Cystic Fibrosis Forum (EXP)

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  1. K

    IV's & alcohol

    I have done it many times because I've never been told not to and it hasn't said anything about it on the prescription labeling (except when I was on flagyl).
  2. K

    IV's & alcohol

    I have done it many times because I've never been told not to and it hasn't said anything about it on the prescription labeling (except when I was on flagyl).
  3. K

    IV treatment

    I have done home IVs once, and at that time I was on IV Tobra and Ceftaz. The Tobra was once a day and it was in the ball that you mentioned. I would rinse the PICC with saline, then hook up the ball, and the med would dispense on its own over the course of about 45min (or maybe it was an hour)...
  4. K

    IV treatment

    I have done home IVs once, and at that time I was on IV Tobra and Ceftaz. The Tobra was once a day and it was in the ball that you mentioned. I would rinse the PICC with saline, then hook up the ball, and the med would dispense on its own over the course of about 45min (or maybe it was an hour)...
  5. K

    Boiling nebs?

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JENNYC</b></i> I have to ask a dumb question...what does adding vinegar do? <img src=""></end quote> I believe it changes the pH of the water, which makes it less likely that the minerals will settle out of the water.
  6. K

    Boiling nebs?

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JENNYC</b></i> I have to ask a dumb question...what does adding vinegar do? <img src=""></end quote> I believe it changes the pH of the water, which makes it less likely that the minerals will settle out of the water.
  7. K

    Boiling nebs?

    I think it's most likely mineral deposits from the boiled water. I had the same problem, so I started using a baby bottle steam sterilizer with distilled water. Vinegar may help remove the deposits.
  8. K

    Boiling nebs?

    I think it's most likely mineral deposits from the boiled water. I had the same problem, so I started using a baby bottle steam sterilizer with distilled water. Vinegar may help remove the deposits.
  9. K

    White Blood Cell Count

    Yeah, I think mine is always a little high. I always assumed it's because I'm chronically infected with Staph or Pseudo.
  10. K

    White Blood Cell Count

    Yeah, I think mine is always a little high. I always assumed it's because I'm chronically infected with Staph or Pseudo.
  11. K

    Obama & Healthcare

    Cindy, you stated a lot of what I am have been thinking about this whole heath care issue. I will admit that I have not read the bill, but I don't understand why people think it's socialized medicine. And I'm very surprised there hasn't been more discussion about the lifetime maximums on here...
  12. K

    vx 661 discussion moved

    I was wondering if she was going to have to delete her blog. My understanding is that people in a clinical trial can't share that info in a public forum, which is why people in clinical trials have always said, "PM me if you want more info" on here.
  13. K

    vx 661 discussion moved

    I was wondering if she was going to have to delete her blog. My understanding is that people in a clinical trial can't share that info in a public forum, which is why people in clinical trials have always said, "PM me if you want more info" on here.
  14. K

    Cayston Finger Slicing Club

    LOL. I feel like I have to use my teeth about 30% of the time.
  15. K

    Cayston Finger Slicing Club

    LOL. I feel like I have to use my teeth about 30% of the time.
  16. K

    Allergies kicking off infection

    I added Alkalol to my sinus rinses and that has helped a lot. Also, my ENT has me dissolve 4 singulair tablets in a saline nasal spray bottle and use that twice a day. But, I still get allergy-triggered sinus infections. Now I'm trying allergy shots, but it's only been 3 months, so it's too soon...
  17. K

    Allergies kicking off infection

    I added Alkalol to my sinus rinses and that has helped a lot. Also, my ENT has me dissolve 4 singulair tablets in a saline nasal spray bottle and use that twice a day. But, I still get allergy-triggered sinus infections. Now I'm trying allergy shots, but it's only been 3 months, so it's too soon...
  18. K

    To all the green smoothies drinkers...and anyone with pseudo!!

    Awesome! Thanks for sharing. You've already inspired me to drink 1-2 green smoothies every day - I'll have to add some red cabbage!
  19. K

    To all the green smoothies drinkers...and anyone with pseudo!!

    Awesome! Thanks for sharing. You've already inspired me to drink 1-2 green smoothies every day - I'll have to add some red cabbage!
  20. K

    Does anyone know if Kalydeco would work or can be tried on other mutation?

    In vitro studies have shown that it works on all gating mutations. It may also work on other mutations (specifically Class IV & V mutations) but studies have not been published.
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