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Type: Posts; User: kenna2

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  1. Replies
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    So the amount you are getting up is probably from...

    So the amount you are getting up is probably from both the infection and from the Trikafta. I've been seeing lately that people who are taking it are bring up a ridiculous amount of old junk. Someone...
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    Insurance covered it. I had already hit my out of...

    Insurance covered it. I had already hit my out of pocket. I got it when it first became available.
  3. The article I read said pharmacies will begin...

    The article I read said pharmacies will begin having it 2 weeks from when the FDA approved it.
  4. I'm a DDF508 as well and while I got some benefit...

    I'm a DDF508 as well and while I got some benefit from Orkambi, I still didn't feel better a whole lot better on it. I was on Orkambi for about two and a half years. I was switched over to Symdeko...
  5. Incorrect. It's better than Orkambi. My doctors...

    Incorrect. It's better than Orkambi. My doctors and transplant team kinda explained like this. The gates that let the sodium in in Cfers are hunched over and broken down. A med like Orkambi, make...
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    If genetic screening came back positive, then he...

    If genetic screening came back positive, then he has CF. Sweat Tests are a bit of a challenge as some CF patients have had negative results on sweat tests. When it comes to enzymes, they will help...
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    I have taken Orkambi and was switched over to...

    I have taken Orkambi and was switched over to Symdeko once it became available. I was switched over because of the better results that Symdeko had, but did fine on Orkambi. I went through two purge...
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    Elexcaftor is the third drug in the triple combo

    Elexcaftor is the third drug in the triple combo
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    Some people love the Vest and it works well for...

    Some people love the Vest and it works well for them. For others , like me, I don't feel it does enough or gets to the areas I feel are clogged. I would recommend getting a Vibralung. It's quicker, a...
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    I'm so excited!! I hope everyone is able to get...

    I'm so excited!! I hope everyone is able to get this and improve on it!!
  11. Thread: Constipation

    by kenna2
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    3,026

    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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    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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    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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    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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    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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    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
  18. Thread: Please help!

    by kenna2
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    1,796

    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
  20. Thread: Advice

    by kenna2
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    3,218

    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...
  22. Thread: Disability

    by kenna2
    Replies
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    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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