive, and well-informed. We started slowly with insulin, and he wrote me a prescription for a CGM. After my first couple of weeks on insulin, I noticed that my fatigue had decreased dramatically and I was no longer falling asleep on the couch watching TV at 8 pm. Armed with new tools, I was better equipped to continue my fertility treatments -- including managing fluctuating blood sugars that accompanied my ever-changing hormone levels.

By the time I finally became pregnant with my son, I was already accustomed to monitoring my blood sugar and taking action, which was invaluable in helping me maintain very tight blood sugar control during pregnancy. My CF team grew to include a diabetes team, and a CF clinic nutritionist who was also a certified diabetes educator. Together they supported me closely all throughout my pregnancy.

As I spoke with others during the CFRD session at BreatheCon, it saddened me to hear how few patients felt like they had the kind of support for their CFRD that I found. It is incredibly difficult to find endocrinologists who are well versed in the nuances of CFRD, and who can come up with treatment plans that make sense for both our nutritional requirements and our blood sugar needs. I wonder how many others with indeterminate glycemic or impaired glucose tolerance could be served by tools like continuous glucose monitors to make more informed treatment decisions before they develop full-blown CFRD.

In my experience, finally facing my CFRD head-on has meant a dramatic improvement in my energy levels, not to mention a healthier pregnancy. I was scared for many years to take on the task of dealing with my blood sugars more directly, but now that I have the right team and treatment plan in place, I feel empowered to manage my health and I am stronger for it.

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Topics
Care Team | CF Related Health Conditions | Fertility and Reproductive Health
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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.