The Long Road to a Cystic Fibrosis Diagnosis (at 61!)
- The Long Road to a Cystic Fibrosis Diagnosis (at 61!) Christine Meyer 46:31
Kathy’s problems began in 2011 with a cold that wouldn’t go away.
She was initially diagnosed with bronchiectasis, and after seeing a local specialist, Kathy discovered she had mycobacterium avium complex or MAC as well.
But the cocktail of antibiotics she was taking didn’t stop her nagging cough or keep her from getting sick on a regular basis. And then she started seeing blood in her sputum.
Why did it take 10 years for Kathy to start feeling good again? How did she finally get the help she needed?
On this episode of Tell Me More, Kathy joins me to share her decade-long journey through the healthcare system and discuss how she found the program at National Jewish Hospital in Denver that changed her life.
Kathy explains how the medical team in Denver’s approach differed from that of her local pulmonologist and walks us through the conversations that led to a diagnosis of cystic fibrosis.
Listen in for Kathy’s advice to patients with difficult-to-diagnose pulmonary issues and learn how she transitioned from never-ending drug treatments to a simple air clearance routine.
Key Takeaways
How Kathy’s cold that wouldn’t go away led to an initial diagnosis of bronchiectasis
Kathy’s conversations with the specialist who diagnosed her mycobacterium avium complex
The antibiotic cocktail Kathy took 3X per week for 5 years to treat her MAC
Why the blood in Kathy’s sputum was dismissed (even after she woke up gagging on blood on a trip)
What inspired Kathy to see an infectious disease specialist and the treatment she recommended
The program at National Jewish Hospital in Denver that finally diagnosed Kathy with cystic fibrosis
How the team in Denver’s approach differed from that of Kathy’s prior pulmonologist
How Kathy transitioned from ongoing drug treatments to just air clearance
Kathy’s advice for patients struggling with bronchiectasis who aren’t improving
How most of the specialized treatment at NJH was covered by Kathy’s insurance
Kathy’s conversations with her daughters around navigating cystic fibrosis
Connect with Dr. Meyer
Email christine@christinemeyermd.com
Resources
‘What It’s Like to Learn You’re Going to Live Longer Than You Expected’ in The New York Times
Dr. Lommatzsch at National Jewish Health
