Cystic Fibrosis Forum (EXP)

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  1. L

    Anyone need Schandi shakes?..I have a bunch of strawberry flavor i dont drink and looking to help another Cfer out ;)

    Anyone need Schandi shakes?..I have a bunch of strawberry flavor i dont drink and looking to help another Cfer out ;) I used to get them long ago through Axcan/CF Services Pharmacy, when they had the Ultrase program, until Massachusetts was no longer eligible for that. my CF Clinic sometimes...
  2. L

    Anyone need Schandi shakes?..I have a bunch of strawberry flavor i dont drink and looking to help another Cfer out ;)

    Anyone need Schandi shakes?..I have a bunch of strawberry flavor i dont drink and looking to help another Cfer out ;) I used to get them long ago through Axcan/CF Services Pharmacy, when they had the Ultrase program, until Massachusetts was no longer eligible for that. my CF Clinic sometimes...
  3. L

    How do you travel with tobi & pulmozyme?

    All my meds go into my Vest bag, as there is enough room for all of them, plus my nebulizer machine (having a small neb machine is cool) and my Vest. Pulmozyme, Novalog, and Lantus - I do not do the refrigeration till I get to the destination, and usually everything gets put together in the van...
  4. L

    How do you travel with tobi & pulmozyme?

    All my meds go into my Vest bag, as there is enough room for all of them, plus my nebulizer machine (having a small neb machine is cool) and my Vest. Pulmozyme, Novalog, and Lantus - I do not do the refrigeration till I get to the destination, and usually everything gets put together in the van...
  5. L

    Bad news from Vertex

    I have Delta F508 and I was never asked to participate in either of the studies.
  6. L

    Bad news from Vertex

    I have Delta F508 and I was never asked to participate in either of the studies.
  7. L

    Anyone need Schandi shakes?..I have a bunch of strawberry flavor i dont drink and looking to help another Cfer out ;)

    Anyone need Schandi shakes?..I have a bunch of strawberry flavor i dont drink and looking to help another Cfer out ;) I would take them, but I have never been particularly fond of strawberry flavor for weight drinks, it is always mixed wrong, plus the Scanidshake strawberry flavor isn't great...
  8. L

    Anyone need Schandi shakes?..I have a bunch of strawberry flavor i dont drink and looking to help another Cfer out ;)

    Anyone need Schandi shakes?..I have a bunch of strawberry flavor i dont drink and looking to help another Cfer out ;) I would take them, but I have never been particularly fond of strawberry flavor for weight drinks, it is always mixed wrong, plus the Scanidshake strawberry flavor isn't great...
  9. L

    How do you travel with tobi & pulmozyme?

    When I travel, I have the luxury of not having to take drastic measures. For my tournaments with Special Olympics, usually I am in a hotel room for Winter Games and in a refrigerator equipped dorm room for Summer Games because not only do my nebs have to be refrigerated, my insulin does too...
  10. L

    How do you travel with tobi & pulmozyme?

    When I travel, I have the luxury of not having to take drastic measures. For my tournaments with Special Olympics, usually I am in a hotel room for Winter Games and in a refrigerator equipped dorm room for Summer Games because not only do my nebs have to be refrigerated, my insulin does too...
  11. L

    CFCareForward

    The one I got included the Ensure, Pediasure, and bar choices. I do however have a friend in CT and would have to ask him if he wants to help me get the vitamins, since my clinic has decided to not send over a new script for them in months.
  12. L

    CFCareForward

    The one I got included the Ensure, Pediasure, and bar choices. I do however have a friend in CT and would have to ask him if he wants to help me get the vitamins, since my clinic has decided to not send over a new script for them in months.
  13. L

    Sinus/Nasal Issues

    The snot sucker was the one thing my grandmother always knew to use when I couldn't breathe right. I have set the wheels in motion to have only my second upper sinus cleansing since 1997 (first was 1999). I am having the same ENT surgeon do this one as the one in 1999. I personally requested him...
  14. L

    Sinus/Nasal Issues

    The snot sucker was the one thing my grandmother always knew to use when I couldn't breathe right. I have set the wheels in motion to have only my second upper sinus cleansing since 1997 (first was 1999). I am having the same ENT surgeon do this one as the one in 1999. I personally requested him...
  15. L

    CFCareForward

    The CFCareForward program, known for the offering of supplements and nutritional drinks, as well as the Creon Discount Program, is now available in<strong> limited participation</strong> in Massachusetts. The restrictions are as follows 1. Mass residents are not qualified for the Creon discount...
  16. L

    CFCareForward

    The CFCareForward program, known for the offering of supplements and nutritional drinks, as well as the Creon Discount Program, is now available in<strong> limited participation</strong> in Massachusetts. The restrictions are as follows 1. Mass residents are not qualified for the Creon discount...
  17. L

    World of Warcraft

    I have WOW and the first expansion pack, problem is I have not even tried to get on due to not being able to pay the monthly cost plus other issues concerning my internet connection.
  18. L

    World of Warcraft

    I have WOW and the first expansion pack, problem is I have not even tried to get on due to not being able to pay the monthly cost plus other issues concerning my internet connection.
  19. L

    Epic Systems iPhone/iPad/iOS Device App - Must have for CF'ers

    Next time I go to clinic, I need to find out if Baystate has the system in place. I have no idea how to get to it on their website.
  20. L

    Epic Systems iPhone/iPad/iOS Device App - Must have for CF'ers

    Next time I go to clinic, I need to find out if Baystate has the system in place. I have no idea how to get to it on their website.
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