Recent content by JustaCFmom

  1. J

    Hi, I would love to get that link to the webinar about kalydeco and pregnancy. My daughter is...

    Hi, I would love to get that link to the webinar about kalydeco and pregnancy. My daughter is expecting now and we would appreciate any information that's available. Thanks so much for your time and help! ♥️
  2. J

    Two positive sweat tests

    re: Normal Anxiety Hi Mom03, First, welcome! This site is full of helpful information and people. You are not alone! I have 3 kids with CF, now ages 14, 22 and 27. They were diagnosed 7 years ago and they have "atypical" CF. They don't have any digestive issues. In general, the statistics for...
  3. J

    Don't Do This, DON'T DO THIS, please.

    I am so sorry to hear about your travails. I hope you find it effective in the end!
  4. J

    Starting to think I may actually have CF....

    Wow They say truth is stranger than fiction. How amazing that you worked in a lab with CF bugs! I know how I felt when my kids got diagnosed and then I started to wonder about my own unusual symptoms. (I still wonder, but I have nothing like what you describe). I would see if I could get a...
  5. J

    Anyone with Mutation 3849+10kbC-T

    I know this post is from October, but I have a few kids with this mutation. I also carry it, but I don't have any noteworthy symptoms. I hope your husband is feeling better now that he is getting proper treatment. My daughter got diagnosed at 15, after coughing (out of the blue) like crazy for a...
  6. J

    Pseudomonas Aeruginosa Erradicated

    It is called the "Eradication Protocol" and is done routinely in Europe. The US was behind on this, but I think it is done more now. [Push Control F on your keyboard and search for "eradication" on this web site: ] My son had PA when he got diagnosed 4 years...
  7. J

    Help in testing

    Having reread the original post, my impression is that the "testing" was simply a sweat test. What you really need to insist on is GENETIC testing to look for CF Mutations. That is a simple blood test and Printer gave you a bit of an explanation. I so understand feeling information overload at...
  8. J

    Help in testing

    You situation sounds so challenging. If you get a full genetic testing done then that is enough to find if the child has 2 CF genes. It doesn't sound worth fighting with people if you can get around it. Good luck!
  9. J

    How do I delete a post?

    How do I delete something I posted? Thanks!
  10. J

    Have you improved your fev1????

    I found this very inspiring. I do believe that being active, etc is key to optimal lung functions. One percent up or down doesn't seem so significant to me (except when you are trying to get into some clinical trial!). I would look more at the trend...
  11. J

    CFTR nonsense w-1204, nonsense w-1143

    I don't know how to answer your question, really, but have you done a sweat test? My daughter was PERFECTLY fine until she turned 14 and then coughed non-stop until her diagnosis a year later. She was being treated for asthma until the second pulmonologist sent us for further tests. My kids...
  12. J

    How positive have the tests been?

    I didn't have to face this news with a newborn. How overwhelming! My daughter got diagnosed at 15 and only thanks to a shrewd pulmonologist. She just started coughing at 14 and coughed and coughed for a year until she got the CF diagnosis. Her cough cleared up once she got the proper meds and...
  13. J

    IV ball options? I am assuming that this is what you are talking about. My daughter has never been in hospital and she did this for of IV treatment a few months ago. It worked out really well for her. She had one for Amikacin and another for a different...
  14. J


    Vent away! :-) I am so sorry you are having such a hard time. You schedule sounds really intense. Would sleeping propped up help you at all? Do you have a way to check your oxygen saturation levels? Why are you struggling to breathe? Is there a way to talk to your doctor or get to clinic to...
  15. J

    MDR pseudomonas treatments?

    From what I understand, it would be quite rare for someone with CF to have a fever from these infections. (I suppose part of the problem) Honestly, I would push for some kind of IV antibiotic therapy. What do you have to lose??