The Trikafta Experience
In this powerful episode, we sit down with Caleb and Tiffany Remington (@ustheremingtons) to explore life beyond Trikafta, the groundbreaking CFTR modulator that has transformed the CF landscape for roughly 90% of patients. Caleb, who lives with cystic fibrosis, and Tiffany, his wife and caregiver, share their honest perspective on navigating this new chapter where survival has shifted to actually planning for the future.
This conversation goes beyond the medical breakthroughs to examine the complex emotional and psychological adjustments that come with life-changing treatment. We explore how couples navigate the transition from caregiver-heavy relationships to more balanced partnerships, and the unexpected challenges that arise when hope becomes reality.
Key Topics Covered:
- The physical and emotional experience of starting Trikafta
- How gene modulators change relationship dynamics between patients and caregivers
- Processing survivor's guilt while advocating for global access
- Relearning your body and identity after dramatic health improvements
- Planning for the future when it was never guaranteed before
- The responsibility of advocacy when you've benefited from breakthrough treatments
Whether you're living with CF, caring for someone who is, part of the broader chronic illness community, or working in healthcare, this episode offers valuable insights into resilience, hope, and the complex realities of medical breakthroughs. Join us for an honest exploration of what it means to move from surviving to truly living.
This podcast is for educational purposes only and should not replace professional medical advice.
Creators and Guests
Host
Caleigh Haber-Takayama
I'm Caleigh Haber, a cystic fibrosis warrior, two-time double lung transplant recipient, and passionate advocate for the chronic illness community. Born with CF, I've navigated countless surgeries and medical challenges while choosing to live each day to the fullest in honor of my donors and with deep gratitude for my supportive community. Through Fight2Breathe and my podcast "Our Fight to Breathe," I advocate for the cystic fibrosis, organ transplant, and rare disease communities, working to raise awareness and inspire others to thrive despite their challenges.
Guest
Caleb + Tiffany Remington
Caleb and Tiffany Remington are a dynamic couple known for sharing their journey with cystic fibrosis through their platform @ustheremingtons. Caleb lives with CF, and Tiffany is his wife and dedicated caregiver. Together, they offer an honest and heartfelt perspective on the challenges and triumphs of life with CF, using vulnerability, humor, and openness to connect with and support others. Their advocacy and storytelling have made them trusted voices in the CF community, especially as they navigate life on Trikafta. Their partnership exemplifies resilience, love, and the power of community support.