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  1. Replies
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    Runnergirl227, I have some thoughts: Are...

    Runnergirl227,

    I have some thoughts:

    Are you sure Kalydeco will not be covered next year even after you meet the deductible? From what you indicated, they are covering it this year.

    I wea...
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    When Symdeko was approved, my CF center gave...

    When Symdeko was approved, my CF center gave their patients who were on Kalydeco the choice of switching to Symdeko. Among the reasons was that it would cost less. This was due to the larger market...
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    Eric, I think it means they are applying for a...

    Eric,

    I think it means they are applying for a New Drug Approval (NDA). Then it takes months for the approval to be granted.
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    I wonder if this will replace Kalydeco, Orkambi,...

    I wonder if this will replace Kalydeco, Orkambi, and Symdeko, the way Symdeko has replaced Kalydeco in most/many cases.
  5. Referring to what "preet" wrote above: This...

    Referring to what "preet" wrote above:

    This may have been mentioned before, but I believe Pulmozyme should definitely NOT be administered with an ultrasonic nebulizer.

    Pulmozyme molecules are...
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    I rinse the "connector" on the Nebulizer...

    I rinse the "connector" on the Nebulizer Connection Cord with hot water when it becomes sticky.
  7. Replies
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    Meggy, Is it at an accredited CF Center? That...

    Meggy,

    Is it at an accredited CF Center? That should be easy enough to check by going to the Cycsic Fibrosis Foundation website or to the link provided above.

    If it's not, you're doing your...
  8. Replies
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    I'll beat Printer and tell you to find a Cystic...

    I'll beat Printer and tell you to find a Cystic Fibrosis Foundation accredited CF Care Center! Follow the link below and enter your location. There are a number of accredited centers in northern...
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    Interesting you mentioned this. While it's...

    Interesting you mentioned this.

    While it's been a long time since I've used TOBI, I distinctly remember this occasionally happening. When it did happen, I would turn the pump off for a few...
  10. Asmith62, It would be surprising to me if...

    Asmith62,

    It would be surprising to me if many/any people with one Class 1 and one Class 2 mutations are pancreatic sufficient.

    To simplify:
    Class 1 mutations do not produce any CFTR protein. ...
  11. Thread: symdeco

    by stephen
    Replies
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    1,927

    mstein, I switched to Symdeko this past March,...

    mstein,

    I switched to Symdeko this past March, after taking Kalydeco for four years. When I started the Kalydeco, I too brought up loads of "crap". The volume of phlegm was MUCH more than usual,...
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    A Look Into the Future

    While advances like this are only dreams right now, hopefully they are not as far off as we may think. Let's Dream!

    "3D bioprinted lungs to be available for global transplants"

    "Israel’s...
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    Rebjane, If you haven't already, check the...

    Rebjane,

    If you haven't already, check the tubing. This is often the cause of the problem, not the compressor.

    The pulsing pressure can cause small cracks to develop over time. These cracks...
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    Yes - I have significantly reduced treatments. ...

    Yes - I have significantly reduced treatments.

    When I started Kalydeco over four years ago, I was doing so well that I decided to try stopping everything else. My doctor said he had another...
  15. Replies
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    Since using Kalydeco/Symdeko, I usually don't use...

    Since using Kalydeco/Symdeko, I usually don't use Hypertonic Saline when traveling. I do however take an eFlow and a few heads that I keep for Saline only, if the need arises.

    Before...
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    For me, nothing. I've intentionally tried...

    For me, nothing. I've intentionally tried skipping doses a number of times. It takes missing three doses before I begin to notice changes. Then, a productive cough starts to reappear, producing...
  17. Replies
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    Pari eFlow Aerosol Head Cleaner

    If anyone has used the PARI EasyCare Cleaning Aide for eFlow & eRapid Aerosol Heads, I would be interested to hear your experiences with it.
    ...
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    I've been using it for five months now, and...

    I've been using it for five months now, and haven't detected any adverse side effects.
  19. Thread: CF in the City

    by stephen
    Replies
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    amlorr94, While there are a number of good...

    amlorr94,

    While there are a number of good accredited Adult CF Centers in the New York area, I would highly recommend the one at Columbia University, if it’s convenient for you to get to.

    I had...
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    ethhan508, I agree that not all drugs react...

    ethhan508,

    I agree that not all drugs react with each other in a neutralizing way. However the reason to wait before nebulizing antibiotics after using Pulmozyme is to allow it to break down...
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    A number of years ago I read that it took...

    A number of years ago I read that it took Pulmozyme about 30 minutes to break down the mucus. Therefore, nothing should be nebulized for 30 minutes following Pulmozyme to realize its full benefit.
  22. Replies
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    I’ve been on Symdeko for about 6 weeks now. The...

    I’ve been on Symdeko for about 6 weeks now. The marked improvement in my breathing, which I experienced during the first few days, has reminded constant.

    I seem to be experiencing some mild...
  23. Replies
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    I switched to Symdeko from Kalydeco about four...

    I switched to Symdeko from Kalydeco about four weeks ago. No sweat test. Just culture and Full PFT.

    Good luck. It significantly improved my breathing.
  24. Replies
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    My advice for now is to definitely go for Symdeko...

    My advice for now is to definitely go for Symdeko if you are eligible.

    With this weekend’s holidays for most of us fast approaching (Passover and Easter) I’m keeping this brief for now.

    After...
  25. Replies
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    Switch From Kalydeco to Symdeko

    Has anyone switched from Kalydeco to Symdeko? I’m about to makethe change and am wondering what others have experienced.

    During a recent CF Centervisit my doctor mentioned there may be some...
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