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Type: Posts; User: kenna2

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    So I think they might keep these older ones...

    So I think they might keep these older ones around after the triple's come out. The reason is my doctor has told me that some patients can't handle the full dose of the ones that are out now and some...
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    The bleeding happens because of increased heart...

    The bleeding happens because of increased heart rate, air doesn't make a difference. I have never been able to work out outside in Ohio's cold winter weather...lol...you're amazing for that!!
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    Having my first port I was asked where I wanted...

    Having my first port I was asked where I wanted it. Since I have a fear of being stabbed in the chest, I opted for the arm. They do them in arms, legs, chest, sides. You just have to know to ask....
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    You need a port. It's so much nicer and easier...

    You need a port. It's so much nicer and easier come IV time. Basically a port is an implanted device that feeds into a major vein that goes into your heart. It's about the size of a quarter and has a...
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    Need ideas for exercise

    So I'm having issues with coughing up blood anytime I get my heart rate up. It's annoying and some of the most basic exercises set it off. I can't lay on my back at all and doing yoga even makes it...
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    Unvaccinated from what? That might help us to...

    Unvaccinated from what? That might help us to know that
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    Anything in IT/ computer related...I didn't...

    Anything in IT/ computer related...I didn't listen when my dad told me this was the route to go...wish I would have.
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    I agree with Jricci...some insurances won't cover...

    I agree with Jricci...some insurances won't cover certain meds if it's not written from a specialist doctor who sees you for what you take. It kinda makes sense, you're not going to get coverage for...
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    That's really interesting. What's it called and...

    That's really interesting. What's it called and have you noticed a difference since you've been on it?
  10. Thread: Traveling

    by kenna2
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    2,899

    It's absolutely fine. I live in Ohio and have...

    It's absolutely fine. I live in Ohio and have been to Hawaii 4 times. That's a long trip but so worth it. The important thing is to prepare and pack for the worst. Find out where the closest CF...
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    Anyone taking Avycaz?

    Has anyone started taking Avycaz during their tune-ups? I might be switched over from Colistin to this. Wondering what your experience with it was. How did it make you feel... ect.
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    Yeah, husband comes first. She needs to move out....

    Yeah, husband comes first. She needs to move out. Until then while she's sick, she needs to wear masks and what not to protect your husband.
  13. Thread: symdeco

    by kenna2
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    1,699

    I started out on Orkambi first then switched to...

    I started out on Orkambi first then switched to Symdeko. If you're just started your first CF corrector med, you're going to go through a purging period. It's tough, but worth it. Like Ratatosk said...
  14. Thread: CRMS & Mucus

    by kenna2
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    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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    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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    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...
  18. Thread: Drop in Fev1

    by kenna2
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    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...
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    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....
  24. Thread: opening up

    by kenna2
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    1,431

    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...
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