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Type: Posts; User: kenna2

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  1. Replies
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    It will be a blood test for a full genetic test....

    It will be a blood test for a full genetic test. With having cystic fibrosis you unfortunately become a human "pincushion". Give him lots of love and something to look forward to afterwards! I hope...
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    Liver Transplant before Lung Transplant?

    Has anyone had a liver transplant way before they needed a lung transplant? I'm curious as to how this works as I know liver and lungs need to come from same donor
  3. Thread: Please help!

    by kenna2
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    1,436

    I used to do 3 weeks on IV Tobi inpatient and...

    I used to do 3 weeks on IV Tobi inpatient and sometimes up to 4 weeks on home IVs. Can no longer use it due to hearing loss.
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    Cleveland Clinic...It's always been the top or...

    Cleveland Clinic...It's always been the top or second top hospital in the world
  5. Thread: Advice

    by kenna2
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    2,688

    I really don't know what to tell you. I think...

    I really don't know what to tell you. I think it's possible you're a carrier of CF and carriers can have symptoms of CF. CF requires either two heterozygous or homozygous mutations. There have been...
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    Tips for Air Travel with IV meds

    I will be flying out of town while on IV meds and I've never flown with them before. Wondering what tips you guys have to getting though security and what not. I do have TSA Pre-Check so that might...
  7. Thread: Disability

    by kenna2
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    852

    I don't remember who I went though to file for...

    I don't remember who I went though to file for disability, however I remember my social worker saying it's common to get denied on the first attempt and sometimes the second. They usually want more...
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    Right Heart Catheterization

    So I have to get all the invasive testing out of the way for my transplant stuff. While really I'm still not sick enough to be listed, my transplant doctor wants this information for my chart for a...
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    Get a baby bottle sterilizer.

    Get a baby bottle sterilizer.
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    Talk to either your doctor or social worker at...

    Talk to either your doctor or social worker at the clinic and let them know you want to get her on it when it becomes available. Vertex usually sends forms to CF clinic to have us fill out to get the...
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    The triple combo med isn't out to patients yet....

    The triple combo med isn't out to patients yet. They are still deciding which triple combo med to put out. My doctor told me they should be out for patients towards the end of 2019.
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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?
  21. Thread: Traveling

    by kenna2
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    3,083

    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.
  24. Thread: symdeco

    by kenna2
    Replies
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    2,228

    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...
  25. 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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