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Thread: I'm new here (About Me)

  1. #1
    Junior Member
    Join Date
    Oct 2019
    Posts
    1

    Post I'm new here (About Me)

    Hi, my name is Sky. I have cystic fibrosis.
    I was a late diagnosis at the age of 6, but I have been doing well. My health has deteriorated recently, but I'm getting better.
    I used to live in Nova Scotia, and the doctors there just thought it was asthma when i was born (Keep in mind this was before the hospital I was born in did newborn screening for CF). A month before I turned 6, we moved across the country. I turned 6, and then we went to the hospital to finally see if we could get what was actually going on. The doctor looked at my fingers (Yes, my fingernails are curled, and I guess it's a sign of CF) and I was immediately sent down to the Vancouver Childrens hospital to get a sweattest done. The results came back positive (My brother did it too, but he was fine) and I spent 2 weeks in the hospital. Little did I know, this would become a very normal thing. After I was diagnosed, every year, I would stay 2 weeks in the hospital 2-4 times a year. I missed out on alot of school, so the next year I recieved an IEP (Individual Education Plan) And I have every year since then. Now, I only stay 2 weeks 1-2 times a year instead. I had to stay recently, and I need to get a bronco scope done soon. Let's just say I'm not very excited, because the first time backfired.. Badly.

    But thats all I really have to say!

    TLDR: I'm Sky, late diagnosis at the age of 6 (because the doctors where I used to live kinda sucked)

  2. #2
    Super Moderator
    Join Date
    Dec 2011
    Posts
    787
    Until recently I have been absent for two years plus. Normally I would be welcoming you to the site. I'm an old man with CF, diagnosed by sweat chloride at age 52 which was an anomaly in 2002. Late diagnosis is not so uncommon, with a member diagnosed in his late 70's.

    You found a good place to meet specialists versed in CF medicine. You are going to have continued health issues related to your extra sticky mucus. When do you need tests? Years ago a doctor gave me this answer: if the results of the bronchial scope, or such, are definitive, is there anything actionable that will be helpful for you? Sometimes knowing you have bronchiectasis, or maybe mucus plugs in the lungs are actionable and sometimes knowing is going to be all you gain. If the best I can do is know that I have bronchiectasis, maybe I would pass. Asking for the eventual outcome of anything invasive just means you have taken charge of your healthcare.

    Searching through this site you will probably find someone who has been there, on any issue related to CF.

    Good luck with your new discovery,

    LL
    67yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism established to be virulent. Classification review in 2017 remains CF diagnosis.

    Complete pancreatic atrophy, Bronchiectasis, MRSA, osteoporosis, small duct disease, charming personality.

  3. #3
    Senior Member
    Join Date
    Oct 2007
    Posts
    233
    Welcome! You sound similar to my son since he was not diagnosed until he was 5 years old, and was misdiagnosed with asthma. We moved when he was 2yo and 4yo so a relationship with the same ped delayed his diagnosis. Thankfully he was able to start all the meds needed when he was 5. I hope your next bronch is better!
    Mom to Luke, 17 years old DDF508

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