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Type: Posts; User: kenna2

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  1. Thread: Constipation

    by kenna2
    Replies
    6
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    2,256

    Miralax can help, and I know a lot of people do...

    Miralax can help, and I know a lot of people do about about 2 cap fulls twice a day. However, you have to be really careful with it. If the powder mixed isn't completely dissolved, that can create a...
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    3,672

    I have a Bed Wedge that I sleep on that helps...

    I have a Bed Wedge that I sleep on that helps when I cough. It's Brookstone brand (https://www.brookstone.com/pd/4-in-1-bed-wedge-pillow/633859p.html ) but I bought it at Bed Bath and Beyond. It...
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    513

    So just wanted to give you an FYI. I take Symdeko...

    So just wanted to give you an FYI. I take Symdeko and actigal too. I and some other CFers have had increased liver test being on it. We now have been instructed to only take the morning dose of...
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    1,402

    I do have liver disease too and am being...

    I do have liver disease too and am being evaluated for a liver transplant. I don't have issues with clotting so maybe that is a big determining factor. I'm always happy to help since my CF is very...
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    1,402

    So I am in a gray area when it comes to...

    So I am in a gray area when it comes to hemoptysis, I don't bleed enough for embolization yet, but still have frequent issues with it. I was prescribed by my cf doctor Tranexamic Acid to take when I...
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    1,703

    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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    1,288

    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
  8. Thread: Please help!

    by kenna2
    Replies
    1
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    1,697

    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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    3,261

    Cleveland Clinic...It's always been the top or...

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

    by kenna2
    Replies
    7
    Views
    3,067

    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...
  12. Thread: Disability

    by kenna2
    Replies
    1
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    995

    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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    1,068

    Get a baby bottle sterilizer.

    Get a baby bottle sterilizer.
  15. Replies
    10
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    2,920

    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...
  16. Replies
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    2,920

    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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    4,626

    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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    5,885

    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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    5,004

    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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    5,885

    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...
  22. Replies
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    4,966

    Unvaccinated from what? That might help us to...

    Unvaccinated from what? That might help us to know that
  23. Replies
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    12,039

    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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    4,167

    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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    3,856

    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?
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