Cystic Fibrosis Forum (EXP)

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  1. H

    Nebulizer cup confusion

    The Pari cups are a good choice for pretty much any nebulized medication- Sprint were developed after the Pari LC's but work the same way, slightly faster. The regular sidestream cup is approved for pulmozyme when you have a 50psi compressor, so the sprint cups or the breath-enhanced Sidestream...
  2. H

    Nebulizer cup confusion

    The Pari cups are a good choice for pretty much any nebulized medication- Sprint were developed after the Pari LC's but work the same way, slightly faster. The regular sidestream cup is approved for pulmozyme when you have a 50psi compressor, so the sprint cups or the breath-enhanced Sidestream...
  3. H

    Back in the hospital :'(

    Re. the autism and transplant... it may not even come down to being their decision. Many centers will disqualify someone from eligibility for transplant if they have other co-existing conditions like this. As wrong as it sounds, there was a recent case where CHOP denied a young girl from being...
  4. H

    Back in the hospital :'(

    Re. the autism and transplant... it may not even come down to being their decision. Many centers will disqualify someone from eligibility for transplant if they have other co-existing conditions like this. As wrong as it sounds, there was a recent case where CHOP denied a young girl from being...
  5. H

    Sinus/Nasal Issues

    When Shawn had his sinus scope/exam last month, it did show considerable inflammation in the area immediately surrounding his nose (I can't remember the technical anatomical term) and one side was quite obstructed- he can barely breathe out of one nostril. However, his sinuses themselves are...
  6. H

    Sinus/Nasal Issues

    When Shawn had his sinus scope/exam last month, it did show considerable inflammation in the area immediately surrounding his nose (I can't remember the technical anatomical term) and one side was quite obstructed- he can barely breathe out of one nostril. However, his sinuses themselves are...
  7. H

    Pulmozyme

    Emily's fev1 went up 15% when she started Pulmozyme and we saw no negative effects whatsoever. <img src="i/expressions/face-icon-small-smile.gif" border="0">
  8. H

    Pulmozyme

    Emily's fev1 went up 15% when she started Pulmozyme and we saw no negative effects whatsoever. <img src="i/expressions/face-icon-small-smile.gif" border="0">
  9. H

    Need for Better Searching capabilities

    You're right... Searching when selecting 'message' just gives you back a result with the message in expanded form vs. a list of topics. I hadn't realized we had lost the option to search both ways (topic vs message body.) A fully functional advanced search is definitely vital, we have such a...
  10. H

    Need for Better Searching capabilities

    You're right... Searching when selecting 'message' just gives you back a result with the message in expanded form vs. a list of topics. I hadn't realized we had lost the option to search both ways (topic vs message body.) A fully functional advanced search is definitely vital, we have such a...
  11. H

    Need for Better Searching capabilities

    I entered as a search keyword 'indemnity' and selected display as TOPIC, not message, and got back a short list of thread titles. Eta> sorry... Tried to post a link to the search results, but it was not a valid URL. <img src="i/expressions/face-icon-small-sad.gif" border="0">
  12. H

    Need for Better Searching capabilities

    I entered as a search keyword 'indemnity' and selected display as TOPIC, not message, and got back a short list of thread titles. Eta> sorry... Tried to post a link to the search results, but it was not a valid URL. <img src="i/expressions/face-icon-small-sad.gif" border="0">
  13. H

    Does your text run off the page in some posts/threads?

    If someone posts a huge line of unbroken text it will sometimes make text run offscreen. Posting huge photos in the sig line is known to do it as well. Eta> I can't remember for sure since its not there now, but I am almost positive the scroll bar is there- but wayyyyy on the bottom of the...
  14. H

    Does your text run off the page in some posts/threads?

    If someone posts a huge line of unbroken text it will sometimes make text run offscreen. Posting huge photos in the sig line is known to do it as well. Eta> I can't remember for sure since its not there now, but I am almost positive the scroll bar is there- but wayyyyy on the bottom of the...
  15. H

    G tube options????

    Emily has had a button placed two ways. There is no stomach moving or reshaping in any way. The first way was endoscopically- the surgeon put the tube down the throat and pulled it through her stomach wall. This is exactly how the "long" PEG tubes are placed, but she had a button placed this...
  16. H

    G tube options????

    Emily has had a button placed two ways. There is no stomach moving or reshaping in any way. The first way was endoscopically- the surgeon put the tube down the throat and pulled it through her stomach wall. This is exactly how the "long" PEG tubes are placed, but she had a button placed this...
  17. H

    DF508ers who participated in VX-770 trials

    Amy, you may have missed my question in amidst the many other posts here- are you going to have any baseline testing at clinic (sweat test, pft's etc) before starting the new med and again after a month or two? Esp given so few people with other mutations will be able to get approval for it, it...
  18. H

    DF508ers who participated in VX-770 trials

    Amy, you may have missed my question in amidst the many other posts here- are you going to have any baseline testing at clinic (sweat test, pft's etc) before starting the new med and again after a month or two? Esp given so few people with other mutations will be able to get approval for it, it...
  19. H

    DF508ers who participated in VX-770 trials

    Amy, I'm curious to know as well if you will be getting a sweat test first as well to assess yourself on some kind of clinical level, get baseline pft's, weight etc at clinic.
  20. H

    DF508ers who participated in VX-770 trials

    Amy, I'm curious to know as well if you will be getting a sweat test first as well to assess yourself on some kind of clinical level, get baseline pft's, weight etc at clinic.
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