Search:

Type: Posts; User: Beccamom

Page 1 of 20 1 2 3 4

Search: Search took 0.02 seconds.

  1. Replies
    51
    Views
    35,491

    I had CF clinic yesterday and my doctor has a...

    I had CF clinic yesterday and my doctor has a patient who is 85 with a positive sweat test of 65. He has had lung and sinus involvement his entire life and recently became PI.
  2. I am glad you are home and she is doing better. ...

    I am glad you are home and she is doing better. Was her culture tested for sensitivities? Sometimes IVs are the only option if a culture is resistent to the antibiotics available in oral form. ...
  3. Replies
    71
    Views
    13,200

    I have CF with two mutataions. My daughter CF...

    I have CF with two mutataions. My daughter CF carrier has worse lungs then me. My daughter has been in limbo for a diagnosis for all 16 of her years. How are your child's lung function test...
  4. Replies
    14
    Views
    2,908

    I am am so glad you switched clinics. As far as...

    I am am so glad you switched clinics. As far as the culture and the symptoms coming up later that is exactly why the cultures are needed. My lungs are colonized with PA bacteria, but it does not...
  5. Replies
    29
    Views
    5,993

    PCD testing

    I have two mutations and an Intermediate sweat test and I am diagnosed and treated for CF. Has your child been tested for PCD, Primary Ciliary Dyskinesia?
  6. Replies
    28
    Views
    5,887

    I have CF and I have been married to my husband...

    I have CF and I have been married to my husband for nearly 17 years. We have a 15 year old and a 13 year old daughters. They are CF carriers, but one has all the CF symptoms and my severe mutation...
  7. Replies
    12
    Views
    3,452

    are you seen at a Cff accredited CF center? In...

    are you seen at a Cff accredited CF center? In the US OGTT two hour is supposed to be done yearly. I have a normal A1C and test positive for CFRD on the 2 hour OGTT this year. 2 years ago I was...
  8. Replies
    3
    Views
    369

    I live in New Jersey near exit 5 of the turnpike...

    I live in New Jersey near exit 5 of the turnpike and my daughter goes to CHOP and I go to Unniversity of Pennsylvania. Smoke CHOP doctors are good and some are aweful. I love the whole Penn team for...
  9. Replies
    8
    Views
    2,146

    Was the sweat test done at an accredited cf...

    Was the sweat test done at an accredited cf center on www.cff.org. If not it is likely the sweat test is not accurate. 2 CF causing mutations means CF.
  10. Replies
    25
    Views
    2,773

    My 15 year old loves her vest but goes through...

    My 15 year old loves her vest but goes through sizes every couple months as her chest is growing. I began to take the vest to Pulmonary appointments to help get the straps adjusted, but she is now a...
  11. My daughter has has both fecal elastase and...

    My daughter has has both fecal elastase and pancreatic stimulation. My understanding is that if done correctly pancreatic stim is more accurate, but it is rarely done and so often not done...
  12. Replies
    7
    Views
    2,216

    This happens to my daughter and I.

    This happens to my daughter and I.
  13. Anyone approved for Kalydeco for a 5T variant

    I have a stop codon on one gene and a 5T variant on the other gene. The second gene has polymorphisms but no known disease causing mutation. My doctor is working on the insurance approval now. I...
  14. Trio verses erapid are they interchangeable

    I have a trio for Tobi but I am told it is rented and can only be used for Tobi. Anyone have a Trio and Erapid know if the medication cups can both be used with the Trio base and Trio connector...
  15. Trio verses erapid are they interchangeable

    I have a trio for Tobi but I am told it is rented and can only be used for Tobi. Anyone have a Trio and Erapid know if the medication cups can both be used with the Trio base and Trio connector...
  16. Thread: eRapid?

    by Beccamom
    Replies
    7
    Views
    2,228

    I have a trio which is a eflow just for a certain...

    I have a trio which is a eflow just for a certain formulation of Tobi, so maybe ask for a prescription. I get the trio free with the script for tobi. I saw an add today tha pulmozyme is now FDA...
  17. Replies
    54
    Views
    4,930

    I find all of this concerning. I only have...

    I find all of this concerning. I only have health insurance because I get it through my husband's job. I have been discriminated against because of my CF. I currently work for a very small company...
  18. 10 is too young as neither the insurance company...

    10 is too young as neither the insurance company nor the pharmacy will talk to a 10 year Old. I understand your concern and see my other response with more details. At my adult CF clinic there are...
  19. When my daughter turned 14 we were given a...

    When my daughter turned 14 we were given a checklist of things to transition to her over the next 4 years, so by age 18. The first big item was she goes into the PFTs herself. By 14 she was doing...
  20. Thread: DNA results

    by Beccamom
    Replies
    4
    Views
    2,302

    My 15 year old has been in limbo for a diagnosis...

    My 15 year old has been in limbo for a diagnosis her entire life. She has Alpha 1 antitripsin deficiency but I am told it does not affect the lungs until adulthood. She is genetically a CF carrier....
  21. Replies
    33
    Views
    6,506

    I am diagnosed with CF with a stop codon 7T M470V...

    I am diagnosed with CF with a stop codon 7T M470V and the other gene 5T M470V. I have a healthy child with one M470V7T and a child treated like CF but not diagnosed with my stop codon 7T and 2 M470V...
  22. Replies
    10
    Views
    7,752

    Advice on disinfecting while traveling in Europe?...

    Advice on disinfecting while traveling in Europe? Instead of distiller water can a person boil water for a certain length of time?
  23. Replies
    12
    Views
    2,307

    I agree with eradicate the PA and I also share...

    I agree with eradicate the PA and I also share the concern your child is not being treated the same as she would with a CF diagnosis. I was diagnosed with CF as an adult and although I always had CF...
  24. Replies
    1
    Views
    740

    Maybe you moved a mucus plug out and it scrapped...

    Maybe you moved a mucus plug out and it scrapped your lungs up on the way out.
  25. Replies
    2
    Views
    781

    https://www.fphcare.com/products/airvo/. I read...

    https://www.fphcare.com/products/airvo/. I read this is in clinical trial for CF now. The Airvo can be used with or without oxygen and keeps the airways hydrated.
Results 1 to 25 of 500
Page 1 of 20 1 2 3 4