12 episodes

When our son was diagnosed with Cystic Fibrosis at six months old we were shocked and devastated. From the first moment seeing his foggy little lungs, we knew this was gonna be a rollercoaster and we weren't wrong.

What the CF! was born out of a curiosity to learn more, support others, and share experiences while we navigate our own CF journey.

We want to tell the stories of others and answer the FAQ's that come along with a diagnosis. We'll seek the knowledge of experts and those living with CF to help to paint a well-rounded vision of what living with Cystic Fibrosis.

WTCF! A Cystic Fibrosis Podcast What The CF! A Cystic Fibrosis Podcast

    • Health & Fitness
    • 5.0 • 1 Rating

When our son was diagnosed with Cystic Fibrosis at six months old we were shocked and devastated. From the first moment seeing his foggy little lungs, we knew this was gonna be a rollercoaster and we weren't wrong.

What the CF! was born out of a curiosity to learn more, support others, and share experiences while we navigate our own CF journey.

We want to tell the stories of others and answer the FAQ's that come along with a diagnosis. We'll seek the knowledge of experts and those living with CF to help to paint a well-rounded vision of what living with Cystic Fibrosis.

    Episode 10: CF Toddler

    Episode 10: CF Toddler

    In this episode, Ian and I get to grips with life with a CF toddler. It's a general update on how CF affects our everyday life, plus a few tips on navigating a few milestones as your little CFer grows up. 

    As always, we end up blowing off steam with many fits of giggles. We hope you end up finding some of this info useful regardless of our gaffs or at the very least we manage to make you smile.

    Love the podcast? Support us through buymeacoffee.com/wtcfpod
    Find us via the links shared or on the platform links below or search What The CF! A Cystic Fibrosis Podcast where ever you get your podcasts.

    LISTEN ON APPLE PODCASTS

    LISTEN ON SPOTIFY

    LISTEN ON GOOGLE PODCASTS


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    • 45 min
    Episode 9: Transplant

    Episode 9: Transplant

    Most of the New Zealand CF community know Lizzie McKay, a 30-year-old person with CF who works for CFNZ as a Communications Coordinator.  Her friendly and bubbly nature makes her easy to like but her story is not an easy one to hear as a mother of a little one with CF.

    In this episode, we discuss Lizzie's role at CFNZ and the organisation where she's found a whole new family. She also shares very candidly her journey to getting a lung transplant aged 21. If you are new to the world of CF maybe don't start with this episode as a discussion around transplants could be too confronting. However, if you're keen to know more about the process and recovery then listen to this brilliant chat with Lizzie. She's so upbeat ad honest about her life and health and hands out prize pieces of advice like candy!

    You can follow Lizzie on Instagram as @lizziemckay

    Email her at comms@cfnz.org.nz

    Love the podcast? Support us through buymeacoffee.com/wtcfpod


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    • 42 min
    Episode 8: KALYDECO

    Episode 8: KALYDECO

    Chris Macleod is a Candian with CF who was one of Canada's first patients on Kalydeco ten years ago. He’s now 52 and has advocated for CF for many years. He’s also written a book called Beating The Odds: 11 Lessons to Overcome a Health Crisis and Lead a Resilient Life.

    We talk about his life with CF, his career as a Lawyer and how that's helped him advocate for the Canadian CF community and how his book can help us all become more resilient.

    You can follow Chris on Instagram as @chrismacleodbto

    Get your hands on a copy of Chris's book at https://www.beatingtheodds.ca/

    Love the podcast? Support us through buymeacoffee.com/wtcfpod

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    • 49 min
    Episode 7: Trikafta

    Episode 7: Trikafta

    Welcome to Season 2 or What the CF! We're so happy to be back and ready to share lots of CF stories about treatment with you.If you're part of the CF community and not aware of Trikafta (or Kraftrio) then you've been living under a rock! This 'miracle' treatment isn't yet funded in New Zealand and we want that to change ASAP. 

    Edward Lee is a 39-year-old PWCF living in Wellington. He self funds Trikafta and is celebrating two years on this life-changing drug. I wanted to speak to Ed to find out more about his life with CF and his journey to getting Trikafta. Many of you will know him from various media interviews he's given and his involvement in campaigning to get Trikafta for Kiwis. Ed was very open, knowledgeable and positive about the future so I hope you enjoy getting to know him better in this podcast.

    You can follow Ed on Instagram as @kiwi_cf_warrior

    Love the podcast? Support us through buymeacoffee.com/wtcfpod
    Find us via the links shared or on the platform links below or search What The CF! A Cystic Fibrosis Podcast where ever you get your podcasts.

    Spotify

    Apple Podcasts

    Google Podcasts


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    • 55 min
    Episode 6: Book

    Episode 6: Book

    Ingrid chats to Eilís Moroney, the author of 'Our Baby Has 65 Roses' and mum of a little person with CF -  two-year-old AibhÍn, about diagnosis and how writing a book was her coping mechanism.
    Listen to the podcast for your chance to win a copy of the book, and email your answer to wtcfpod@gmail.com. You can also purchase the book here.
    Find out more about CFNZ here to access resources.
    What the CF! A Cystic Fibrosis Podcast was born out of a curiosity to learn more, support others, tell stories and share experiences while we navigate our own CF journey.
    Series one of the podcast will focus on diagnosis and will feature conversations with Cystic Fibrosis medical experts, CFNZ, Genetic Counselling, and more.
    Ingrid and Ian’s story:
    “When our son was diagnosed with Cystic Fibrosis at six months old we were shocked and devastated. The road to diagnosis took several painful weeks. What started with kisses on salty skin soon became a persistent cough prompting many GP visits and eventually an X-Ray - the results of which opened the gates to the possibility of CF.​
    From the first moment seeing his foggy little lungs, we knew this was gonna be a rollercoaster and we weren't wrong. Only a week after diagnosis we were chucked into the COVID lockdown left to digest this huge news within our wee family. The overwhelm was real, and although the team at the hospital were amazing, it was the online community of CFers and their families where we found an abundance of warmth and understanding.”​
    What the CF! A Cystic Fibrosis Podcast is currently seeking funding and taking donations, 10% of which will go to Cystic Fibrosis New Zealand. For more information contact Ingrid on wtcfpod@gmail.com

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    • 51 min
    Episode 5: Dads

    Episode 5: Dads

    Eddie, Henry and David are all parents of little CFers. Ian chats to these three dads about diagnosis, telling friends and family, and what NOT to say to a CF parent. Thanks again to our guests for sharing so candidly and we know it's going to help others in the community. For further info visit whatthecf.com.


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    • 42 min

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