Hi Brian I’m 43 and in the UK. I have been on Kaftrio ( trikafta ) for 14 months now and feel epic. I’ve increased my lung function by 30% and think nothing of pushing out 1000 miles a month on my bikes. Don’t get me wrong I wasn’t in bad shape anyway but as we know with this degenerative disease, it’s time we hold onto. Now the tides have turned and most of us I think in the CF world are rolling back the clock. Would love to hear how you are doing now re lung function and general life etc. Wish you all the best from the other side of the CF family across the pond
@@Speakingill I have Delta F508 mutation x 2. For me, mucus plugs are the bane of my existence. I spend up to 5 hours a day trying to cough them up or blow them out my nose. Was really hoping the Trikafta would stop them, but so far nothing. I was told there might be a "purge" from my lungs and intestines/colon, after starting Trikafta. The Colyte is basically Xlax on steroids to clean you out before you start Trikafta. Apparently some CF patients have had a bowel blockage happen after starting Trikafta because as it peels a lot of sticky mucus fecal material off your colon walls, it can create a blockage as it all "rushes for the exit" lol. Doctors words not mine.
Thank you so much for making these videos. My six-year-old has cystic fibrosis and these videos truly give me hope. Thanks again
Oh with this medication CF is not a huge worry anymore. More videos to come! the Progress is so awesome!
Hi. How your child ?
I am so happy for u Brian! 2021 is going to be a awesome year for you . Can't wait to see your improvements
This is super exciting! I'm all about some Trikafta Trials!
Hi Brian
I’m 43 and in the UK. I have been on Kaftrio ( trikafta ) for 14 months now and feel epic. I’ve increased my lung function by 30% and think nothing of pushing out 1000 miles a month on my bikes. Don’t get me wrong I wasn’t in bad shape anyway but as we know with this degenerative disease, it’s time we hold onto. Now the tides have turned and most of us I think in the CF world are rolling back the clock. Would love to hear how you are doing now re lung function and general life etc.
Wish you all the best from the other side of the CF family across the pond
I'm so happy for you!!
im going to get trikafta too in like 2 weeks !!
I'm starting trikafta tomorrow. Did you have to take the colyte before starting it? My Doctors seem conflicted? Not sure if it's 100% necessary ? ? ?
Congrats! Update on how you're doing? I have not heard of the "colyte" before. What is that?
@@Speakingill I have Delta F508 mutation x 2. For me, mucus plugs are the bane of my existence. I spend up to 5 hours a day trying to cough them up or blow them out my nose. Was really hoping the Trikafta would stop them, but so far nothing. I was told there might be a "purge" from my lungs and intestines/colon, after starting Trikafta. The Colyte is basically Xlax on steroids to clean you out before you start Trikafta. Apparently some CF patients have had a bowel blockage happen after starting Trikafta because as it peels a lot of sticky mucus fecal material off your colon walls, it can create a blockage as it all "rushes for the exit" lol. Doctors words not mine.
what is your lung function pre Trikafta ?
Aaaaaaghhhh! I can’t believe I forgot to include this. I will in the next video but before Trikafta it got up to 28% (21% 6 months before Trikafta)