Hope all goes good for you, and you keep well, you're an inspiration to us all

Love your videos! Hope your well x

Hope u get it

@damiandunlop4407

3 жыл бұрын

Was diagnosed in 2016 an should have been having treatment long time before I hope all works out for u and your docs actually do what they are supposed to

Is a transplat as bad as it souds i have to get one and im kinda scared

Please put subtitles in the videos, I'm Brazilian and I want to help people with cystic fibrosis, it would be great to be able to send your videos to bring hope to those with this disease. Please help me to help other people, thank you!

Charles. I am 12 years old. my name is trinity Greenwood and I have c.f.. I have not been in the hospital for 2 years now. I love being there but this is amazing for the time distance. I love you thanks.

Thanks so much for sharing! I am from the US but spent a few months in the UK recently- they mentioned "the bird" machine, and I was really interested in using it but never got the chance. Do you know if it's the same as IPV? It's cool to hear that it enabled you to feel like you took a real big breath in! Keep on keeping on as you await for your call- I don't know from personal experience, but from watching my sister await her call...the waiting is exhausting... you got this!

@CharlesMichaelDuke

8 жыл бұрын

+The Frey Life Hey Guys! Love your videos by the way! :) Ummm, I don't know what the IPV is, but having just googled it, I don't think its like the bird at all. :/ The bird blows just oxygen which it takes from an oxygen tank, (so can only be used in hospital) where as the IPV gives off an aerosol? and the bird doesn't incorporate percussion either. The bird is more a supe'd up version of the nipi clearway, or NIV machine? I don't know if you have those over there... However the main difference is when you breathe out the bird shuts off completely, whereas the NIV and Nippi still deliver a small amount of pressure for you to blow against. Hope this helps!

@thefreylife

8 жыл бұрын

Sounds interesting! I'd be interested in trying them out! Thanks for explaining what all of those cool machines are! well...I guess you know you are a CF patient when...you think respiratory machines are "cool". haha. Have you heard of The Frequencer? It was created by a CF patient who noticed his lungs felt better after he was at a loud concert...so they created a machine that sends sound waves into your lungs. Sounds cool to me!

@CharlesMichaelDuke

8 жыл бұрын

The Frey Life haha so true! I think I've heard of something that does something like that! would be pretty awesome to give it a go! I used to have a massive sub woofer in the boot of my car when i was younger, and when i sat in the back seats with it on loud, i could feel things moving around in my chest! Hope you're keeping well x

@thefreylife

8 жыл бұрын

Oh that's so cool that the subwoofer helped with airway clearance! haha! That's what CF treatment will be in the future...BLASTING music in our room :)

@CharlesMichaelDuke

8 жыл бұрын

The Frey Life I cannot wait for that day! haha

love the vids and hope you're keeping well, if you don't mind me asking, what is your lung function percentage?

@CharlesMichaelDuke

8 жыл бұрын

+Jay Doran Hey Jay, Really sorry, but i tend to keep my LF % to myself, i feel sometimes people can get hung up on the numbers, and for me its more about how you feel... :) Hope you're doing okay x

@jaydoran1997

8 жыл бұрын

+Charles Michael Duke No I understand, I suppose it's a good way to look at things!! stay strong and keep doing what you're doing man!! 👊

@nicolafigini784

8 жыл бұрын

Hi there, Charles. You've posted what your lung function was a year ago, in the notes accompanying the first video that appears on your home page.

@CharlesMichaelDuke

8 жыл бұрын

Yeah the Decision to keep it to myself if one i think i made at the beginning of the year, but thanks for letting me know x

@jonjames3647

8 жыл бұрын

He wont say what his lung function is, because there over 40% . He was listed when they went low, but they went back up.so why hes still listed i dont know. But if your in the list, you pretty much need oxyen all the time. Personally, id wait till i really needed new lungs.

Better watch it Charlie, Matilda has a bit of a jealousy problem😉

You dont need a transplant yet. Your fev1 is around 40%