Latest activity

  • K
    kenna2 replied to the thread 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...
  • S
    Sonja35 posted the thread Vest? Symdeko? in Adults.
    My sister passed from CF and left behind a gently used Hill-Rom vest. She also left behind a year's worth of Symdeko and I'm not sure...
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    bharison replied to the thread Exercise and Trikafta.
    I am approaching one month on Trikafta. I already feel I have more energy and don't get SOB climbing up hills or swimming my laps. I am...
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    Mkos1980 replied to the thread Trikafta Q&A, Experiences, etc..
    Well I finally went for my first appt after starting Dec 4th. Although I feel great, my baseline was 70-72 fev1. Ive always been...
  • R
    Ratatosk replied to the thread Exercise and Trikafta.
    My teen has indicated he is able to breath deeper, better stamina during his phy ed classes.
  • R
    Ratatosk replied to the thread Eyes Burning on Trikafta.
    Could be a correlation between sinuses, tear ducts, etc. No CF here, but I have sinus issues and have had plugged tear ducts, dry eyes...
  • P
    I am wondering if anyone has experienced increases in their exercise tolerance and strength after getting on Trikafta? For me, I have...
  • P
    PeterXC replied to the thread Eyes Burning on Trikafta.
    Hey there Mkos, I've had the strange occurence of my eyes watering (like I am crying) in the middle of the night and yes also some...
  • R
    Ratatosk replied to the thread Eyes Burning on Trikafta.
    DS had this initially and used some rewetting drops, but hasn't had issues since.
  • R
    Ratatosk replied to the thread Symkevi and liver function.
    My teen had been on Actigall (Urisidiol) since he was an infant due to higher liver function test results. Since he was doing well on...
  • R
    Ratatosk replied to the thread Trikafta Q&A, Experiences, etc..
    Noticed my teens nose has had more breakouts, a couple larger blemishes. Areas of his skin that have always been a bit oilier have...
  • K
    kenna2 replied to the thread 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.
  • B
    bharison replied to the thread Trikafta Q&A, Experiences, etc..
    Yes I have had oily hair since on Trikafta just three weeks. I was on Ivacaftor for 5 years and noticed oily hair then but now it is...
  • B
    bharison replied to the thread Trikafta Q&A, Experiences, etc..
  • jimcaldwell
    It's been a little over 3 years since we released our first product Indrepta in a joint project between Sharktank Research Foundation...
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