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  1. stephen


    I'm fortunate to be living near a few good Adult CF Centers. If I didn't, I'd travel to an Accredited CF center several times a year but primarily see a local pulmonologist. The two can work together. I did this for a while. It's very important to keep attending an Accredited CF Center.
  2. stephen

    Hypertonic Saline Backordered

    When I first started using Hypertonic Saline in 2005, I use to “mix” it. (I’m not sure if they had 7% at the time.) My doctor prescribed 10 ml vials of both 3% and 10% saline. I would mix 2 ml of the 3% with 3 ml of the 10% to get 5 ml of approximately 7%. The 3% vials provided 3 doses and...
  3. stephen

    Covid booster shots

    I got a third Moderna shot. It was approved, and actually recommended by several of my doctors including my immunologist and CF doctor.
  4. stephen

    Covid booster shots

    I got a booster 6.5 months after the second Maderna shot. If it doesn’t hurt, why not. 79 years old, FEV1 about 42%.
  5. stephen

    How do you sleep?

    No advice - but just wishing you all the best.
  6. stephen

    do you have medicare and are on trikafta?

    There is an income limit! Also some co-pay assistance programs are not applicable if you have Medicare. I don’t qualify and my monthly co-pay is $1100. That’s 5% of the drug’s cost. (I’m not complaining.)
  7. stephen

    Aerosol Heads for Nebulizers

    Pari makes a simple device to clean and unclog the microscopic holes in the eRapid Aerosol Heads. It costs less than $20 and is simple to use. I've found it very effective. It's called the Pari EasyCare. Just google it.
  8. stephen

    Our Survey Results!

    Thanks. The survey results are very interesting.
  9. 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...
  10. 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...
  11. 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...
  12. 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.
  13. 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...
  14. 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...
  15. 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...
  16. 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.
  17. 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.
  18. 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...