Cystic Fibrosis Forum (EXP)

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Recent content by jmiller

  1. J

    M abscessus

    Thank you for all of these responses -- I had a long talk with my doctor yesterday and it turns out I have only cultured myco 2 times since 2009 (with many negatives between). My doc follows the guidelines of National Jewish as well as the CF Foundation recommendations and he said that they...
  2. J

    M abscessus

    Thank you for all of these responses -- I had a long talk with my doctor yesterday and it turns out I have only cultured myco 2 times since 2009 (with many negatives between). My doc follows the guidelines of National Jewish as well as the CF Foundation recommendations and he said that they...
  3. J

    M abscessus

    Thank you all for your repsponses! Joni I will write back to your PM later tonight -- in the middle of work <img src="i/expressions/face-icon-small-smile.gif" border="0"> I found out that I have actually only cultured this twice - once in 2009 and once in Feb of this year. For those who have...
  4. J

    M abscessus

    Thank you all for your repsponses! Joni I will write back to your PM later tonight -- in the middle of work <img src="i/expressions/face-icon-small-smile.gif" border="0"> I found out that I have actually only cultured this twice - once in 2009 and once in Feb of this year. For those who have...
  5. J

    M abscessus

    I've culturued m abscessus 3 times in the past 4 years or so. I have a repeat embolization next week for hemoptysis and my doc thinks that ifthe bleedingcomes back quickly we may need to consider treating the NTM. I got my senstivities back from the Feb culture that grew it and there are only a...
  6. J

    M abscessus

    I've culturued m abscessus 3 times in the past 4 years or so. I have a repeat embolization next week for hemoptysis and my doc thinks that ifthe bleedingcomes back quickly we may need to consider treating the NTM. I got my senstivities back from the Feb culture that grew it and there are only a...
  7. J

    Kalydeco off-label: My first 4 days

    One more thing -- reading Cindy's post made me realize I hadn't shared how my exercise has been going. First I should say that I have been running continuously (with breaks for lung bleeds and child births) for about 15 years now. I do between 5-7 miles most days. Usually I will be good for...
  8. J

    Kalydeco off-label: My first 4 days

    One more thing -- reading Cindy's post made me realize I hadn't shared how my exercise has been going. First I should say that I have been running continuously (with breaks for lung bleeds and child births) for about 15 years now. I do between 5-7 miles most days. Usually I will be good for...
  9. J

    Off Label Kalydeco-My follow up Appt.

    How incredible! Words cannot describe all that this must mean for you and Sam and Ella!
  10. J

    Off Label Kalydeco-My follow up Appt.

    How incredible! Words cannot describe all that this must mean for you and Sam and Ella!
  11. J

    Kalydeco off-label: My first 4 days

    Cindy, Your last comment is something that I have noticed too -- MUCH more throat-clearing. It's like the mucus just comes out of nowhere (or at least without alot of coughing). I remember the same thing about 10 years ago (when my CF began to become more of an issue). I would do alot of...
  12. J

    Kalydeco off-label: My first 4 days

    Cindy, Your last comment is something that I have noticed too -- MUCH more throat-clearing. It's like the mucus just comes out of nowhere (or at least without alot of coughing). I remember the same thing about 10 years ago (when my CF began to become more of an issue). I would do alot of...
  13. J

    Kalydeco off-label: My first 4 days

    I am DF508 and 2184delA. I wanted to try Kalydeco for a number of reasons, most of which have been expressed by others on this forum. I called my ins abouta month ago and they offered coverage witha $45 co-pay. I then convinced my physcian to allow me to give it a go. He said that we should...
  14. J

    Kalydeco off-label: My first 4 days

    I am DF508 and 2184delA. I wanted to try Kalydeco for a number of reasons, most of which have been expressed by others on this forum. I called my ins abouta month ago and they offered coverage witha $45 co-pay. I then convinced my physcian to allow me to give it a go. He said that we should...
  15. J

    To all the bleeders out there...

    Thanks Becki and and Rebecca (Becky II?) <img src="i/expressions/face-icon-small-smile.gif" border="0"> I definitely think inflammation plays into my bleeds -- some combination of: CF (duh) + hormones + inflammation + infection = bleed I totally agree Becki that not knowing the when/where...
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