This topic contains 2 replies, has 2 voices, and was last updated by  Jenny Livingston 3 weeks, 5 days ago.

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  • #13820
     Jenny Livingston 
    Keymaster

    Ella Balasa, a columnist at CF News Today, was recently granted early access to the “triple combo” — the latest CFTR modulator therapy from Vertex, which is currently being evaluated by the FDA.

    Here’s what Ella has to say about it:

    “I started the triple combo on September 23rd at 25% lung function. I have been followed at Duke for transplant, but have wanted to hold off on being listed until I gave the triple a shot. After starting, I caught what I thought to be a cold and had increased mucus and sinus draining for about 2 weeks, then it started to reduce in volume.

    I use 3 liters of oxygen when exercising, and my O2 needs have been about the same so I didn’t expect much improvement after 3 weeks. But I had PFTs done and they increased 4% up to 29%! I was shocked, but so happy! I hope to continue seeing improvement as I know I still have mucus plugs in my lungs.”

    Follow Ella’s journey on Instagram at: https://www.instagram.com/thisgirlella/

    What are your hopes and expectations for the triple combo? 

     

  • #13825
     Luisa Palazola 
    Keymaster

    Love it! Triple combo is … 😉

  • #13826
     Jenny Livingston 
    Keymaster

    It’s so exciting! Every time I hear stories like this or see the research (Dr. Boyle’s presentation at BreatheCon was awesome) I get so giddy!

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