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  • Secret Weird Positives of Treatment Routines

    Posted by bailey-anne-vincent on April 7, 2021 at 8:51 am

    Yesterday I asked about negatives or downsides of “secret CF things” and symptoms, but today I’m wondering…

    What is something you secretly find comforting or not-so-bad when it comes to CF treatment, even if it’s a little weird?

    I’ll share mine: I don’t mind how hypertonic or Tobi make me feel. I know a lot of people think that high numbers of Hypersal are awful and hurt, but (for me) I love how much they work. I even love 10%! I like feeling like I’m getting as much bang for my buck as possible. Hypersal makes me cough and get a lot of mucus up (the scratchier the better) and Tobi (despite its side effects) always made me feel better.

    What about you?

    judy-moreland replied 2 years, 12 months ago 3 Members · 2 Replies
  • 2 Replies
  • paul-met-debbie

    Member
    April 10, 2021 at 10:19 am

    I love my nebulizing sessions. I see them as meditations.

    Since I started, I have meditated for over 30.000 hours. It really cleared my mind and taught me who I really am beyond it. I don’t know if I would have had the stamina to meditate so much and consistently without cf and probably would still be running after my minds every whim like an idiot.

    But because of cf, I now consider myself a quiet and happy fool.

  • judy-moreland

    Member
    April 14, 2021 at 9:30 am

    Bailey, Good for you that you love hypertonic saline and TOBI for how much they work. I hated taking TOBI each time I had to take it because 25 minutes twice a day for 28 days was hard for me. Also hate cleaning the nebs, and when on TOBI, there are LOTS of extra nebs. I put them in the dishwasher, but as I use the Pari nebs, I always feel that I have to rinse the bottom of the neb part which contains the medicine because it is inverted in the dishwasher and tends to fill up with water (which may be not the cleanest water in the dishwasher cycle). My respiratory therapist told me that rinsing parts of the nebs in tap water isn’t good because tap water isn’t sterile or sanitized, but I have continued to do this for the abovementioned reason.

    I agree that hypertonic saline is a wonderful way to cough up the junk in our lungs. I have been using it for over 12 years now, and for me, it’s more helpful in clearing my lungs than the vest, but I do both at the same time. A different respiratory therapist seemed surprise that I thought hypertonic saline was a better expectorant than the vest. The vest seemed to be the gold standard in my clinic for getting rid of mucus, but hypertonic saline rates #1 for me. I just wish I would do it every day as I should. Just don’t like doing the treatment, and sometimes the coughing and vest give me back aches. The main reason I don’t do it, though, is not the back pain, which doesn’t happen most of the time. It’s just that I’m so sick of treatments.

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