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  1. D

    Infuriated!..Respiratory nurse takes my neb cups and washes them in sink and goes to put them in the bag hanging for next treatment????

    Infuriated!..Respiratory nurse takes my neb cups and washes them in sink and goes to put them in the bag hanging for next treatment???? Yeah, I'm surprised they wash yours. Mine don't get washed. And they do the tobi in the wrong neb. I don't usually fight it because I'm on IVs already anyway.
  2. D

    Infuriated!..Respiratory nurse takes my neb cups and washes them in sink and goes to put them in the bag hanging for next treatment????

    Infuriated!..Respiratory nurse takes my neb cups and washes them in sink and goes to put them in the bag hanging for next treatment???? Yeah, I'm surprised they wash yours. Mine don't get washed. And they do the tobi in the wrong neb. I don't usually fight it because I'm on IVs already anyway.
  3. D

    Vertex drugs show promise with DF508

    So, my mutations are DF508 and Q493X (I'm assuming that means I don't have "two copies of [...] the F508del mutation"). Given that, does that mean that these drugs will never be of use to me if they make it through the pipeline? Sorry if the answer is obvious to some, but I really have no...
  4. D

    Vertex drugs show promise with DF508

    So, my mutations are DF508 and Q493X (I'm assuming that means I don't have "two copies of [...] the F508del mutation"). Given that, does that mean that these drugs will never be of use to me if they make it through the pipeline? Sorry if the answer is obvious to some, but I really have no...
  5. D

    Vertex drugs show promise with DF508

    So, my mutations are DF508 and Q493X (I'm assuming that means I don't have "two copies of [...] the F508del mutation"). Given that, does that mean that these drugs will never be of use to me if they make it through the pipeline? Sorry if the answer is obvious to some, but I really have no...
  6. D

    Question about weather...

    For me, the heat dehydrates me and can loosen the mucus, and I seem to feel better in the cooler weather. I've lived in SoCal for 8 years, 5 years in Malibu, and 3 years just over the hill about 20 miles inland. That 20 miles makes a difference... I felt better in Malibu. There is probably...
  7. D

    Question about weather...

    For me, the heat dehydrates me and can loosen the mucus, and I seem to feel better in the cooler weather. I've lived in SoCal for 8 years, 5 years in Malibu, and 3 years just over the hill about 20 miles inland. That 20 miles makes a difference... I felt better in Malibu. There is probably...
  8. D

    Question about weather...

    For me, the heat dehydrates me and can loosen the mucus, and I seem to feel better in the cooler weather. I've lived in SoCal for 8 years, 5 years in Malibu, and 3 years just over the hill about 20 miles inland. That 20 miles makes a difference... I felt better in Malibu. There is probably...
  9. D

    Question about weather...

    For me, the heat dehydrates me and can loosen the mucus, and I seem to feel better in the cooler weather. I've lived in SoCal for 8 years, 5 years in Malibu, and 3 years just over the hill about 20 miles inland. That 20 miles makes a difference... I felt better in Malibu. There is probably...
  10. D

    Question about weather...

    For me, the heat dehydrates me and can loosen the mucus, and I seem to feel better in the cooler weather. I've lived in SoCal for 8 years, 5 years in Malibu, and 3 years just over the hill about 20 miles inland. That 20 miles makes a difference... I felt better in Malibu. There is probably...
  11. D

    CREON OR ULTRASE?

    I switched from ultrase to creon, but i'm switching back because while both brands come with free vitamins and high calorie drinks, i like the scandishake better than the CIB. Yes, I'm also doing the boost plus. That stuff beats all the others, tastewise, in every nurse "blind sampling", and...
  12. D

    CREON OR ULTRASE?

    I switched from ultrase to creon, but i'm switching back because while both brands come with free vitamins and high calorie drinks, i like the scandishake better than the CIB. Yes, I'm also doing the boost plus. That stuff beats all the others, tastewise, in every nurse "blind sampling", and...
  13. D

    CREON OR ULTRASE?

    I switched from ultrase to creon, but i'm switching back because while both brands come with free vitamins and high calorie drinks, i like the scandishake better than the CIB. Yes, I'm also doing the boost plus. That stuff beats all the others, tastewise, in every nurse "blind sampling", and...
  14. D

    CREON OR ULTRASE?

    I switched from ultrase to creon, but i'm switching back because while both brands come with free vitamins and high calorie drinks, i like the scandishake better than the CIB. Yes, I'm also doing the boost plus. That stuff beats all the others, tastewise, in every nurse "blind sampling", and...
  15. D

    CREON OR ULTRASE?

    I switched from ultrase to creon, but i'm switching back because while both brands come with free vitamins and high calorie drinks, i like the scandishake better than the CIB. Yes, I'm also doing the boost plus. That stuff beats all the others, tastewise, in every nurse "blind sampling", and...
  16. D

    Overnight Feeds?

    I haven't read the other replies, but here's my experience. I did the pump for a few years, then the past 15 years, I've done gravity/free flow, which is 1000 ml over about 4 hours, maybe a little less (it DOES take some getting used to!!). Doing it this way, I wake up full, but don't throw up...
  17. D

    Overnight Feeds?

    I haven't read the other replies, but here's my experience. I did the pump for a few years, then the past 15 years, I've done gravity/free flow, which is 1000 ml over about 4 hours, maybe a little less (it DOES take some getting used to!!). Doing it this way, I wake up full, but don't throw up...
  18. D

    Overnight Feeds?

    I haven't read the other replies, but here's my experience. I did the pump for a few years, then the past 15 years, I've done gravity/free flow, which is 1000 ml over about 4 hours, maybe a little less (it DOES take some getting used to!!). Doing it this way, I wake up full, but don't throw up...
  19. D

    Overnight Feeds?

    I haven't read the other replies, but here's my experience. I did the pump for a few years, then the past 15 years, I've done gravity/free flow, which is 1000 ml over about 4 hours, maybe a little less (it DOES take some getting used to!!). Doing it this way, I wake up full, but don't throw up...
  20. D

    Overnight Feeds?

    I haven't read the other replies, but here's my experience. I did the pump for a few years, then the past 15 years, I've done gravity/free flow, which is 1000 ml over about 4 hours, maybe a little less (it DOES take some getting used to!!). Doing it this way, I wake up full, but don't throw up...
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