i started kaftrio ( trikafta ) for me back in febuary i was so unwell waiting for a double lung transplant. its saved my life and i have no started college!.
Wishing you good thoughts, good health, and good luck! Try to set yourself up for virtual meetings so you can combat the loneliness. I appreciate your resilience and positive attitude Bethinn!
THIS IS AMAZING!!!! Such an exciting future ahead I am sure. Of course, its a stumbling block in relation to the bug but you've gotten over it before, you will this time as well. Love you x
OOF that is an update and a half! amazing news about the trikafta!!! as irritating as it is to be stuck in the hospital during this time, especially having to do the treatment that you've managed not to have for so long... ahhh IVs... it'll be worth it to get the trikafta, and then carry on with the rest of your (much longer and happier) life!! bye bye super bug, hello super drug 😝 also, i reckon you will do great with the uni work! ❤
Wishing you the best of luck with everything, uni and treatment. Fingers crossed that kaftrio works miracles (I start today!!!). I know how awful NTM treatment is I hope it’s at least effective for you this time round. xxx
Bethinn Evans btw forgot to mention- if you have to do amikacin again I’d recommend talking with your doctor about diluting it with salbutamol instead of saline, I was really struggling with a sore throat when I did ami but dr suggested trying this and it’s no where near as bad. So maybe worth discussing it if you need to. Xxx
I have question for you over lung transplant for cystic fibrosis. Can bacterial from old cystic fibrosis lungs infected new donor lungs after lung transplant for being sill being in CF sinus? Cf patient who had lung transplant call Eliana cotter stay that she had some lung infections like her old lungs can that can happen .
Wish you luck! hope it goes well, I know how shit hospital time is, I get refuced home iv's because I have Pseudomonas and my body is starting to not work with some types of antibiotics, not as bad as your infection lol but still, ik how frustraiting it is when a 2 week admission turns into 2.5 or 3.5 weeks because they had to switch drugs and because they have to monitor my liver on them now days. so I never have home ivs :/
Hi Ryan, thanks for sharing with me :) that really sucks, things rarely run smoothly do they!? I hope you are relatively well now at least and managing to keep out of the hospital :)
i started kaftrio ( trikafta ) for me back in febuary i was so unwell waiting for a double lung transplant. its saved my life and i have no started college!.
Wishing you good thoughts, good health, and good luck! Try to set yourself up for virtual meetings so you can combat the loneliness. I appreciate your resilience and positive attitude Bethinn!
THIS IS AMAZING!!!! Such an exciting future ahead I am sure. Of course, its a stumbling block in relation to the bug but you've gotten over it before, you will this time as well. Love you x
OOF that is an update and a half! amazing news about the trikafta!!! as irritating as it is to be stuck in the hospital during this time, especially having to do the treatment that you've managed not to have for so long... ahhh IVs... it'll be worth it to get the trikafta, and then carry on with the rest of your (much longer and happier) life!! bye bye super bug, hello super drug 😝 also, i reckon you will do great with the uni work! ❤
Wishing you the best of luck with everything, uni and treatment. Fingers crossed that kaftrio works miracles (I start today!!!). I know how awful NTM treatment is I hope it’s at least effective for you this time round. xxx
Thanks Isabel! Good luck with the Kaftrio, I hope it's awesome :D
Bethinn Evans btw forgot to mention- if you have to do amikacin again I’d recommend talking with your doctor about diluting it with salbutamol instead of saline, I was really struggling with a sore throat when I did ami but dr suggested trying this and it’s no where near as bad. So maybe worth discussing it if you need to. Xxx
@@isabelfranchi8755 That's really interesting! I'll be sure to ask my team if I can do that too. Thanks! xxx
I have question for you over lung transplant for cystic fibrosis.
Can bacterial from old cystic fibrosis lungs infected new donor lungs after lung transplant for being sill being in CF sinus? Cf patient who had lung transplant call Eliana cotter stay that she had some lung infections like her old lungs can that can happen .
Hi! In Italy its impossibile take trikafta yet. We hotel ti use it asap.
My daughter has CF .se il 18 .
U r so beautuful .
Good luck .
Wish you luck! hope it goes well, I know how shit hospital time is, I get refuced home iv's because I have Pseudomonas and my body is starting to not work with some types of antibiotics, not as bad as your infection lol but still, ik how frustraiting it is when a 2 week admission turns into 2.5 or 3.5 weeks because they had to switch drugs and because they have to monitor my liver on them now days. so I never have home ivs :/
Hi Ryan, thanks for sharing with me :) that really sucks, things rarely run smoothly do they!? I hope you are relatively well now at least and managing to keep out of the hospital :)