Ziv gudes

from my expereince, i wouldnt say “gaslighting” but yes… i trust nobody when it comes my CF obviously symptoms. only my CF doctor.  if i am getting to the ER , i will tell them everything that needs to be done to determine whats the cause. i am learning everyday on my symptoms and generaly about the desease -becuase that i trust nobody. if they…[Read more]

Even there was a cure for CF. I dont think my life will change drastically.
It will change… i could travel more without the concern of medication time/inhalation/ pulmonary Drainage
At daily routine i wont need PD and Inhalations . And… Meal time.. this is maybe the hardest concern for me with pulmonary drainage too (because i have to rely…[Read more]

i dont think its far more good than orkambi/symdeko… maybe a little better but far from “live changer”.
from my experience of 3.5 years with orkambi didnt change my live…

oh . so FEV1 and his “friends”

sorry about my ignorence but what its PFT ?

it sometimes happen to me too, the one thing that usually happen is the sputum culture. i cant get at the clinic “regular” sputum like from the deep of the lungs and this is effecting the treatment i get.. that maybe i have a bug in the airway that i cant know about it and even my doctor cant. weeks or 2 before and after the “right” sputum is out…[Read more]

i didnt hear about it.. maybe at periods of antibiotics(IV) when the digestive system is affected by that…
but not a chronic pain…

Luisa Palazola i am sorry for you. really. thats not ok that you were on the drug trial and your FEV1 increased 10% and they take it from you (the same increase about orkambi by the way) . and yes. i heard about the Triple Combination. i not really sure that i understand it correctly if this is a New Drug that has succeed at the 1st trial on…[Read more]

i am with Orkambi for 3 years. my doctor want me to replace it with Symdeko because the interaction between medicines ( anti fungal medicine ) and you are saying that symdeko is safer. why? i know there is less side effects than with the orkambi (that could lead to FLU symptoms/shortness of breath/whizzing) but i get over it and never had the…[Read more]