ziv-gudes
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from my experience, 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 say
” there is no need for that exam ” or something, i am insisting , and they give it to me so i can be relax that i dont have what i think i have.. like Bowel Obtruction for that matter, that i insist to have a CT with contrast “telebrix” and this is digusting…
and after that , when it came negative for Bowel OB, i went home. -
ziv-gudes
MemberApril 7, 2020 at 10:27 am in reply to: What We Will Do When We Have the Cystic Fibrosis CureEven 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 on someone to come to my house every day ) and the hours i spend because of it..sometimes i even cancel my activities for the day so i could wait for my Physical therapist to come.. thats maybe the biggest burden of all treatments/needs for cf patient for me.
Everything else? My characteristic will not change because i am 28 years like that and thats what i know, every day in my life the 1st thing that i do after i brush my teeth is do inhalationfor 45 minutes…
After all what i have mentioned before i think there will be change at my life.. maybe small one’s at time.. but not drastically.
Regards. -
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
MemberOctober 11, 2019 at 9:57 am in reply to: Physical symptoms as a result of clinic anxiety?oh . so FEV1 and his “friends”
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ziv-gudes
MemberOctober 11, 2019 at 1:42 am in reply to: Physical symptoms as a result of clinic anxiety?sorry about my ignorence but what its PFT ?
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ziv-gudes
MemberOctober 9, 2019 at 9:48 am in reply to: Physical symptoms as a result of clinic anxiety?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 at the pulmonary drainage by physical therapist or during inhalation (less likely). the second ; i can feel exacerbation few days after my clinic appointment and while i was there ..they definitely didnt exist then…
the 3rd and most annoying ! – i cant know how my FEV1 will be . even if i feel great.. this test can bite me in the ass.. i can feel that i breath freely and my FEV1 drops 10-12 %.. or vice versa i know for sure that i have exacerbation and i feel less good and obviously the doctor will prescribe me antibiotics for 2-4 weeks.. and boom ! my FEV1 its the same (which is good) or even higher !! i 28 years old and this test never gets easier. -
i didnt hear about it.. maybe at periods of antibiotics(IV) when the digestive system is affected by that…
but not a chronic pain… -
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 experience to feel that.. the liver enzymes its the same thing about the symdeko like the orkambi.. so … whats the difference? (except the interaction between medicines)
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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 human. or this is something else with 3 drugs combination.
my doctor has said that the VX-659 it will be T-H-E D-R-U-G of all. FEV1 increasing closely to 17 Even 20% maybe… something Huge. she said that it will be in the market year and half – 2 years from now.
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