E took her first dose of Orkambi this morning! It took just over a month to get it approved by insurance and delivered. I plan to catalog her moods, feelings, and health over the next few months to see if we can tell a difference.

  • This morning before she took Orkambi, I kissed E’s forehead and she was as salty as ever! Her sweat test results were 107 and 112, so she’s pretty high on the salt scale. Non-CF is under 40, 40-60 is a gray area, and 60-100 is positive for CF.
  • FEV1 Lung function test: At her last CF Clinic appointment, she had a FEV1 of 86, which is a little down from her usual low-mid 90’s. She had a sinus infection at the time, so she did a round of antibiotics that she finished up yesterday. I am positive that her FEV1 will increase, regardless of the Orkambi.
  • This afternoon, she has stated that she feels a little tired, but she stayed up late last night, so maybe not related. She says that she hasn’t noticed any unusual feelings yet.

Stay tuned for more updates!

Medical Disclaimer

Our Journey with Orkambi has Begun!

3 thoughts on “Our Journey with Orkambi has Begun!

  • April 8, 2016 at 8:02 pm
    Permalink

    Congrats on Orkambi! I’m following this, I have been debating whether to take it myself. Hope she sees great improvements with little side effects!

    -Cheriz, CF, age 31, Blog: http://www.cheriz.org

    Reply
    • April 9, 2016 at 8:36 am
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      Cheriz,
      Thanks for the encouraging words! I have no real expectations for how Orkambi will affect E, but I guess my major prayer is that it will add longevity to her life, even if it doesn’t take away any of the struggles she has now. I checked out your blog…will become a regular reader! 🙂

      Reply
  • April 9, 2016 at 1:54 pm
    Permalink

    Excited she can start this medicine! So Orkambi should improve sweat and lung function? Praying for great results!

    Reply

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