Recent content by stephen

  1. stephen

    Our Survey Results!

    Thanks. The survey results are very interesting.
  2. stephen

    Portable Nebulizers

    In the past when traveling I've used a Pari Trek S for both Hypersal and Pulmozyme. The battery was good for up to five treatments, depending on the treatment time. I've also used a Pari eFlow for Hypersal, keeping separate Altrea handsets just for that purpose. My understanding is the eFlow...
  3. stephen

    Vera, I was very saddened and surprised to hear about the passing of Jeannie Ricci. She will...

    Vera, I was very saddened and surprised to hear about the passing of Jeannie Ricci. She will be missed on this forum, and at CF Roundtable. Like her, I was also on Kalydeco off-label for quite a while. I had been in contact with her several times about our experiences. Please extend my...
  4. stephen

    Colistin for home infusion-do you mix it yourself?

    Last year I too was put on Home IV Colistimethate, together with Meropenem. The Colistimethate had to be reconstituted and infused every six hours using an IV bag. This was very incontinent. I spoke to my doctor and she switched the Colistimethate to Piperacil-Tazobact. (I too can’t use...
  5. stephen

    Treatment time tobramycin

    I’m not using TOBI anymore, but during the many years I did, the treatments took less than 15 minutes. When they started taking longer, something was wrong. Usually it was a leak in the tubing between the compressor and nebulizer.
  6. stephen

    Moving to NY, looking for CF center for daughter

    I can only speak about Adult CF Centers. I would highly recommend the Adult Center at Columbia University, and Dr Emily DiMango! Although it’s not my primary center now, it was in the past and now is my backup. It’s located in Manhattan. For convenience reasons, I currently use the LIJ...
  7. stephen

    Vertex Patient Assistance Program

    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 on Kalydeko off-label for a number of years. My drug plan also initially approved it for only a limited...
  8. stephen

    Phase 3 results for VX-445 triple combo

    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 for the new drug. I would expect the same may be true for the "triple combination"as long as...
  9. stephen

    Phase 3 results for VX-445 triple combo

    Eric, I think it means they are applying for a New Drug Approval (NDA). Then it takes months for the approval to be granted.
  10. stephen

    Phase 3 results for VX-445 triple combo

    I wonder if this will replace Kalydeco, Orkambi, and Symdeko, the way Symdeko has replaced Kalydeco in most/many cases.
  11. stephen

    Best nebulizer recommended for Tobi and Pulmozyme

    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 easily damaged. I remember reading that the ampules should not be dropped because the shock can...
  12. stephen

    Cayston Equipment?

    I rinse the "connector" on the Nebulizer Connection Cord with hot water when it becomes sticky.
  13. stephen

    Newly Diagnosed

    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 self a big disservice. Just about everyone in this forum is being seen at an accredited center.
  14. stephen

    Newly Diagnosed

    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 California. https://www.cff.org/ccd/ Regardless of your symptoms, an accredited CF Care Center is...
  15. stephen

    Pariboy Pump and Tobramycin issue

    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 minutes and let the TOBI settle. As I remember, it happened with more than one nebulizer pump, neither...
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