Several answers:
Psychologically: When I realized no matter what, no matter what I do, it does not fully affect when I become worm food. Meaning, I've had very close friends who didn't have CF and did everything right and then they get killed in a car accident and weren't even drinking...I have countless examples of this aspect, in different ways. I try not to think "When it's your time, it's your time", but the older I get the more I think that way...Regardless what we do.
Mentally and physically: When I realized in general, no one besides my direct family really gives a ***** about me. It's all up to me to help myself out as much as possible. No matter how many internet "We wish you the best" digital representations, none of it really matters. Only *I* can make my situation better or worse.
CF wise: I used to be the biggest "My doctor knows whats up" type guy. I only felt modern medicine knew 100% and were the pinnacle of knowledge for my disease. After blindly stumbling upon a giant fall in my health, and cynically looking for alternative aspects, I found out I was wrong. VERY wrong. I found tons of things out there that helped my body, in this fight against CF. I started to adopt these different things, some worked very well, some not so much. I constantly see posts from people like "Well so and so is really bad off, the doctors say (fill in the blanks), but he/she is going downhill fast. I don't know what to do". And then someone else who has had benefit from a non conventional treatment informs them of what worked for them, and they get "Yeah well i'm not sure about that, I don't want to cause problems". Meanwhile, that patient slowly degrades until they get a TX or die (or both).
To me, it is sad the parents/guardians wait till the very last point, and usually the person dies, and the parent/guardian never gave something else a chance. And i'm not saying it's wrong for someone to be apprehensive, and to be honest, if you wait till your loved ones PFT's are 30%, don't expect many miracles. But if you fully let either alternative or conventional treatments take care of you, you will probably have problems. Let one take care of the obvious, and let the other (those that make sense) give a shot at it.
Psychologically: When I realized no matter what, no matter what I do, it does not fully affect when I become worm food. Meaning, I've had very close friends who didn't have CF and did everything right and then they get killed in a car accident and weren't even drinking...I have countless examples of this aspect, in different ways. I try not to think "When it's your time, it's your time", but the older I get the more I think that way...Regardless what we do.
Mentally and physically: When I realized in general, no one besides my direct family really gives a ***** about me. It's all up to me to help myself out as much as possible. No matter how many internet "We wish you the best" digital representations, none of it really matters. Only *I* can make my situation better or worse.
CF wise: I used to be the biggest "My doctor knows whats up" type guy. I only felt modern medicine knew 100% and were the pinnacle of knowledge for my disease. After blindly stumbling upon a giant fall in my health, and cynically looking for alternative aspects, I found out I was wrong. VERY wrong. I found tons of things out there that helped my body, in this fight against CF. I started to adopt these different things, some worked very well, some not so much. I constantly see posts from people like "Well so and so is really bad off, the doctors say (fill in the blanks), but he/she is going downhill fast. I don't know what to do". And then someone else who has had benefit from a non conventional treatment informs them of what worked for them, and they get "Yeah well i'm not sure about that, I don't want to cause problems". Meanwhile, that patient slowly degrades until they get a TX or die (or both).
To me, it is sad the parents/guardians wait till the very last point, and usually the person dies, and the parent/guardian never gave something else a chance. And i'm not saying it's wrong for someone to be apprehensive, and to be honest, if you wait till your loved ones PFT's are 30%, don't expect many miracles. But if you fully let either alternative or conventional treatments take care of you, you will probably have problems. Let one take care of the obvious, and let the other (those that make sense) give a shot at it.