Search results

  1. K

    Anxiety on Trikafta

    Your anxiety is valid. I had to talk to my therapist about this. We have known and accepted one way of life for so long. Battling CF and all that comes with it, has put us in battle mode all our lives. We're on high alert all the time and always looking over our shoulders. No one really ever...
  2. K

    Liver Enzymes and CFTR Modulators?

    These meds are hard on your liver. So this is a possible reaction. If he was taking the morning and night time dose, the issue could be that his liver is holding on to the ivacaftor (one of the meds in the triple combo) longer than it needs to. Some of us are only taking the morning dose and are...
  3. K

    Trikafta and liver disease

    These meds are hard on your liver. So this is a possible reaction. If he was taking the morning and night time dose, the issue could be that his liver is holding on to the ivacaftor (one of the meds in the triple combo) longer than it needs to. Some of us are only taking the morning dose and are...
  4. K

    Getting back to normal

    No I've had hearing loss for years from Tobi
  5. K

    Getting back to normal

    With Trikafta improving and stabilizing many of us, the idea of getting back to a semi normal life (once the pandemic is over) and reconnecting with people who I've lost touch with after being sick for so long is scary to me. I feel lost and out of touch with the world and not sure how to jump...
  6. K

    Chinese coronavirus vaccine could be ready for trials next month?

    No, they're saying that the vaccine that China has been working on will be ready to be tested.
  7. K

    Trikafta and tendonitis

    Has anyone been diagnosed with tendonitis since they started taking Trikafta? I now have it in 3 places and I'm curious if this is a side effect. My daily activities haven't changed since I started so not sure where this is coming from.
  8. K

    Vest? Symdeko?

    I'm so sorry for your loss. My advice would be to see if you can contact the respiratory therapist at your sister's clinic and see if she is able to do anything with the vest. Due to cross infection protocols, it might be risky to just send to another CF patient.
  9. K

    Trikafta Q&A, Experiences, etc.

    My hair has always been kinda oily even before Trikafta, but I will say invest in dry shampoo. It helps.
  10. K

    Colistin for home infusion-do you mix it yourself?

    I've never heard of it actually. I've only been able to use Colistin as my main big IV drug for the past couple of years because Tobi gave me hearing loss. I just learned something new today...thank you!
  11. K

    Eyes Burning on Trikafta

    Do you have sinus issues on top of CF? Trikafta cleans out all that too so I'm wondering if that might be part of it. Have you tried some eye drops at all for relief?
  12. K

    Colistin for home infusion-do you mix it yourself?

    Np...I was able to start doing IV colistin at home about 2 years ago so this was new for me too. I was just as confused as you at first since I also inhale it too. But it's nice to know that we can do this at home and that we don't have to mix it! Good luck and hope you feel better soon!
  13. K

    Colistin for home infusion-do you mix it yourself?

    I do and yes they are only good for 7 days in the fridge
  14. K

    Symkevi and liver function

    So the CF meds are hard on our livers, however there might be some hope for you. What doctors and researchers have found with some of us, our livers are holding onto too much of the Ivacaftor (which is the second med in Symdeko/Symkevi). They have us stop taking the night time dose of Symdeko/...
  15. K

    Trikafta Q&A, Experiences, etc.

    When it comes to testing and side effects, any symptoms that occur during a study are recorded as a side effect because they don't know what's from the med and what's not. The flu is listed as one too. Just to show that this med has no effect on it.
  16. K

    Trikafta Q&A, Experiences, etc.

    I've been on Trikafta for 3 weeks now and I have not noticed a change in my blood sugars. It might still be too soon to tell though. I honestly think you should start her on it now anyways. If you're nervous, just have extra snacks for her to take with her or if your worried about her being on...
  17. K

    9 years since borderline sweat & 1 gene mutation found. Retest??

    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 diagnosed with CF when genetic testing is done.
  18. K

    Disability and working part-time

    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 couple of years so I'm not sure the exact amount.) Anything over that amount goes against you and...
  19. K

    Trikafta with no purge???

    Not everyone's purge begins right away. When I took Symdeko and Orkambi, it was a couple of weeks before my purge period started.
  20. K

    Trikafta eligibility

    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/
Top