Recent content by Krazy4Katie

  1. K

    Is there anything against Abscessus when Tygacil, Amikacin etc have failed?

    Check out this one from NIH I'm so sorry to hear this. My daughter is 18 has high resistant abscessus and pseudomonas and recently this week been told there's nothing else that will work. She will be going home on hospice. We've tried a lot and between her allergies and drug resistance we are...
  2. K

    VibraLung Review

    Vibralung VERY EFFECTIVE This thing is amazing. My daughter said that after using this, she can bring up more mucus than from anything else (the vest, chest PT, and acapella). She has end stage CF with FEV1 hovering 30%. Our insurance company thank goodness covered it. Hope that every CF...
  3. K

    Bleeding - Rifampin???

    We were told her urine/stools would turn a bright orange or red. I'd still get it checked out just in case. Good luck
  4. K

    Kalydeco with an FEV1 of ~27% (homozygous delta-F508)

    My daughter just had her checkup, currently bounces from 29 to 33% fev1. She asked her doctor if she can start that when it's available and he said yes, that it would take a lot of authorizations on their part, but that it would benefit her. I specifically asked him, if the FEV1 had to be a...
  5. K

    Anyone else have trouble with RT's while in hospital

    Very sorry to hear. Hope you're feeling better soon. Occasionally we get a "new" RT, but then I go in mama bear mode and straighten then out. I would definitely let your doctor/team know. Only problems we've had is that some of our RT's are wearing strong perfume/cologne, which triggers...
  6. K

    Transplant or Not to Transplant?

    My daughter is 18, and been told its time to meet the transplant team. Prior to 2/15/15; her FEV1 were stable at 43%, on continous IV Imipenum for M Abscessus, and a daily cocktail of antibiotics for her NTM (m abscessus), room air during the day, and 1 liter of 02 at night. She caught the flu...
  7. K

    aerosolized amikacin

    I'm nervous as well for my daughter who they decided to put her on the neb amikacin after she has hearing loss from the IV amikacin. She tried Cayston but hasn't helped her at all. She's already wearing hearing aids, but we are at the point in life where we have to choose to breath or hear.
  8. K

    Tips for traveling by train to Florida

    My daughter graduates next month, and plans on visiting close friends by herself by train headed to Florida. Just curious to find any tips you may have as far as she's traveling with CF and needs her oxygen machine at night.
  9. K

    friend's child had a mycobacteria absess

    I'm a parent to a 17yr old girl who has mycobacterium abscessus. Normal CF protocol at Johns Hopkins is that everyone with CF wear a mask to clinic to avoid spreading the germs, they are very strict about disinfecting the rooms before we go in. Im very careful with her to be protective to...
  10. K

    The type of bacteria growing in CF lungs correlates with how viscous the mucus is

    Very interesting information, however, please do not forget about Atypical Mycobacterium Abscessus (non-contagious TB), which is impossile to get rid of. My daughter suffers with that and chronic PA, we are being referrred to Dr. Olivier at the NIH for treament for it, hoping to get access to...
  11. K

    Feeding Tube Concern

    My daughter is now 17 and it does help her (when she uses it). In the beginning when she was younger, she was able to gain some good weight, but as she got older & started to rebel, along with trouble with constant nausea in the morning (constant changing meds around to help her feel better)...
  12. K

    Just a little rant about health care workers

    I can't stand when the "traveling" respiratory therapists who are only there as a traveling team to help with the overload of the flu/sick season, that they come in wearing strong cologne or perfume (which if you have CF, asthma or any type of breathing problem) this sets off a coughing spell or...
  13. K

    where is the best and top-rated CF center?

    We live in Baltimore and are thankful we are close to Johns Hopkins. They are wonderful, as I'm sure all the other CF centers nationwide are too. Good luck with your daughter
  14. K

    Atypical Mycobacterium Abscessus Advice

    Thanks for responding. I'm sorry to hear about your daughter's battle, it sounds very similar to mine. The first myco culture's been negative (meaning not an active infection), but still always comes back positive after the longer wait. Our CF doc and our inf disease docs are always in...
  15. K

    Atypical Mycobacterium Abscessus Advice

    My daughter is 16 with atypical mycobacterium abscessus. We recently have been told by our doctors, they no longer are not sure how to treat due to her multiple drug allergies, drug resistance, and the hearing loss she's acquired from multiples antibiotics. They haven't given up, but yet just...