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Hiya, It's relevant if you want to figure out how many transplants are actually done on people with CF. I agree ofcourse that the whole transplant system has to be hugely improved, and mainly that donorship has to be the default for everyone till one objects and some specific exceptions...

Hoi Vera, Those numbers aren't set in stone here. It depends on your decline and general health. They make sense though as a general guideline. Because getting a transplant is rather risky in itself and then there's the risk of rejection and further complications. Something you only want to...

Yep shoulder dislocates are a great way to increase mobility, stretch and to prevent/improve problems with the shoulders. Part of my warmup ever since my shoulders started to give me problems and they've taken most of it away. Another good stretch is to place both hands on a wall at face...

Sadly, it's as much of a neurological pattern as it is something you can fix with your muscles. Many years of weight training and a stronger back sadly hasn't really or directly improved my slouch/kyphosis. (Infact an overdeveloped trapezius at the back makes it optically worse so ironically I...

CF treatments are like strange underwear. It's hard to explain to strangers. CF treatments are good for the goose but the gander takes off quacking as soon as the nebulizer goes on. CF treatments are scary because someone's bound to think of shooting us all into space where it's easier to...

Haha yes complete with: "That science, facts and math of yours well that's like, just your opinion man."

No, not well said at all. You have a 100% lungfunction at 33 without having to do jack for it? Good for you, let's encourage this kid not to take any as well and spin the Russian roulette to see if this one is as lucky. You can't just go by lungfunction at 18 years old. Mine was pretty good...

Past my mid 20's it seemed for me too that my skin became less tolerable for the sun and/or buildup of salt and leaving it there. Indeed rash and little red bumps. Putting on some sort of basic cream/lotion at the beginning of the day if you aren't going to be able to wash it off seems to do...

Such fears, and very much wanting to be normal (marriage, 2.3 kids, carreer, many friends, the whole thing) comes with the age you are in. Ok some people never grow out of that but.. for others it just gets a little easier being different when they get older. Mainly because you get to know the...

Yeah, most of us go through a rebelling against CF fase one way or the other. Especially around your age where you stop being a kid and certain realities are starting to hit home. So did I, and payed heavily for it. So when I read a post like yours I can only think: IDIOT. But like the...

No, it's ok (maybe even better) to take our enzymes slightly early. But I find it easiest to just take them when I start to eat. Nothing really happens when taking too much enzymes/too little food. The body gets rid of it mostly unnoticed.

Hi there, It's fine as long as you take your time to get there. Learn as much about nutrition and weightlifting as you can. Also because you are still in puberty and you want to take it slightly easy while your body is still under development, both with hard dieting and going all out with...

Either way, most important is to get it out of the lungs so as long as she's doing that. Swallowing large amounts of mucus causes nausea and other digestive issues. But we swallow large amounts comming from the nose throughout the day without realising it so that's kind of double. However the...

Hi there, None of us can tell from here if you have CF or not so as you are worried you could go back and request genetic testing to be done. Testing has improved over time and it can now tell you if you have two CF mutations (CF) , one (carrier) or none at all. Goodluck in your search!

Hi there and welcome! Sorry to hear your health has been in decline. But well done on living on your own! Such big lungbleeds while ugly and scary in and of itself doesn't have to mean something significant. Well it could be, but your lungs are exchanging gasses from the air with your blood...

You receive polite helpful answers to polite helpful questions. Condolences and commiseration for the loss of your child.

The hell.. That's not even a question. Are you either.. Planning to have a child and want to test beforehand if you are carriers? Expecting one and want to have the baby tested before it is born? Had a child with CF in the past (??) and want to be tested..for what? Currently have a child...

It is possibly entering a new stage in his CF. Could be caused by anything, at 13 he's entering puberty etc. Some people with CF will just always have a cough. Myself I've always had a cough from as young as I can remember even when I was mostly clear and healthy. Conversely the ability to...

It's possible that strengthening the pelvic floor muscles helps peeing control during coughing. With so called Kegel exercises. Can't say for sure because I'm a man and things seem to work slightly different. But they're easy to do at the same time with vacuum exercises and so this is what I...

Awesome! Serious dedication to go through all this and a hospital stay just to make an epic Harlem shake video. Now hope he gets well and out of there soon. It inspired me to try pull a latex glove over my head right now. Not as easy as it seems but once it's there it feels good.