@@ginnylav6413 so glad that trikafta is working so well for you, truly wonderful ❤️ Do you have any idea how effective it has been for people with double DF508?
I don't know for sure, but I think I've heard that they generally have better results. If you're on FB, you should join the group called "Trikafta/Kaftrio Cystic Fibrosis". You'll be able to see experiences shared by others with double DF508!
Hello. Do you have a difficult experience through which you can tell the answer to one question, please tell me, if sputum, which occurs with purulent bronchitis or, for example, with bronchiectasis, is always swallowed, then can it somehow negatively affect? The main thing is that the sputum comes out of the respiratory tract and it can be safely swallowed without worrying about any harm? As far as I understand, the main thing is to cough up and clear the airways, and when swallowing, sputum is processed like any food and this process is physiological.@@ginnylav6413
Two years!!! While there may not be happening with CF on a weekly basis to report on, there is still a lot to know. The fact that you work full time is amazing to me. I know it's remote but it's still full time which I never thought you would have the energy for. Plus, you have my GrandGus that you are taking care of. MUST have more reporting on him since he is hilarious, quirky, talkative, etc. Love you kiddo!!!
I don't know if you're going to read this, but it's so rare for me to hear someone say that they've pretty much experienced the same things that I have, literally every detail, every small breathing and discomfort, embarrassment, exhaustion... I can understand it, and it's amazing to hear the effects that this remedy gives... I'm from Chile and I'm 17 years old, in my country there are very few people who have accessed trikafta since it is not a medicine that the government provides freely to everyone due to its value and etc, but with my family we are already in the middle of the process to achieve it, it has been very hard, the anxiety is so intense, but I know it will be worth it and I will happily start the treatment in about 1 month, thanks for sharing your experience!! 😊 I'm gonna make a list too hehe
OMG yes! I'm in it since April and i'm not exagerating when I say it's life changing, (I had a serious alergic problem but it's nothing to worry about now) I feel so healthy, no more coffing, small breathing, doing exercise again, my numbers increased a LOT in such a short time... I don't even have pseudonomas on my medical exams! I've been feeling like I don´t have anything even though I obviously still have it, and it's amazing. @@mindybunny
Hey Ginny, Thank you for being so open & honest about life with Trikafta. I really appreciate it 😊 It is really awesome to finally see the c.f community benefitting overseas with major advances in the Cystic Fibrosis world 😊💙 I'm still hoping to get the chance to try Trikafta myself, as are many, many Cystic Fibrosis suffers in New Zealand too 🌹 Sadly in New Zealand, we still "don't" have access to this life saving, "game changer" Trikafta 😔 It's been nearly 10 years since the press release of miracle, life saving, wonder drug..."Orkambi" in the Cystic Fibrosis world... However we still don't have access to Orkambi or Symdeko either 😔 Sadly the few friends I had contact with via fb online, have passed away 😔🌹 This saddens me, as it shouldn't be this way. Guess what I'm trying to say is...us kiwi's can't wait for Trikafta, we need it now. Too much carnage has been spent 😢 My hope & prayer is to see New Zealanders who have Cystic Fibrosis, have access to Trikafta so we can all have a better, brighter future for today, tomorrow, the next day & forever 🌹 I'd love to talk more with you about your amazing journey since taking Trikafta. It sounds like it has really been beneficial for you in the long term. Here's my email: Lillymail.247@gmail.com Well take care, S 🌻
Hi Ginny, thanks for the update! You’re awesome 👍🏼
What mutation do you have? Sorry if I missed it in the vid 😬
Great question! I have DF508 and R1162X.
@@ginnylav6413 so glad that trikafta is working so well for you, truly wonderful ❤️
Do you have any idea how effective it has been for people with double DF508?
I don't know for sure, but I think I've heard that they generally have better results. If you're on FB, you should join the group called "Trikafta/Kaftrio Cystic Fibrosis". You'll be able to see experiences shared by others with double DF508!
Hello. Do you have a difficult experience through which you can tell the answer to one question, please tell me, if sputum, which occurs with purulent bronchitis or, for example, with bronchiectasis, is always swallowed, then can it somehow negatively affect? The main thing is that the sputum comes out of the respiratory tract and it can be safely swallowed without worrying about any harm? As far as I understand, the main thing is to cough up and clear the airways, and when swallowing, sputum is processed like any food and this process is physiological.@@ginnylav6413
Two years!!! While there may not be happening with CF on a weekly basis to report on, there is still a lot to know. The fact that you work full time is amazing to me. I know it's remote but it's still full time which I never thought you would have the energy for. Plus, you have my GrandGus that you are taking care of. MUST have more reporting on him since he is hilarious, quirky, talkative, etc. Love you kiddo!!!
Love you!
I don't know if you're going to read this, but it's so rare for me to hear someone say that they've pretty much experienced the same things that I have, literally every detail, every small breathing and discomfort, embarrassment, exhaustion... I can understand it, and it's amazing to hear the effects that this remedy gives... I'm from Chile and I'm 17 years old, in my country there are very few people who have accessed trikafta since it is not a medicine that the government provides freely to everyone due to its value and etc, but with my family we are already in the middle of the process to achieve it, it has been very hard, the anxiety is so intense, but I know it will be worth it and I will happily start the treatment in about 1 month, thanks for sharing your experience!! 😊 I'm gonna make a list too hehe
Have you been able to start your treatment and how are you feeling if you have been?
OMG yes! I'm in it since April and i'm not exagerating when I say it's life changing, (I had a serious alergic problem but it's nothing to worry about now) I feel so healthy, no more coffing, small breathing, doing exercise again, my numbers increased a LOT in such a short time... I don't even have pseudonomas on my medical exams! I've been feeling like I don´t have anything even though I obviously still have it, and it's amazing. @@mindybunny
Happy 2 year anniversary!! Please make a Gus intro video
Hey Ginny,
Thank you for being so open & honest about life with Trikafta.
I really appreciate it 😊
It is really awesome to finally see the c.f community benefitting overseas with major advances in the Cystic Fibrosis world 😊💙
I'm still hoping to get the chance to try Trikafta myself, as are many, many Cystic Fibrosis suffers in New Zealand too 🌹
Sadly in New Zealand, we still "don't" have access to this life saving, "game changer" Trikafta 😔
It's been nearly 10 years since the press release of miracle, life saving, wonder drug..."Orkambi" in the Cystic Fibrosis world...
However we still don't have access to Orkambi or Symdeko either 😔
Sadly the few friends I had contact with via fb online, have passed away 😔🌹
This saddens me, as it shouldn't be this way.
Guess what I'm trying to say is...us kiwi's can't wait for Trikafta, we need it now. Too much carnage has been spent 😢
My hope & prayer is to see New Zealanders who have Cystic Fibrosis, have access to Trikafta so we can all have a better, brighter future for today, tomorrow, the next day & forever 🌹
I'd love to talk more with you about your amazing journey since taking Trikafta. It sounds like it has really been beneficial for you in the long term.
Here's my email: Lillymail.247@gmail.com
Well take care,
S 🌻
How are you feeling now and has this medication reached your country yet? ❤
Thank you so much! I haven’t got yet, but trying to get it…
👏👏
Mannitol/atrazine and uranium