Appreciate the well wishes guys- it’s a revolutionary drug that I’m so grateful for. I know people hear about donations & wonder where the money goes or how it helps, but this literally helped me as u can see- so if any of u have ever donated or shared the vid or maybe even mentioned cf to anyone through conversation... THANK U, I appreciate y’all helping the cause- you’re literally saving my life- y’all are a vibe.5 the world needs that energy🙏🙏
I did not know that you had cystic fibrosis and I am amazed to hear that. You are a soldier. I once knew a CF sufferer and it is a very debilitating disease, so may God bless you Matt. All my warmest brotherly hugs.
Congratulations on your new treatment. I like how you live your life and go all out in spite of the CF. Love seeing how you don’t let it control your life. Thanks for such a great vlog
YAY! I AM SOOO HAPPY FOR YOU!! You inspire me so much, when watching you blow into the breathing tube I felt out of breath (I still do!) I think your lung function is better than mine is. I'm so happy and grateful you are doing well and you can help spread awareness.
I was three of your videos the first one was the Florida one moving from LAX to Florida 2nd one was your break up that made me cry because I've been in that same situation the 3rd one was the cystic fibrosis video and how it helped you I know a few people with that disease they are older and I also shared the video I subscribed to your Channel on October 18th 2020 Miss Vernell
I saw that the cost of this medication is over $300K per year! Does the CF Foundation pay for that? I can’t imagine a medication that cost the same as buying a new car every single month! I’m so happy for you and I hope the cost is covered somehow. I WILL be donating to the CF Foundation.
If you don't have insurance, it's dang near impossible to get this drug. There is a company called Vertex that helps with patient assistance. Even so, some insurance providers won't approve the drug. Doctors have to send in appeal after appeal. I've been on it since mid-December. Thank God!
I had pneumonia, and needed to go in the hospital, I had been waiting to receive Trikafta for a couple months (long story there). I received Trikafta on a Friday morning. On Monday, my lungs were clear, my infection was gone, and I felt incredible. That was February of 2020. I have not been in the hospital since. I got back to working out 5 days a week (weights and jujutsu), and working full time again. At 38, the last 3 years have been the best years of my life. I rarely cough, when I get sick, I'm a little sick for a few days, and then it goes away. Trikafta and Creon are the only medications I take now.
I really felt that excitement too when this guy got his lungs working better than before.. Well Too bad im one of the ppl who cant afford this new drug..
so what does this mean as far as cf? could it potentially cure your cf or does it just improve lung function? also i get that 126% is an improvement from 110% but if you're already at 100% lung function then i guess i don't understand the issue?
No it doesn’t cure it you have to take it daily, basically it just thins the mucus in CF sufferers bodies to thin it like a person without CF so it doesn’t clog up their lungs and digestive system as much. The higher your lung function is in CF the better because if they get a bad flu is can significantly drop their lung function so it’s fantastic his is so high because if he gets sick and it drops it won’t drop too low to need hospitalisation. That’s at least my very basic understanding, my 10 month Old has CF so hoping she can take this drug when she’s 6 (which is the age it’s approved to at the moment) or earlier which will hopefully stop CF from causing her damage but she will need to take it every day for the rest of her life until (hopefully) they find a genetic cure.
