Search results

  1. R

    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...
  2. R

    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.
  3. R

    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...
  4. R

    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 :)
  5. R

    Phase 2 study for new enzymes to begin!

    Great news!
  6. R

    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...
  7. R

    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...
  8. R

    Phase 3 results for VX-659 triple combo

    So exciting!!!
  9. R

    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...
  10. R

    Five Feet Apart CF Movie!!

    Can't wait to see it!
  11. R

    Animated Story: Growing up with CF and 2017 Transplant Part 1

    You're very talented! I enjoyed it :)
  12. R

    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...
  13. R

    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...
  14. R

    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...
  15. R

    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.
  16. R

    Symdeko Headache

    I definitely had headaches for a few weeks when starting both Orkambi and Symdeko. They eventually went away. Good luck!
  17. R

    Kalydeco and unwanted weight gain???

    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 lbs in the first year. Not a happy camper! So, just recently I changed my eating habits and have...
  18. R

    Two Years Ago

    Thanks Amber!
  19. R

    Two Years Ago

    Great news Ratatosk. That makes me so happy to hear ❤️
  20. R

    Two Years Ago

    Jaimers - Yes! I can't wait for the new ones to come out. Some of them look so promising. :)