Recent content by erock77

  1. E

    Eyes Burning on Trikafta

    Hey Mkos, I'm having similar effects. Started Trikafta in early December. It's not really painful, but my eyes often feel sore, like they're dry or tired. I've also had odd energy fluctuations. super energetic the first week, and between tired and normal since. Lung impact has been amazing though.
  2. E

    Trikafta Q&A, Experiences, etc.

    Similar to others.. I'm 10 days on Trikafta, single dF508 w/ a nonsense mutation. I was feeling sick and congested before my appt last week, I would normally start antibiotics but I thought let's try Trikafta! I'm 42 and FEV1 was ~55%. Within a few hours of the first dose the thick mucus started...
  3. E

    Ideas for recurring hemoptysis

    I came on here looking for more solutions too since I'm relapsing today, but have been pretty good for a while. I'm pasting some tips I posted before... How bad is the hemoptysis? I've had 6 embolizations, it's been several years since the last. I would have hemoptysis pretty regularly but we...
  4. E

    600 years’ supply of cystic fibrosis drug destroyed in price row

    Wow, that's pretty f'ed up. I wanna like Vertex b/c they're creating ground-breaking meds for us, but their business practices sure make it hard to be a fan. How can they hold strong that their drug is worth so many millions when they're willing to destroy it and gain nothing.
  5. E

    Phase 3 results for VX-445 triple combo

    Can someone clarify this key bullet: "-U.S. NDA and EU MAA planned for the third and fourth quarters of 2019, respectively-" Does that mean they're applying for approval? Or they're expecting approval? I saw similar results published a few months ago and was very excited, maybe it was for a...
  6. E

    Adults with CF what are your jobs?

    I'm a solar engineer, degree in Mechanical Engineering. I thought similarly when I was in high school, thinking I shouldn't pursue anything physically demanding. Working from home didn't really exist at the time and I wouldn't necessarily pursue a career with that in mind. I've made some great...
  7. E

    Problems gaining muscle/strength (with CF)

    Hi, So I've been weightlifting for the better part of 5-7 years. I've done a fair bit of reading and occasionally worked with a fitness trainer to come up with maybe 4-5 programs over this time. I started out powerlifting (5-3-1 program), some circuit training, and various bodybuilding routines...
  8. E

    Mass of mucus in chest

    Kenna: It's just called Sodium Bicarbonate. It comes in 5ml vials and you need syringes to extract. Hasn't gone the route where there are mass produced ampules yet. Yes I have noticed a difference, probably a few % FEV1 gain but I feel like my coughing symptoms have reduced. Regarding IPV, I...
  9. E

    Mass of mucus in chest

    Seems like she's doing the right things. When she huffs: take a deep breath and hold several seconds if possible. She may already know this. Obviously bronchodilators can help. Another note, I've recently been put on nebulized sodium bicarbonate, apparently changing the pH environment helps thin...
  10. E

    Nebulizers for Travel

    Hi, I use the Pari Trek S, the battery is a bit pricey so there's an option to just get the compressor. It comes with a car adapter or can plug in the wall. I read a bunch of reviews last year and this came out best, unfortunately I forget why. Maybe it was the pressure. For longer trips...
  11. E

    Thanks to Sharktank and their work with non sense mutations!

    Has anyone tried this yet or is there some study showing results? I'm intrigued and sent the info to my doc for their opinion.
  12. E

    Embolization for hemoptysis

    How bad is the hemoptysis? I've had 6 embolizations, it's been several years since the last. I would have hemoptysis pretty regularly, but we only embolized if it got really scary. Like 10 minutes where it just won't stop gurgling and choking me, followed by repeat bouts through the day. If it's...
  13. E

    Hemoptysis from exercise

    Yes. Used to happen to me regularly, I couldn't run across the street to catch a bus without coughing up blood. Take it easy for a bit (days), then ease back into it. For me I think it relates to how hard my heart is pumping blood, the pressure seems to push through the delicate scar tissue that...
  14. E

    itchy cough & trachea

    Wow I can't believe it's been over 3 years since I wrote this. I recently had a streak of at least a few months without this symptom. Sleep is glorious! Rather the lack of is horrible. Anyway it started up again a couple weeks ago after a late night with some drinks and sporadically since. I...
  15. E

    Ideas welcome: organizing tablets and capsules in a sensible way

    I only arrived to a system I'm pretty happy with in the last couple years. I used to dispense pills each time, usually twice/day. I moved to the weekly pill boxes where I spend like 10 minutes w/ some entertainment in the background dispensing once per week. Then I usually take them w/ breakfast...