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  1. Replies
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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....
  3. Thread: opening up

    by kenna2
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    620

    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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    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...
  5. 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.
  7. lol...how cool! I hope he's doing well!

    lol...how cool! I hope he's doing well!
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    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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    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...
  10. 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...
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    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.
  13. Thread: Anti-IgE Test

    by kenna2
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    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,...
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    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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    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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    I sometimes get it in my shoulder from doing IV...

    I sometimes get it in my shoulder from doing IV meds and yes it's worth it. Strength training/ physical therapy will help. The important thing is to keep up with it.
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    It depends on the person. The insulin you do when...

    It depends on the person. The insulin you do when you eat (short acting) is for the carbs you eat to cover only. You should have a sliding scale for additional insulin to do if your sugar goes above...
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    Your numbers are not that high at all. The thing...

    Your numbers are not that high at all. The thing to keep in mind is that your CF is also playing a huge factor in your high readings. Your body is fighting an infection and blood sugar numbers...
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    The Vibralung is still a newer form of airway...

    The Vibralung is still a newer form of airway clearance(maybe 4 years old) that uses a speaker that emits sound waves. You hold it in your mouth like an aerosol and that's it. It has 3 settings a...
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    I've never felt nauseous while doing it but that...

    I've never felt nauseous while doing it but that was awhile ago. I now use the Vibralung which I feel is a lot more effective than the Vest and aerobika for me. The one thing I will say is the...
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    Hey guys! Just wanted to update..I made the...

    Hey guys! Just wanted to update..I made the switch from Orkambi to Symdeko and I just completed my 6th day. I have to say I noticed I am getting up a lot more junk in a shorter period of time than I...
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    Yes it can. I culture pseudomonas and it has...

    Yes it can. I culture pseudomonas and it has caused me to have joint pain, body pain, fever, and swelling when an infection kicks up. It's called Reactive Arthritis. It's gotten worse as I've gotten...
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    Sweat test before starting Symdeko?

    I just got approval though my insurance for Symdeko and will be switching over from Orkambi. Did anyone who has started on Symdeko have a sweat test done before they started on it? My clinic keeps...
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