I’m processing a recent asthma diagnosis for my daughter with CF
A troubling chronic cough and a bronchoscopy lead to answers, but now what?
My husband and I sit in the same waiting room we did years ago when our daughter, Claire, was a newborn. A similar sense of anxiety washes over me as I watch for her pulmonologist to emerge from the operating room.
Claire was undergoing a bronchoscopy, a procedure to take a closer look at her lungs and collect samples to identify any bacteria that might be present. The procedure was scheduled after her doctors couldn’t identify the cause of a persistent cough she’s had for four months.
Her pulmonologist finally appeared and shared some surprising news: He believed he’d found the source of our daughter’s chronic cough. He told us that when she was administered anesthesia, her oxygen levels had dropped. Upon hearing this, I instantly panicked. He further explained that she began having bronchial spasms, and her lungs tightened. Because of this, they administered a breathing treatment and her spasms stopped. According to the doctor, this was a chief indicator that she had asthma.
I was shocked. How could she have cystic fibrosis (CF) and asthma? The possibility had never been discussed the entire time we had been searching for answers.
Isn’t cystic fibrosis enough?
CF-asthma overlap syndrome
A secondary diagnosis for people with cystic fibrosis is not uncommon. The disease affects many systems in the body, leading to a multitude of secondary issues. Cystic fibrosis-related diabetes (CFRD) affects about 19% of people with the disease. A heightened risk of bone and liver disease is also correlated.
Having cystic fibrosis and asthma is even more common than CFRD. The CF Foundation Patient Registry documented the prevalence of asthma in CF patients to be 30.8%. Clinicians in the CF community have identified the presence of both conditions as CF-asthma overlap syndrome. However, very little information is available about the dual diagnosis.
Asthma and cystic fibrosis appear similar in symptomatology, making it hard to differentiate between the two. We spent months doing numerous trials of different medications and a bronchoscopy to finally isolate the issue. I am grateful we now feel like we have answers to the mystery of her long-term cough.
Still, it scares me for her future knowing that she has more than cystic fibrosis to deal with. I now must question whether a flare-up or cough is related to CF or asthma. I still don’t know how to tell the difference, and I’m learning as I go.
Claire’s team of doctors have explained that this may mean she has a harder time kicking respiratory illnesses, even with the addition of highly effective CF modulators. That part of the diagnosis was hard to come to terms with.
Sometimes I question why she has such a hard path with her disease, and now a secondary diagnosis, at just 5 years old. For now, I’m trying to stay calm and remain positive as we manage both conditions. We’ve added a steroid inhalant with her breathing treatments. And after six months of having a consistent cough, she finally stopped right after the holidays.
Our path to Claire’s asthma diagnosis wasn’t linear, but it led us to a place where we can finally address the issues.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
About the Author
Comments
Ira Redwood
I am a CF parent as well, and our daughter was diagnosed as having “asthma-like” symptoms while we were living in Halifax, NS, Canada. Once we moved back out west, her symptoms disappeared. We found out later that the air in the Maritimes (NS, NB, PEI, NFLD) is full of chemicals as that region is downwind of many polluting industries. Maybe something you could look into… Good luck! (There’s always something…)
Patricia Clements
I am a 72.5 year old CF patient that has asthma, allergies and Sarcoidosis along with my CF. Fortunately, my CF was mild all during my younger years, manifesting mostly in my sinuses. In my old age, I now have more lung involvement. Trikafta has helped me tremendously. I have noticed that when my allergies act up, like at this time of year, my coughing from the asthma starts up again. My Sarcoidisis was diagnosed with a Bronchoscopy when I had a continuous cough for over a year. As of now that seems to be in remission. With your little one, maybe it would be helpful to see if allergies are involved that are triggering her asthma. God Bless!