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  1. Thread: CRMS & Mucus

    by kenna2
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    1
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    126

    Not sure if you are doing this or know about...

    Not sure if you are doing this or know about this, but my ENT who sees a lot of CF patients, has us adding a drop of baby shampoo to our sinus rinses. He said it helps keep things clean and clears...
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    3,594

    I know a lot of CFers have jobs where they can...

    I know a lot of CFers have jobs where they can work from home or remotely. I don't know specifics, but I'm just sharing the knowledge I have.
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    3,484

    They have a 5% and 3% hypertonic saline...I use...

    They have a 5% and 3% hypertonic saline...I use the 5% because the 7% is too strong for me. See if maybe she can try the others..it helps!
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    It is possible to have CF and not have any tell...

    It is possible to have CF and not have any tell tale signs for years. I was diagnosed at 7 and some people on this site have been diagnosed as adults. I know this must be a huge adjustment and shock...
  5. Thread: Drop in Fev1

    by kenna2
    Replies
    3
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    665

    I've had this happen many times. It's frustrating...

    I've had this happen many times. It's frustrating and completely normal. Sometimes I will feel amazing and my pfts will be low or I will feel like crap and my pfts are amazing. You're not the only...
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    Here's the trailer...

    Here's the trailer https://www.fivefeetapartfilm.com/
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    Five Feet Apart CF Movie!!

    For those of you who don't know March 22, 2019 in theaters EVERYWHERE there is a movie called Five Feet Apart that is about a friendship between two CF patients who meet while they're both being...
  8. I've had acupuncture since I can't take regular...

    I've had acupuncture since I can't take regular pain medications. It's amazing and I love it. I've used it when I used to suffer from really bad headaches and from shoulder injury during physical...
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    Welcome to the forum, sorry about all you went...

    Welcome to the forum, sorry about all you went though to get your diagnosis. While most CFers are diagnosed at birth, some are diagnosed later in life too. I was diagnosed at 7 and I know a couple...
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    I don't paint, however I think you should get her...

    I don't paint, however I think you should get her the paints. If it's therapeutic to her then I think it's worth it. With CF there are some things that may irritate one persons lungs and not another....
  11. Thread: opening up

    by kenna2
    Replies
    3
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    1,024

    I think almost every teenager with CF, as long as...

    I think almost every teenager with CF, as long as they are healthy and their CF doesn't get in the way of living a normal life, don't bring it up or take a real interest in it. I know I didn't. I...
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    1,084

    I know carriers can have symptoms of CF, but then...

    I know carriers can have symptoms of CF, but then again anyone can have CF symptoms. What are your symptoms that you're experiencing? I only ask because when people get the news that they're a...
  13. I would get checked by a GI doctor for GERD. It...

    I would get checked by a GI doctor for GERD. It sounds a lot like what I went through before I was diagnosed with it. I had to have a Nissen Surgery to correct it and haven't had any real problems...
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    I get this too. My dad keeps our house so cold...

    I get this too. My dad keeps our house so cold all year round and going outside or coming back in results in a major post nasal drip episode and coughing fit. Not sure how to fix this.
  15. lol...how cool! I hope he's doing well!

    lol...how cool! I hope he's doing well!
  16. Replies
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    1,816

    Yes I would have him retested. I was diagnosed at...

    Yes I would have him retested. I was diagnosed at 7 but never showed any real issues until my teenage years.
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    980

    Make your hospital bed more comfortable!!

    I just wanted to share this tip because not many people think to do this but it's greatly improved my hospital stays. I always bring a twin sized egg crate foam mattress with me to the hospital, with...
  18. Hey! So to answer your questions 1)...

    Hey! So to answer your questions
    1) Physiotherapy....what does she use to do airway clearance? Vest? Aerobika? or are you manually doing it? That might help us give you a better answer. But keeping...
  19. Replies
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    1,092

    I was diagnosed at 7 and I was never able to...

    I was diagnosed at 7 and I was never able to cough anything up for years until I got into my 20s. It really all depends on the person, but for me, there are days when I don't cough at all and some I...
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    I had headaches when I first started Symdeko as...

    I had headaches when I first started Symdeko as well. They went away after about 3 weeks for me. Still on Symdeko and doing well. Hopefully this is just part of the adjustment too.
  21. Thread: Anti-IgE Test

    by kenna2
    Replies
    5
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    1,607

    I've had this tested a couple of times. From my...

    I've had this tested a couple of times. From my understanding, basically this is a test to see how well your body's immune system works and is able to fight off infection. They look at your white...
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    I remember that study as well and a lot of people...

    I remember that study as well and a lot of people do continue to argue which is the correct order. I've tried both ways and personally I get more benefit out of doing pulmo after my airway clearance....
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    The way she's doing them now is the correct...

    The way she's doing them now is the correct order..
    The order is supposed to be:
    Bronchodilator (albuterol or other)
    Hypertonic saline
    Airway Clearance
    Pulmozyme
    Antibiotic (Tobi, Colistin,...
  24. Replies
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    2,396

    I had this problem when I was younger and my...

    I had this problem when I was younger and my doctor changed the type of enzyme I was on. He thought it was more mental than anything and I don't remember having issues after. But I wonder if he's...
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    1,633

    What do you say you do?

    When meeting new people, I always fear the question of "what do you do for a living"? Since i'm not stable enough to work and don't want to get into detail about my CF, I always find it hard to...
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