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    • #17198
      Jenny Livingston
      Keymaster

      At what age did you begin taking over CF responsibilities like preparing your own nebs, sterilizing neb cups, or administering your own treatments? What about making appointments, scheduling prescription refills, or dealing with insurance companies? Prior to adulthood, were you involved in all aspects of your CF care?

      If you are a caregiver, what responsibilities does your child with CF oversee themselves? Do they know the names/purposes of their medications? Are they responsible for their own physio? When and how do you plan to transfer certain responsibilities into their hands?

      I’d love to hear more about your experience regarding how and when responsibilities shift from the parent to the person with CF (if you can remember, that is — I actually can’t). What has your experience been?

    • #17203
      Paul met Debbie
      Participant

      I left home to study at university when I was 18. This was the perfect moment to switch my pediatrician for a pulmonologist and start managing my own cf-agenda fully. I didn’t start nebulizing until 25.

      Before that, I always managed my own pills as long as I can remember, although my parents took care of prescription refills until I left the house. In that time, it mostly was about the pancreas enzymes and an occasional antibiotic.  And some ENT problems that had to be solved surgically. Before my 18th, I travelled to my pediatrician once a year, together with my mother. We always combined this with a visit to my elder sister, who studied law in the same city. So I remember most of these occasions as a family visit rather than as a doctors appointment.

      Looking back, this transition from parental care to complete self management was a smooth one, health-wise that is. Growing older, the treatments became more elaborate but it was a step-by-step process as well, so it never felt too complicated.

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