KAFTRIO/TRIKAFTA - WEEK 1 The Purge To Super Human
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- เผยแพร่เมื่อ 17 ก.ย. 2020
- On the 11th September 2020 I started the Cystic Fibrosis CFTR modulator drug Kaftrio/Trikafta. This video shares what my experiences have been over the first week and how it has completely changed my life!
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Hopefully starting trikafta this week! I went through a similar experience when I started nebulising pulmozyme ! Was coughing up so much for the first week !
I've just taken my first dose 2hrs ago waiting for something to happen! It's exciting and scary!
How did it go? I'll be starting mine in a few months
@@jencreegan2439 Sorry I only just saw this. It has been completely life changing. I've not had a hospital admission since starting it, my lung function has gone up from about 55% and now settled at a good level (for me thats between 70-75%). I'm able to work without disruptions and am barely coughing in my day to day life. I don't have to do nearly as much physio or nebulisers but I still take all my tablets all the time and if I get a general illness then I do start to do physio again but I bounce back from the illness no problems! My weight has settled at a good number for me which is about 71kg. So it really has been life changing.
@@lucycopsey6439 that's amazing! Thanks so much for sharing :)
I hope things are continuing to be good for you. I’m 49 and tried Trikafta on and off 4 times before body could take the side effects. But taking breathing treatments and Trikafta not seeing a difference. And my workouts are awful, worst ever, and it’s like a need my albuterol more than ever. Frustrated and emailing my CF team frequently. Also, never had a purge just ongoing daily slimmy sputum daily . Any worthwhile advice I’d appreciate
Fantastic this drug is mental i can't wait to start it my self hmm but giving up Haribo and Chinese that would deffo not be a compromise for me haha......looking forward to hear updates....
Hey Dan, it is completely mental! Yep disappointed about the chinese and haribo... maybe my new, improved mutated taste buds will start to like them soon?! I'll keep you posted with any updates in the next few weeks.
Can't hear you