Recent content by benthyr123

  1. B

    Phase 3 results for VX-659 triple combo

    It will be life changing...I'm in this study. It's all good 👍🏼
  2. B

    Medicare vs Medicare Advantage

    Do you use an Advantage plan? I'm trying to figure out the best options
  3. B

    Medicare vs Medicare Advantage

    Does anyone have insight to changing plans? You seem to need a masters degree to navigate all the information. I have had original Medicare for at least 15 years...wondering how many of us use MedicareAdvantage , if any
  4. B

    Medicare- Is there ANY way to get HOME IVs covered?

    Home IV therapy I'm really curious about this. I have always bitched to my doctor that 2 weeks in the hospital is putting me at more risk than home treatment. Since entering Medicare...I've had to stick it out in the hospital with triple the costs...that's government policy for you! My...
  5. B

    Nebulized Tobi vs. Tobi Podhaler

    I can tolerate nebulized Tobi well...tried the Podhaler and ended up hospitalized because of bronchospasms. I haven't gone back to Tobi since. I do believe it is an individual thing since many people use it.
  6. B

    Achromobacter denitrificans

    I don't think so...the Achromobacter I have has grown. I'm told I'll never get rid of it. I don't think I've ever cultured the other...I've never heard of the drugs you are using...interesting. I've always been given Tobi and Ceftaz....
  7. B

    How do you avoid the pity party when you tell people you have CF?

    I take this opportunity to educate people. The more people that know and understand what CF is, the better. I'll admit that I didn't always do this, but I'm 51 now so I can say what I want. I have never gotten pity from anyone....I feel I've gotten respect for explaining my circumstances and my...
  8. B

    Achromobacter denitrificans

    I have also cultured this in March...seems to be growing, but resistant to everything known to man.
  9. B

    Oldest Person With CF

    I would love to see a group for older CF patients....we have a great deal of experience to draw on.
  10. B

    VibraLung Review

    If you can feed yourself you can use this. It's so easy and lightweight. I think it's actually ideal for kids...cool sounds and such. My vest is useless and this device is portable and small
  11. B

    Have you stopped Orkambi because of side effects?

    I was in the Traffic/ Transport study. Basically took the real drug for 8 months when it became FDA approved I switched to "Orkambi" in July 2015. I started the trial with an FEV1 of 48%. I was hospitalized once and took Ceftaz and Tobi. I noticed an increase in headaches the first day I took...
  12. B

    Breast enlargement?

    Love this!
  13. B

    Hip Replacement

    I'm headed down this road to a joint replacement. Has anyone on this site had one? There is NO information avail anywhere on this subject. I'm praying to get this done under a spinal, but I doubt that will happen. Thoughts? I'm 51, female, FEV1 45, DDF508, retired.
  14. B

    Anyone have info on joint replacement for someone w/CF?

    I'm facing this also...I see there were no replies. I CAN'T be the only one who is about to embark on this. Thoughts? I'm going to try to have this done with a spinal, but I'm doubtful they will agree to this.
  15. B

    For people taking Orkambi

    I should have elaborated more...sorry. I'm 51, my baseline has been in the upper 40's for the last 7 years..even reaching 51% shortly after taking kalydeco (the first Vertex study) I'm not new to Vertex...I believe in them totally! I just don't think this combination is for me. I was in the...
Top