Search results

  1. 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.
  2. 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.
  3. 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!
  4. 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?
  5. 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!
  6. K

    Colistin for home infusion-do you mix it yourself?

    I do and yes they are only good for 7 days in the fridge
  7. 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/...
  8. 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.
  9. 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...
  10. K

    Liver Transplant before Lung Transplant?

    Has anyone had a liver transplant way before they needed a lung transplant? I'm curious as to how this works as I know liver and lungs need to come from same donor
  11. K

    Tips for Air Travel with IV meds

    I will be flying out of town while on IV meds and I've never flown with them before. Wondering what tips you guys have to getting though security and what not. I do have TSA Pre-Check so that might help too. Thanks!
  12. K

    Right Heart Catheterization

    So I have to get all the invasive testing out of the way for my transplant stuff. While really I'm still not sick enough to be listed, my transplant doctor wants this information for my chart for a baseline type of thing. This test however, has me beyond nervous. I have no idea what to expect...
  13. K

    Need ideas for exercise

    So I'm having issues with coughing up blood anytime I get my heart rate up. It's annoying and some of the most basic exercises set it off. I can't lay on my back at all and doing yoga even makes it happen...even the most low key poses. My doctors have looked at the vein that is causing it and...
  14. K

    Anyone taking Avycaz?

    Has anyone started taking Avycaz during their tune-ups? I might be switched over from Colistin to this. Wondering what your experience with it was. How did it make you feel... ect.
  15. K

    Five Feet Apart CF Movie!!

    For those of you who don't know March 22, 2019 in theaters EVERYWHERE there is a movie called Five Feet Apart that is about a friendship between two CF patients who meet while they're both being treated in the hospital. Even though the title is about a foot off from being'm...
  16. K

    Make your hospital bed more comfortable!!

    I just wanted to share this tip because not many people think to do this but it's greatly improved my hospital stays. I always bring a twin sized egg crate foam mattress with me to the hospital, with my own sheets. I put it on top of the hospital bed mattress and it has made all the difference...
  17. K

    What do you say you do?

    When meeting new people, I always fear the question of "what do you do for a living"? Since i'm not stable enough to work and don't want to get into detail about my CF, I always find it hard to answer this question. I want people to get to know me before knowing I have CF and the judgement...
  18. K

    Sweat test before starting Symdeko?

    I just got approval though my insurance for Symdeko and will be switching over from Orkambi. Did anyone who has started on Symdeko have a sweat test done before they started on it? My clinic keeps talking about it before they start me on it and I can't seem to get a straight answer from anyone...
  19. K

    April is Organ Donation Awareness month

    April is Organ Donation Awareness month. This month lets try and let people know how important it is to become an organ donor. Let's try and get more people to agree to do it so more of our fellow Cfers have lungs ready for them when they need it. Those of you who have had transplants, let...
  20. K

    Running out of IV med options

    So after talking with my doctor today, it seems like my arsenal of IV meds is pretty much gone. So I was curious as to what happens when your sputum becomes resistant to IV antibiotics. We've already tapped into the Infectious Disease resources too. Wondering if anyone has reached this point and...