Cystic Fibrosis News Today Forums | Ziv gudes | Activity https://cysticfibrosisnewstoday.com/forums/members/zivgudes/activity/ Activity feed for Ziv gudes. Sat, 18 Apr 2026 01:43:55 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 00979f582c0b5739c4f022235673528f Ziv gudes replied to the discussion Medical gaslighting in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/medical-gaslighting/#post-18527 Wed, 06 Jul 2022 08:15:23 -0500 Reply to Medical gaslighting

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… Read more

]]> 3f8d6d8cc4f98ca87ec7d09d0a5e1d19 Ziv gudes replied to the discussion What We Will Do When We Have the Cystic Fibrosis Cure in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/what-we-will-do-when-we-have-the-cystic-fibrosis-cure/#post-14966 Tue, 07 Apr 2020 15:27:47 -0500 Reply to What We Will Do When We Have the Cystic Fibrosis Cure

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… Read more

]]> 1addf1666fc38352142de4a17df8f71c Ziv gudes replied to the discussion What will life look like on Trikafta? in the forum CFTR Modulators https://cysticfibrosisnewstoday.com/forums/forums/topic/what-will-life-look-like-on-trikafta/#post-13943 Fri, 01 Nov 2019 22:14:17 -0500 Reply to What will life look like on Trikafta?

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…

]]> 564eb024b082625aa30f11b4a1127c28 Ziv gudes replied to the discussion Physical symptoms as a result of clinic anxiety? in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/physical-symptoms-as-a-result-of-clinic-anxiety/#post-13785 Fri, 11 Oct 2019 14:57:31 -0500 Reply to Physical symptoms as a result of clinic anxiety?

oh . so FEV1 and his “friends”

]]> 63b67f31ab181e1214307a50bd592b44 Ziv gudes replied to the discussion Physical symptoms as a result of clinic anxiety? in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/physical-symptoms-as-a-result-of-clinic-anxiety/#post-13784 Fri, 11 Oct 2019 06:42:51 -0500 Reply to Physical symptoms as a result of clinic anxiety?

sorry about my ignorence but what its PFT ?

]]> f30fb54ea456508e49b3ea3b8627e46c Ziv gudes replied to the discussion Physical symptoms as a result of clinic anxiety? in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/physical-symptoms-as-a-result-of-clinic-anxiety/#post-13762 Wed, 09 Oct 2019 14:48:30 -0500 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… Read more

]]> d7f6a6e1b13320c621e56ffe1e1b9b78 Ziv gudes replied to the discussion Chronic pain in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/chronic-pain/#post-12991 Sun, 30 Jun 2019 11:18:55 -0500 Reply to Chronic pain

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

]]> b071179b23a09c86923e9612ab3a139d Ziv gudes replied to the discussion Symdeko & Experiences in the forum Regimens, Medicines, and Physiotherapy https://cysticfibrosisnewstoday.com/forums/forums/topic/symdeko-experiences/#post-12056 Tue, 26 Mar 2019 19:48:14 -0500 Reply to Symdeko & Experiences

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… Read more

]]> 7186a7599e7625c879e5a11124671304 Ziv gudes replied to the discussion Symdeko & Experiences in the forum Regimens, Medicines, and Physiotherapy https://cysticfibrosisnewstoday.com/forums/forums/topic/symdeko-experiences/#post-12048 Tue, 26 Mar 2019 08:00:55 -0500 Reply to Symdeko & Experiences

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… Read more

]]> 579e63ff3c1a9b61541640c78989611b Ziv gudes became a registered member https://cysticfibrosisnewstoday.com/forums/activity/p/737/ Sat, 02 Mar 2019 22:03:26 -0600 1