Cystic Fibrosis Forum (EXP)

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Recent content by cjones

  1. C

    For people taking Orkambi

    Brian, I felt the same way toward the end of those 2 1/2 weeks.. absolutely no energy and super weak. I had been trying to work at home (I'm a computer programmer) throughout all of that and I was so out of it, I was confused and unfocused and ended up taking time off. I will say though that...
  2. C

    For people taking Orkambi

    My FEV1 is low but pretty stable at about 28%. I've undergone transplant evaluation but it's not necessary yet.. I am 30 years old, still work full time, don't require oxygen except during bad exacerbations, and can generally function pretty independently!
  3. C

    For people taking Orkambi

    wes2112, I am about to start week 5 of Orkambi and I, too, had a very hard time the first 2 1/2 weeks. Every day (even every hour) was different, each throwing a different side effect my way.. chest tightness, shortness of breath, fever, chills, hot flashes, nausea, stomach issues, extreme...
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