Good on you for having the courage to listen to your own body!!! I'm one of those who was never offered K., but I'm ok with that. Instead I have been watching a bunch of you guys who have tried any of these newer generation of meds, with very mixed results: By what I have seen (like here on yt) very few actually seem to be happy with the results, a whole bunch complain about side-effects and even more, so it seems, have stopped making vids altogether... Wishing you all the best for the future GBY =)
@@ripbbl5053 aw thank you so much!! (I am kinda proud of myself for that I think) as it is so easy to just get swept up in listening to everything’s doctors tell you to do - as that’s what we are taught will keep us healthy ofc! I’m sorry you have never been offered kaftrio, as even with the mixed results I’m sure it must feel pretty frustrating seeing people try something you can’t yet :( honestly I think similarly with symkevi, (where people had such high expectations) when you are on it this fairytale bubble suddenly pops & you are reminded that it’s just another medication (which often brings new problems) god it’s so complicated 🙃 I’m sure though for a lot of patients, especially from a lungs perspective, the pros will outweigh the cons - I hope so anyway?! But regardless I’m sure there will only be more drugs like this coming out over the next years!! We have gone from having 0 to now 3 different kinds of these drugs, so the only way is up 🥰🥰 hope you are doing well x
@@gingerels Don't be sorry, ha ha, I told you I was ok with it!!! I'm one of the 'older ones' and so I'm sure I'll never be offered any of these new ones, as they probably think I would ruin their 'success data', ha ha ha. Instead, when I heard of these new meds when they were still in their research stages, I went the opposite way: I came off everything and went 'all natural', - diet, nutritional supplements, herbs & spices and now feel better than I did 20 years ago!!! I obviously still have cf, ha ha ha [ =( ] and I know it, but at least I have ONLY that!!!!!!! ...and no sh;!!y side-effects of ANYthing. But 'listening to my body' is now one of the key elements of my 'treatment plan', - which is why I was so chuffed to see you develop the courage to do that with YOUR circumstances. All the best & be blessed ♥️
@@ripbbl5053 sorry sorry, was just checking :D ugh if that is the case that's pretty ridiculous phaha honestly tho I'm like oops sorry ruining your data here :/ That's so interesting, & a fascinating idea, just going the more natural route seeing how much your body can do on it's own! Yeah 100% I get that, it's so strange as I really just think it's luck of the draw. like for so many years I literally never suffered from side effects of anything, then all of a sudden even with drugs I had been taking for years - my body just went NOPE ?! its frustrating that the side effects can do more damage than not taking the drug in the first place but hey ho I like the sound of that treatment plan !!! :) ♥️
Also have Cf, pancreatic sufficient, and trikafta made me feel like I was operating my body in 3rd person. Couldn’t control my body, insomnia, decline in mental health, severe migraines and blurry vision. it also hasn’t helped much of my CF symptoms at all! I’ve been on it 7 months, and my doctor has now suggested I stop the medicine soon. Still not giving up hope because of all the praise my doctor has said about it, but so far this medication has been nothing short of horrible for me. It’s strange that people say a small percent of people can’t handle it, because I’ve read thousands of responses of people who discontinue it as well. The media is sus! Hope you’re doing well
I have CF and what I discovered is chlorite quartz crystal helps me breath greatly. Give it a shot. Hold one on your right hand for at least 15 minutes and see how your breathing responds. ❤ Many blessings and wishing you well and great health and longevity 🙏🌞🌚
@@gingerels just so you know... its been a while. but i gave up on kaftrio as well. i can't handle it mentally, its killing me inside, im depressed and suicidal. so now ive stopped kaftrio and i feel bettter allready :)
I was blown away by this video.. I can't claim to know nor understand what having a chronic illness is like.. I can only imagine. Your video,.. this video.. has really clarified so much. Really 'brought home' the impact of what you have had to deal with and LIVE with (capital letters there to underline the actual 'day to day, relentless living with' aspect) since you were born. It's a great video.. and you really do get across the humanity and realism of life for someone with CF. No-one has the right to judge what they will not endure. I'm in awe.. brilliantly addressed ❤️
Aw thank you so so much Linda!!! Thank you so much for watching & listening & being so empathetic 🥰 I really hope so as that would be fab! Lots & lots o love to you & JJ x x
I'm so sorry to hear that you are struggling with side effects :( but thank you so much for sharing this. it is always so reassuring to hear other people have experienced this too!! I hope it starts to become easier for you asap, take care x
this video is so, so important. thank you for making it, elaina 💛 i have nothing but respect and admiration for you, for all of this; for the courage it must have taken to put this video together and post it; for speaking about your experience with such honesty, living your truth proudly (while still being respectful of other folks’ experiences) and choosing to share that with us; and finally, for blocking out outside voices as best you could during an already difficult time, weighing out what’s best for *you,* and making the hard decision to come off kaftrio in the first place. like you said, nothing is simple, and i’m sure none of those things were easy to do; i know i’m a stranger, but i’m proud of you. we know our bodies better than anyone else, and imo it is not only our right but our responsibility to do what we know is going to be the right thing for us, no matter how difficult that choice is or what other people have to say about it. i’m so happy that *you’re happy* with your decision to stop kaftrio! that it turned out to be the right choice for you and that you’re not miserable anymore
aw omg thank you so much for watching & understanding !! honestly I was profusely sweating on uploading it (phahah) but jokes aside thank you so much for this comment it's really so thoughtful of you - & people saying stuff like this reassures me that's its so important for us to all be honest about our experiences & support eachother where we can! i agree entirely, it's so easy to forget that we are actually in charge of our own bodies & what we do with it is actually OUR decision - not every health professional's word is gospel?! ahhh thank you so much, aw I really hope so as that would just be so cool if it could help other people feel like they could talk about this too :) sending love ♥️ x x
It's a shame you had so many problems with Kaftrio, perhaps in time it might be worth giving a second go and see how you get on. I'm an older CFer (55) pancreatic sufficient and I am lucky to have next to no problems with it and the thought of possibly going back to the terrible coughing I had previous terrifies me!! Take care x
ahh sorry I’ve only just seen this!!! aw thank you so much I appreciate that :) yeah I really would like to try it again at some point as I know from a chest point of view no matter how ‘good’ I am it’s ofc only going to benefit my lungs! I just want to try stay sane at the same time 🤣 so pleased it’s been working so well for you that’s so fab to hear, hope you are doing ok x
Hey Cyster, I’m sorry to hear that you had to stop kaftrio. But I honestly would’ve done the same. It’s so important to not just look at the one thing it’ll make better and healthier, if it affect your mental health in a bad way you should not have to keep taking it. I’m from Germany and a lot of cfers here are getting kaftrio now, including my brother. I on the other hand am still waiting to be asked to take it. My lungs got really bad over the last year but that was also my fault, not taking my meds properly etc., but since I can and have gotten better again in the past, my doctors now expect me to get back up to at least 85% lung function in order for me to take kaftrio so I can have a “normal” life. At this point I don’t even have the Energie and will power to fight for it. My doctors think I want it so badly but since everyone gets asked to take it and I have to get back up in order to be considered as a candidate? Like my lungs are currently at a 67% which is better than it was, I was lower than that in the past but until I actually hit the 80% it’ll take me at least another 6 months. That’ll mean my brother who is btw. A smoker will be on kaftrio almost 5months ahead of me 🙃 I hate being at a children’s hospital because I have no right in saying what I want to do with my body. I’m 16 and my brother is 18.
heya lovely, aw thank you so much for this - all of the support & understanding has been so so nice :) I'm so pleased to hear a lot of other patients in other countries are getting access to kafrio too!! aw I'm sorry to hear your lungs have been worse recently - honestly though I think it's impossible to do treatments 'perfectly' all the time!? ugh that sounds like such a frustrating situation I'm sorry to hear that :( I know it's a lot easier said than done, but I think its just about doing the best you can every day, & if that means some days you barely do any meds, & others you do them all - so be it!! As far as being in a children's hospital, I know that can feel really frustrating too & like you aren't being taken seriously, but remember that YOU know your body best, so even if doctors are being tricky, try to be as assertive as you can, as no matter your age, you have rights over your own health & what happens to you
The side effects of Katrio take a long time to die down, its strange. It was around 8 months for me, I had all the same side effects you had but they have finally levelled out. One thing some people have found helps is to take a reduced dose then build up ( or just stay on a lower dose permanently)- if you decide to go back on for the sake of your lungs ever.
ahh sorry to hear you experienced side effects too - so pleased they have levelled out tho!! really appreciate you sharing that, yeah I did try to opt for a lower dose but my CF team weren’t keen which was a shame :( hope you are doing well x
@@gingerels Your doctors aren’t advising you very well then, lots of people do it. Thank you, all I can say is I wish I had Trikafta when I was your age, it would have prevented a lot of the damage I have now. I don’t mean this in a horrible way at all, as I understand side effects are not nice and ultimately it’s your life and you have to do what you think is best but it is easy to fall into the the trap of thinking one’s health will stay the same forever. Things can go downhill very quickly, especially approaching your 30s. I was well and it happened to me. Good luck anyway and wishing you all the best !
Please let me know your thoughts on all of this down below! & if you are on the Kaftrio, how have you found it? 💛
Good on you for having the courage to listen to your own body!!!
I'm one of those who was never offered K., but I'm ok with that. Instead I have been watching a bunch of you guys who have tried any of these newer generation of meds, with very mixed results:
By what I have seen (like here on yt) very few actually seem to be happy with the results, a whole bunch complain about side-effects and even more, so it seems, have stopped making vids altogether...
Wishing you all the best for the future
GBY =)
@@ripbbl5053 aw thank you so much!! (I am kinda proud of myself for that I think) as it is so easy to just get swept up in listening to everything’s doctors tell you to do - as that’s what we are taught will keep us healthy ofc!
I’m sorry you have never been offered kaftrio, as even with the mixed results I’m sure it must feel pretty frustrating seeing people try something you can’t yet :(
honestly I think similarly with symkevi, (where people had such high expectations) when you are on it this fairytale bubble suddenly pops & you are reminded that it’s just another medication (which often brings new problems) god it’s so complicated 🙃
I’m sure though for a lot of patients, especially from a lungs perspective, the pros will outweigh the cons - I hope so anyway?! But regardless I’m sure there will only be more drugs like this coming out over the next years!! We have gone from having 0 to now 3 different kinds of these drugs, so the only way is up 🥰🥰 hope you are doing well x
@@gingerels ❤️❤️❤️
@@gingerels
Don't be sorry, ha ha, I told you I was ok with it!!! I'm one of the 'older ones' and so I'm sure I'll never be offered any of these new ones, as they probably think I would ruin their 'success data', ha ha ha.
Instead, when I heard of these new meds when they were still in their research stages, I went the opposite way: I came off everything and went 'all natural', - diet, nutritional supplements, herbs & spices and now feel better than I did 20 years ago!!!
I obviously still have cf, ha ha ha [ =( ] and I know it, but at least I have ONLY that!!!!!!! ...and no sh;!!y side-effects of ANYthing. But 'listening to my body' is now one of the key elements of my 'treatment plan', - which is why I was so chuffed to see you develop the courage to do that with YOUR circumstances.
All the best & be blessed ♥️
@@ripbbl5053 sorry sorry, was just checking :D ugh if that is the case that's pretty ridiculous phaha honestly tho I'm like oops sorry ruining your data here :/
That's so interesting, & a fascinating idea, just going the more natural route seeing how much your body can do on it's own! Yeah 100% I get that, it's so strange as I really just think it's luck of the draw. like for so many years I literally never suffered from side effects of anything, then all of a sudden even with drugs I had been taking for years - my body just went NOPE ?! its frustrating that the side effects can do more damage than not taking the drug in the first place but hey ho
I like the sound of that treatment plan !!! :) ♥️
Also have Cf, pancreatic sufficient, and trikafta made me feel like I was operating my body in 3rd person. Couldn’t control my body, insomnia, decline in mental health, severe migraines and blurry vision. it also hasn’t helped much of my CF symptoms at all! I’ve been on it 7 months, and my doctor has now suggested I stop the medicine soon. Still not giving up hope because of all the praise my doctor has said about it, but so far this medication has been nothing short of horrible for me. It’s strange that people say a small percent of people can’t handle it, because I’ve read thousands of responses of people who discontinue it as well. The media is sus!
Hope you’re doing well
I have CF and what I discovered is chlorite quartz crystal helps me breath greatly. Give it a shot. Hold one on your right hand for at least 15 minutes and see how your breathing responds. ❤ Many blessings and wishing you well and great health and longevity 🙏🌞🌚
i know the feeling, but your gotta press on, how matter how hard it is. No shame if you cant. congratz belgiu patient with CF
aw thanks lovely - hope you are keeping well & staying safe 🥰
@@gingerels just so you know... its been a while. but i gave up on kaftrio as well. i can't handle it mentally, its killing me inside, im depressed and suicidal. so now ive stopped kaftrio and i feel bettter allready :)
I was blown away by this video.. I can't claim to know nor understand what having a chronic illness is like.. I can only imagine. Your video,.. this video.. has really clarified so much. Really 'brought home' the impact of what you have had to deal with and LIVE with (capital letters there to underline the actual 'day to day, relentless living with' aspect) since you were born. It's a great video.. and you really do get across the humanity and realism of life for someone with CF.
No-one has the right to judge what they will not endure. I'm in awe.. brilliantly addressed ❤️
Aw thank you so so much Linda!!! Thank you so much for watching & listening & being so empathetic 🥰 I really hope so as that would be fab! Lots & lots o love to you & JJ x x
What a great video! So well made and well articulated xx
aw thanks hat hat 🥰🥰 x x
thank you so much for making this video.... it's pretty much what I'm feeling right now 3 weeks in now
I'm so sorry to hear that you are struggling with side effects :( but thank you so much for sharing this. it is always so reassuring to hear other people have experienced this too!! I hope it starts to become easier for you asap, take care x
this video is so, so important. thank you for making it, elaina 💛
i have nothing but respect and admiration for you, for all of this; for the courage it must have taken to put this video together and post it; for speaking about your experience with such honesty, living your truth proudly (while still being respectful of other folks’ experiences) and choosing to share that with us; and finally, for blocking out outside voices as best you could during an already difficult time, weighing out what’s best for *you,* and making the hard decision to come off kaftrio in the first place. like you said, nothing is simple, and i’m sure none of those things were easy to do; i know i’m a stranger, but i’m proud of you. we know our bodies better than anyone else, and imo it is not only our right but our responsibility to do what we know is going to be the right thing for us, no matter how difficult that choice is or what other people have to say about it. i’m so happy that *you’re happy* with your decision to stop kaftrio! that it turned out to be the right choice for you and that you’re not miserable anymore
aw omg thank you so much for watching & understanding !!
honestly I was profusely sweating on uploading it (phahah) but jokes aside thank you so much for this comment it's really so thoughtful of you - & people saying stuff like this reassures me that's its so important for us to all be honest about our experiences & support eachother where we can!
i agree entirely, it's so easy to forget that we are actually in charge of our own bodies & what we do with it is actually OUR decision - not every health professional's word is gospel?!
ahhh thank you so much, aw I really hope so as that would just be so cool if it could help other people feel like they could talk about this too :) sending love ♥️ x x
Well done you!! You did fab here! Sorry it wasn’t everything we thought it would be for you xx
Aw thanks Matilda ☺️ hope it’s going well for you! X x
It's a shame you had so many problems with Kaftrio, perhaps in time it might be worth giving a second go and see how you get on. I'm an older CFer (55) pancreatic sufficient and I am lucky to have next to no problems with it and the thought of possibly going back to the terrible coughing I had previous terrifies me!! Take care x
ahh sorry I’ve only just seen this!!! aw thank you so much I appreciate that :) yeah I really would like to try it again at some point as I know from a chest point of view no matter how ‘good’ I am it’s ofc only going to benefit my lungs! I just want to try stay sane at the same time 🤣 so pleased it’s been working so well for you that’s so fab to hear, hope you are doing ok x
Hey Cyster, I’m sorry to hear that you had to stop kaftrio. But I honestly would’ve done the same. It’s so important to not just look at the one thing it’ll make better and healthier, if it affect your mental health in a bad way you should not have to keep taking it.
I’m from Germany and a lot of cfers here are getting kaftrio now, including my brother. I on the other hand am still waiting to be asked to take it. My lungs got really bad over the last year but that was also my fault, not taking my meds properly etc., but since I can and have gotten better again in the past, my doctors now expect me to get back up to at least 85% lung function in order for me to take kaftrio so I can have a “normal” life. At this point I don’t even have the Energie and will power to fight for it. My doctors think I want it so badly but since everyone gets asked to take it and I have to get back up in order to be considered as a candidate? Like my lungs are currently at a 67% which is better than it was, I was lower than that in the past but until I actually hit the 80% it’ll take me at least another 6 months. That’ll mean my brother who is btw. A smoker will be on kaftrio almost 5months ahead of me 🙃
I hate being at a children’s hospital because I have no right in saying what I want to do with my body. I’m 16 and my brother is 18.
heya lovely, aw thank you so much for this - all of the support & understanding has been so so nice :) I'm so pleased to hear a lot of other patients in other countries are getting access to kafrio too!! aw I'm sorry to hear your lungs have been worse recently - honestly though I think it's impossible to do treatments 'perfectly' all the time!?
ugh that sounds like such a frustrating situation I'm sorry to hear that :( I know it's a lot easier said than done, but I think its just about doing the best you can every day, & if that means some days you barely do any meds, & others you do them all - so be it!! As far as being in a children's hospital, I know that can feel really frustrating too & like you aren't being taken seriously, but remember that YOU know your body best, so even if doctors are being tricky, try to be as assertive as you can, as no matter your age, you have rights over your own health & what happens to you
The side effects of Katrio take a long time to die down, its strange. It was around 8 months for me, I had all the same side effects you had but they have finally levelled out. One thing some people have found helps is to take a reduced dose then build up ( or just stay on a lower dose permanently)- if you decide to go back on for the sake of your lungs ever.
ahh sorry to hear you experienced side effects too - so pleased they have levelled out tho!! really appreciate you sharing that, yeah I did try to opt for a lower dose but my CF team weren’t keen which was a shame :( hope you are doing well x
@@gingerels Your doctors aren’t advising you very well then, lots of people do it. Thank you, all I can say is I wish I had Trikafta when I was your age, it would have prevented a lot of the damage I have now. I don’t mean this in a horrible way at all, as I understand side effects are not nice and ultimately it’s your life and you have to do what you think is best but it is easy to fall into the the trap of thinking one’s health will stay the same forever. Things can go downhill very quickly, especially approaching your 30s. I was well and it happened to me. Good luck anyway and wishing you all the best !