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    • #18440
      Jessica Torres taks about her son Bautista. CF entered their lives without permission, on Oct. 7, 2021, as a doctor told Jessica that Bautista had CF (he was three). The doctor also said that CF is not what it used to be, that Bautista would be fine.

      That same week the team caring for Bautista explained everything better: central line, blood tests, X-rays, elastase, enzymes, vitamins, nebulization, kinesiology. Soon came doctors asking questions, bureaucracy etc. It was a very difficult 15 days, during which many times Bautista’s parents asked themselves: “Why him? What did we do wrong? Why does he have to suffer so much?”

      Jessica sees the strength and courage that her son has, and it feels incredible to witness. Daily, Jessica and her family make sure Bautista feels loved and like the child he is.

      Jessica, Bautista is so lucky to have such a courageous mom!

      Now back to our CF Community: How have you managed your own journey after diagnosis? How does it feel to have to undergo multiple treatments and tests?

      To read the rest of Jessica’s story, and read more about courageous Bautista, click here.

      Our #31DaysOfCF initiative is running for the entire month of May. Each day, we are featuring a different story, and a different view of life with CF. To read all of the stories, visit our website.

    • #18457
      Paul met Debbie
      Participant

      What a great picture of Bautista!

      Treatments are part and parcel of CF. I absorbed my treatments in my daily life to the extend that it doesn’t feel like “doing” anymore, it goes by itself. In the course of my 58 years with CF I learned how flexible I can get with this without harming, which depends on the sort of medication. CF is relatively unforgiving in this, but there is some room for maneuvering nevertheless. Knowing the approximate boundaries is liberating. Some doctors are wise enough to know this too.

      I like to do as few tests as possible. I don’t do tests that are for the record only and only accept tests that can have a direct influence on the actual treatment plan. And I prefer to test at home (lungfunction, saturation) and via my family doctor (blood/urine tests), in stead of in the hospital. This way I saved a lot of time and energy. And in case of emergency, my family doctor is closest anyway.

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