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  • This isn’t what I expected…

    Posted by jenny-livingston on March 15, 2021 at 11:45 am

    I’ve wanted to share something I experienced recently, although I don’t think my mind has fully digested it yet. The  week before last, I was able to do PFTs in a lab for the first time in over a year. Throughout this pandemic, I haven’t known what my lung function is which, in a way, has been nice.

    I’m a firm believer that, while PFTs are important and can certainly be a helpful tool, they are still only one piece of the puzzle. There are many other things that matter just as much or more: how well I feel, my stamina,  whether I have the energy to complete the things I need and want to do, etc.

    We know that CF is a progressive disease. The narrative has always been that as the body ages and this disease takes it’s toll, lung function will decline. This is what I’ve learned to expect. This is the way I’ve seen things play out for myself and for others.


    When I did PFTs recently, I saw the highest number I’ve seen in over a decade. My lung function has increased on Trikafta, which isn’t entirely unexpected; it’s happened for many people! But seeing that number really struck me. I know I’ve been feeling well. I know it’s been a good year for me. I know I’ve benefitted from Trikafta in many ways (see all the things listed above). Even still, that number, — one I don’t generally put too much stock in —  brought immediate tears to my eyes.

    This wasn’t the way it was “supposed” to be. I’ve learned to separate myself from many of the stories we hear about CF. I know that my experience will be unlike anyone else’s. Our experiences are as unique as each one of us. But to see and feel myself exceeding expectations and defying the odds still feels unreal.

    paul-met-debbie replied 3 years, 3 months ago 2 Members · 2 Replies
  • 2 Replies
  • bailey-anne-vincent

    March 15, 2021 at 11:57 am

    As I was reading, I kept getting a feeling of dread, expecting you to say: “And my numbers dropped”… and then you said the opposite. And maybe that proves your point? I am so used to this being a “progressive disease”, that even when some of us have access to a drug that’s truly working, and find success… my mind has not adjusted yet? I am SO excited for you and couldn’t think of a more deserving person to see positive news for once!

    Follow Up Question: Can you do something to celebrate? Truly celebrate? (I think we are used to hiding our triumphs or feeling guilty for celebrating… but you have earned a proper cheer!)

  • paul-met-debbie

    March 16, 2021 at 4:59 am

    I am so glad for you! And you are right, when we write our stories in water in stead of stone, every moment is a surprise.

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