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  1. Sweat tests can change, but genetic testing does...

    Sweat tests can change, but genetic testing does not. Genetic testing is the only 100% accurate way to determine if someone has CF. Some people have had low sweat tests results, but are still...
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    I was working part time with disability, but...

    I was working part time with disability, but can't any longer.I think it also depends on what state you're in too. In Ohio, you are allowed to make up to a certain amount each month (it's been a...
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    Not everyone's purge begins right away. When I...

    Not everyone's purge begins right away. When I took Symdeko and Orkambi, it was a couple of weeks before my purge period started.
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    With one copy of the DF508 you should be...

    With one copy of the DF508 you should be eligible. Here's a link to the med site for more information. https://www.trikafta.com/
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    Chaos...I'm so glad to hear that you're pfts are...

    Chaos...I'm so glad to hear that you're pfts are amazing and that you're willing to give Trikafta a shot. Can I ask what symptoms you were experiencing with the other two modulators? Just curious...
  6. So CF has to start somewhere. I am the first and...

    So CF has to start somewhere. I am the first and only one in my family who has it. My parents are the only carriers in their family (including extended). What this means is that he doesn't have CF,...
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    Before starting Orkambi I was at 46% and before...

    Before starting Orkambi I was at 46% and before Symdeko I was at 58%. I am now at 65% and still waiting for insurance to approval. I completely understand being terrified, but in my experience there...
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    For me it took me a couple of days for me to...

    For me it took me a couple of days for me to start feeling the changes, but it took me a couple months to look back and realize "wow I feel better". I noticed my body wanted to cough, but I didn't...
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    I've never had an issue with enzymes and reflux,...

    I've never had an issue with enzymes and reflux, however, acid reflux can become a much bigger issue when it comes to lung health. If gets out of hand and uncontrolled it can get worse and lead to...
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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.
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    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.
  13. 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...
  14. 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!!
  20. Thread: Constipation

    by kenna2
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    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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