Recent content by rubyroselee

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    Adults with CF what are your jobs?

    I went to nursing school, but after I got licensed I didn't want to expose myself to all the germs. So I got my MBA and weaseled my way into healthcare IT. I think IT is a great career for CF. I am able to work from home (or the hospital) if I need to, and it's not physically demanding. Some...
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    Capsule endoscopy

    Has anyone ever had a capsule endoscopy done? I have one scheduled for Friday and just wanted to know your experience with it. Thanks.
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    Healthy diet vs CF needs

    I struggle with this as well. I crave salt constantly, which usually equates to junk food. What I found is that I try not to worry too much about what I'm eating because it stresses me out! But I do try to get in some fruits and veges each day, lots of protein, and eat whatever my body is...
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    Drop in Fev1

    I have not cultured that before, but I know a lot of people have it. Hoping you're able to get rid of it and get your numbers back up :)
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    Phase 2 study for new enzymes to begin!

    Great news!
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    DIOS - any tips on how to get your bowels moving after a blockage?

    Does she currently do any type of maintenance to keep things moving (i.e. Miralax)? I also have a lot of issues with DIOS. I just got out of the hospital for an obstruction a couple weeks ago, and it was the worst one yet. I regularly take Miralax, and when I feel things starting to get backed...
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    Possible CF for me and my son?

    Probably best to get a sweat test and/or genetic test done if you're concerned about either of you having CF. I was very concerned that my biological son might have CF after he was born, because he was always sick as a child. So I had him Ambry tested just to make sure - and luckily he only had...
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    Phase 3 results for VX-659 triple combo

    So exciting!!!
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    Drop in Fev1

    I typically run around 80%. One time I was 55%, but I really didn't feel bad. Turns out I was just exhausted from having two little kids. I found that when I'm tired or stressed, my numbers go down even though I'm feeling pretty good. If you're not having any other symptoms, I wouldn't worry too...
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    Five Feet Apart CF Movie!!

    Can't wait to see it!
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    Animated Story: Growing up with CF and 2017 Transplant Part 1

    You're very talented! I enjoyed it :)
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    Reduce Treatments with Symdeko?

    I have been on Symdeko since March, but have not reduced any of my treatments. However, I did notice that I do not have to really work very hard to cough stuff up during my vest/Aerobika any longer. Most mornings and evenings I'm pretty clear, so I end up putting the vest on, but there is no...
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    Carriers with symptoms or CF dx?

    I am very interested in this topic, as I have heard of plenty of people who are carriers with CF-related symptoms. I have heard of many individuals who have either had digestive, lung, or sinus issues as a carrier, but unfortunately there is no solid evidence or studies. I really wish the...
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    Dry Cough/Symdeko

    Hi - I have been on Symdeko since March. I would say that my cough definitely feels different. I am experiencing more of a dry cough now compared to my pre-Symdeko junky cough. My lungs feel different too - a little more irritated and twitchy perhaps? I'm not really sure, as I'm still trying to...
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    Low Ferritin and Iron Levels- is this common with CF?

    I started having chronic low iron a few years ago. I am on a maintenance dose of one 325mg pill every other day. We have come to the conclusion that it's from menses or absorption issues. Unsure if it's common with CF or not.