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Ziv gudes replied to the topic Medical gaslighting in the forum Adults With Cystic Fibrosis 8 months, 4 weeks ago
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]
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Ziv gudes replied to the topic What We Will Do When We Have the Cystic Fibrosis Cure in the forum Adults With Cystic Fibrosis 2 years, 11 months ago
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] -
Ziv gudes replied to the topic What will life look like on Trikafta? in the forum Trikafta: Triple Combination CFTR Modulator 3 years, 5 months ago
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… -
Ziv gudes replied to the topic Physical symptoms as a result of clinic anxiety? in the forum Adults With Cystic Fibrosis 3 years, 5 months ago
oh . so FEV1 and his “friends”
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Ziv gudes replied to the topic Physical symptoms as a result of clinic anxiety? in the forum Adults With Cystic Fibrosis 3 years, 5 months ago
sorry about my ignorence but what its PFT ?
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Ziv gudes replied to the topic Physical symptoms as a result of clinic anxiety? in the forum Adults With Cystic Fibrosis 3 years, 5 months ago
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]
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Oh, man, I can definitely relate to this! I’m never good at guessing what my FEV1 will be! I’m also learning that my numbers only reflect how I’m feeling about half the time. As you mentioned, sometimes I’m certain my lung function will be down but the numbers are actually pretty high, and other times I feel really good but my numbers have dropped…[Read more]
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Ziv gudes replied to the topic Chronic pain in the forum Adults With Cystic Fibrosis 3 years, 9 months ago
i didnt hear about it.. maybe at periods of antibiotics(IV) when the digestive system is affected by that…
but not a chronic pain… -
Ziv gudes replied to the topic Symdeko & Experiences in the forum Treatment routines, medicines, and the like 4 years ago
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]
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Ziv gudes replied to the topic Symdeko & Experiences in the forum Treatment routines, medicines, and the like 4 years ago
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]
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Ziv gudes became a registered member 4 years, 1 month ago
No need to apologize! PFT = pulmonary function test 🙂