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  1. J

    Received original diagnosis paperwork from 1974

    I hope you get answers Those sweat test results are very suspicious and could mean you really do have CF. I have 3 kids with CF that got diagnosed later in life (only because the 14 yr old got very sick and ultimately diagnosed). CF has a spectrum. My 24 year old has fantastic lung functions...
  2. J

    Anyone get a copy of their PFTs at clinic visits?

    Keeping track of the pft results I always get a copy from the technician. I am legally entitled to the information and the clinic obliges me. (I live in Israel) I think you mentioned a real solution, which is to just take a picture! I have charted my son's PFT almost since the day he was...
  3. J

    40 year old misdiagnoised as a baby

    CF gene The CF gene was discovered in 1989. Front page news http://www.sciencemag.org/content/245/4922.toc
  4. J

    Dr. Needed for newly diagnosed patient.

    It is worth going further for top care Personally, I like convenience; but I met a mom who just transferred to my clinic and the difference it has made for her baby has been dramatic. He was constantly sick with continual hospitalizations. Now, at my clinic, he is a healthy, thriving toddler...
  5. J

    Siblings - similar severity?

    modifier genes Noun 1. modifier gene - a gene that modifies the effect produced by another gene http://www.thefreedictionary.com/modifier+gene https://www.google.co.il/search?q=Modifier+Genes&oq=Modifier+Genes&aqs=chrome..69i57&
  6. J

    Siblings - similar severity?

    I understand your curiosity. While not too likely, maybe one of your parents actually had a (very) mild case of CF so the sibling got the more severe mutation, while you got a "mild" mutation? The truth is they are researching this because there are such variations between siblings. They are...
  7. J

    2 little CF warriors

    I have 3 kids with CF. They are older, and they were older when we got the diagnosis, but it doesn't sound healthy to be crazy about keeping them apart. Definitely, consult with your CF team and other parents.
  8. J

    Running

    My husband has been using an exercise bike & he likes to play this https://www.youtube.com/watch?v=eG8Kauwk44I&list=TLKQgTOeYxhMk1n7-RT0iZ9WY73HgdSsXl. For running I found this https://www.youtube.com/watch?v=yaGTOF9KVTk or this https://www.youtube.com/watch?v=s6JCmgV4orc
  9. J

    Worth bringing up?

    I don't really understand why the doctor is "hesitant". It is such a simple test & would put your mind at ease. If it is positive, OK, and if not, also good! It is really a win win situation. I would be a bit more pushy about it. That uncertainty is awful. Good luck! I am glad to hear you have...
  10. J

    Worth bringing up?

    Wow! I am so impressed with your mothering! You are really on the ball. I hope your baby doesn't have CF, but going to a pulmonologist is a great first step to ruling it out! The standard screening test is far from 100% and, if he does end up being positive for CF, you will see a HUGE...
  11. J

    breathing machine

    Fantastic TED talk https://www.youtube.com/watch?v=T2EmuyHoMAI
  12. J

    My blog and a question for everyone

    Give & Take I personally feel that living with another human being requires some give and take. This is a real health concern - maybe she can try some other outlet? Like volunteer for Big Sisters or for the SPCA, etc? Good luck.
  13. J

    New- My Fiance has CF, I do not Carry the Gene

    Please make sure Be careful when having children. I saw this article from Australia, about a CF man and his non-Cf wife having a child with CF because of inadequate genetic testing...
  14. J

    Need perspective

    The only thing to fear, is fear itself I can understand your anxiety. My daughter was diagnosed at 15 and then we went through the painful process of screening my entire family (10 kids). The later diagnosis makes the statistics better but it doesn't help that inner fear of the unknown.(VEST)...
  15. J

    Has anyone been diagnosed post 30 years old??

    I have a 22 year old son with CF and the only reason he got diagnosed is because his younger sister had a competent doctor who sent her for screening. Our family doctor was shocked we were doing a sweat test for the 15 year old,who never had any previous history of lung issues. ("Why are you...
  16. J

    Just discover that my wife and I are carriers.

    Hi. My husband and I are both carriers, only we didn't know until 2 years ago, when my then 15 year old daughter got diagnosed. We were spared all this agonizing because there was no genetic screening for CF when we got married and had most of our family. You really have a 75% chance that this...
  17. J

    Does Kalydeco Eliminate Pseudemonas?

    re: an encyclopedia for an overview
  18. J

    Salin Plus

    Has anyone heard of this or know anything about it? Salin Plus http://www.youtube.com/watch?v=ly-i1sZskX8 Thanks! :D
  19. J

    5 year old Daughter MIGHT have CF

    I have 3 kids diagnosed at ages 8, 15, 21. CF has a spectrum. As people here have already said, make sure you see a real CF doctor, who is properly trained in the field. Personally, my daughter was so sick when she was diagnosed at 15, I was sure she had lung cancer. I was relieved she had a...
  20. J

    Vest

    This company is specifically for international customers and the price is much more reasonable. They sell *refurbished* vest machines. http://www.affordablemedequipment.com/ Another idea is getting a pediatric percussor...
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