Cystic Fibrosis Forum (EXP)

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  1. R

    any ideas on how long airway clearance systems last ?

    Yes, it's a hill rom 105. Brand new vests from hill rom have a lifetime warranty, ds has had a vest for about 12 years. And I think they've replaced it 4 times for sure, soon to 5.
  2. R

    any ideas on how long airway clearance systems last ?

    So my teen's vest stopped working tonight, wouldn't inflate properly. Pulled out the manual to call for a replacement and it said the machine should last about two years.
  3. R

    any ideas on how long airway clearance systems last ?

    DS' first brand new vest lasted about 3-4 years. Since it was new and had a lifetime warranty, Hill Rom replaced it. I suspect the replacements are refurbished. Nowdays they seem to last about 2 years. The last one they replaced was this past summer and it's started to make noise, but hasn't...
  4. R

    Nasal administration of antibiotics. With most Cfers we have pseudomonas in our sinus

    I seem to recall once upon a time someone using a sinus nebulizer. Looked like a regular pari compressor and neb cup one held up to their noses. Also previous posts on putting tobramycin in a sinus rinse, but not sure how much or how it was administered.
  5. R

    Hypersal/Hypertonic Saline not covered by insurance

    DS' doctor prescribed 7% sodium chloride for inhalation last fall with his albuterol. Previously he'd been on albuterol/atrovent nebs. They eliminated the atrovent. Seems like insurance (BCBS) doesn't cover hypertonic saline -- it's a noncovered, nonformulary prescription and therefore it...
  6. R

    Unvaccinated child in school class - help

    Hopefully your clinic will get back to you with some advice. I'm assuming the child isn't vaccinated due to personal reasons and the parents are using the religion card to get an exemption and not because the child has an underlying health issue such as an autoimmune disease in which vaccines...
  7. R

    Classic CF class 1 and 2 mutations, no symptoms

    With DS, his doctor indicated his baseline should be no cough. We were proactive and did chest physiotherapy. Mainly his symptoms were digestive and sinus, although he DID culture pseudomonas right away. He didn't cough, didn't cough up anything. Do this day he still doesn't cough up...
  8. R

    I could really use some help understanding

    I don't have any information on your son's mutations...I'm assuming what the doctor meant by "not turning into CF" was that they may not be symptomatic mutations. Is this doctor a CF doctor? If not, I would ask to be referred to an accredited CF Facility. Mutations can be tricky. Some people...
  9. R

    Tobi Prescription Roadblock, Please Help!

    I hear you. Our primary pharmacist is a relative and for awhile he was a specialty pharmacist, but the hoops they made him jump thru were just too much, so we had to switch the pulmozyme and tobi to a specialty pharmacy. He still provides all other medications. Meanwhile, I'd doublecheck...
  10. R

    Tobi Prescription Roadblock, Please Help!

    Has your GP run any CF cultures? The biggy would be if you're culturing pseudo, or enterbactor choclae or any other bug that is sensitive to tobi. I'd think that would be an easy way to prove you need it. DS has been on tobi forever and hasn't cultured it for awhile, but our insurance...
  11. R

    Mass of mucus in chest

    When DS seems to have issues, we increase chest physiotherapy (cpt). We normally do 3 breathing and vest/cpt treatments a day, but will increase to 4-5 if need be. We also will focus manual cpt/percussions on the areas that area affected. His breathing treatments also include dnase/pulmozyme...
  12. R

    Precision Medical Easy Comp 50 psi Compressor Loud

    I did see some brass or nickel nipple and nut adapters somewhere online, along with the plastic green ones. The green Christmas tree ones I think are just too big and the hoses pop off. As for the pari tubing, I think I got them from Justnebulizers --- they were about $10, but well worth the...
  13. R

    Precision Medical Easy Comp 50 psi Compressor Loud

    It doesn't get overly hot. It does get warm, but supposedly if it overheats, it'll shut off. We run it 30-45 minutes at a time. I did have issues with the Mobilaire and tubes popping off, so I ordered some heavier duty ones for the Pari Vios Pro, which has a higher PSI and that seemed to do...
  14. R

    Precision Medical Easy Comp 50 psi Compressor Loud

    Pulled the trigger on a 50 psi compressor after our Invacare mobilaire started having issues. The new one is so flipping loud. Am going to contact the company, but wondered if this is the nature of the compressor and something we just need to live with. The other issue is I can't keep it on...
  15. R

    symdeco

    Ds mostly has digestive and sinus issues, so his purge involved that. Have you tried sinus rinses? He does them when he gets colds.
  16. R

    symdeco

    Were you on Orkambi before? Probably just "the purge", your body adjusting and trying to get all that junk up. Have you tried increasing vest/cpt and nebulizer treatments, drinking lots of water...?
  17. R

    Mobilaire 50 PSI compressor

    Ordered up a new one after the mobilaire took a dive off the end table. Came with a green "nipple" adapter for tubing, will probably cannibalize the brass one from the old machine. Ds seems to think it's louder. Manual does warn against saline usage and warranty issues. But seems like a good...
  18. R

    Mobilaire 50 PSI compressor

    Has anyone found a good replacement for the 50 psi compressor? Looked at the precision medical one online, but wasn't sure if it was compatible
  19. R

    Diagnosed during pregnancy

    While it didn't show up on the ultrasound, my son was born with a bowel obstruction caused by meconium ileus. In his case he required surgery to clear the blockage and spent a few weeks in the hospital while he recovered. He would've gone home after a few days, but developed an infection and...
  20. R

    DIOS - any tips on how to get your bowels moving after a blockage?

    DS was born with a bowel obstruction due to meconium ileus and underwent surgery when he was a day old. And he'd experience issues, which we resolved by giving him milk of magnesia to clean him out from time to time. When he was 6 he experienced a blockage, for which he did end up having...
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