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Type: Posts; User: rubyroselee

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    I went to nursing school, but after I got...

    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...
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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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    I struggle with this as well. I crave salt...

    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...
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    I have not cultured that before, but I know a lot...

    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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    Great news!

    Great news!
  6. Does she currently do any type of maintenance to...

    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...
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    Probably best to get a sweat test and/or genetic...

    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...
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    So exciting!!!

    So exciting!!!
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    I typically run around 80%. One time I was 55%,...

    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...
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    Can't wait to see it!

    Can't wait to see it!
  11. You're very talented! I enjoyed it :)

    You're very talented! I enjoyed it :)
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    I have been on Symdeko since March, but have not...

    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....
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    I am very interested in this topic, as I have...

    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...
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    Hi - I have been on Symdeko since March. I would...

    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...
  15. I started having chronic low iron a few years...

    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...
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    I definitely had headaches for a few weeks when...

    I definitely had headaches for a few weeks when starting both Orkambi and Symdeko. They eventually went away. Good luck!
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    Although I'm not on Kalydeco, I am on Orkambi and...

    Although I'm not on Kalydeco, I am on Orkambi and have had similar weight gain problems. I did not have a problem gaining weight before starting Orkambi. Once I started taking it, I gained about 15...
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    Thanks Amber!

    Thanks Amber!
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    Great news Ratatosk. That makes me so happy to...

    Great news Ratatosk. That makes me so happy to hear ❤️
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    Jaimers - Yes! I can't wait for the new ones to...

    Jaimers - Yes! I can't wait for the new ones to come out. Some of them look so promising. :)
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    Thanks jricci. It's nice to know that others have...

    Thanks jricci. It's nice to know that others have felt the same. I like that quote!
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    Thank you Golubicc.

    Thank you Golubicc.
  23. Gorgeous piece of work! Got my vote!

    Gorgeous piece of work! Got my vote!
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    Two Years Ago

    My reflection for today...

    97

    I’ll never forget the emotions I was feeling that morning. I had just gotten to work and was sitting in my cubicle. Everyone was going about their normal day at...
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    Thanks everyone for your replies! After seeing my...

    Thanks everyone for your replies! After seeing my doctor last week, getting a CT scan, extensive PFT's, etc...we have determined it's asthma. I'm unable to tolerate almost all inhaled medications...
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