My advice for teenagers

[Oneof65]

I'm 28 with the cf. I'm not currently on the transplant list but soon. My main advice is to...<div><br></div><div>DO YOUR TREATMENTS!!!!!</div><div><br></div><div>yes they are a pain, yes they are annoying, yes they are long, yes you would rather be doing other things....</div><div><br></div><div>BUT</div><div><br></div><div>You don't realize the long term consequences of not doing them. </div><div><br></div><div>Just ask yourself....</div><div><br></div><div>How soon do you want be walking around with a cannula giving you extra oxygen?</div><div><br></div><div>Please feel free to message me about any questions or comments regarding things I have gone through or are going through, you guys aren't alone, we have all been there.</div><div><br></div><div></div>

 

[Oneof65]

I'm 28 with the cf. I'm not currently on the transplant list but soon. My main advice is to...<br>DO YOUR TREATMENTS!!!!!<br>yes they are a pain, yes they are annoying, yes they are long, yes you would rather be doing other things....<br>BUT<br>You don't realize the long term consequences of not doing them.<br>Just ask yourself....<br>How soon do you want be walking around with a cannula giving you extra oxygen?<br>Please feel free to message me about any questions or comments regarding things I have gone through or are going through, you guys aren't alone, we have all been there.<br>

 

[Oneof65]

I'm 28 with the cf. I'm not currently on the transplant list but soon. My main advice is to...<br>DO YOUR TREATMENTS!!!!!<br>yes they are a pain, yes they are annoying, yes they are long, yes you would rather be doing other things....<br>BUT<br>You don't realize the long term consequences of not doing them.<br>Just ask yourself....<br>How soon do you want be walking around with a cannula giving you extra oxygen?<br>Please feel free to message me about any questions or comments regarding things I have gone through or are going through, you guys aren't alone, we have all been there.<br>

 

[Havoc]

My advice would be to stay active. Treatments are important, but when you can replace CPT with vigorous exercise for airway clearance, that is certainly preferable. I am 30, my FEV1 is over 100% predicted and I don't do CPT. Rather, I exercise as often as I can. I imagine that some of my good health is pure luck, but I don't discount the fact that I have been very active all of my life.

I think some people get a bit overzealous with their treatment regimen. Sure they might do airway clearance religiously, but sitting around wearing the vest is nowhere near as good as getting out there and exercising. Of course, some people cannot tolerate vigorous exercise and have no other recourse. If you are one of the lucky ones who can, don't ever stop.

 

[Havoc]

My advice would be to stay active. Treatments are important, but when you can replace CPT with vigorous exercise for airway clearance, that is certainly preferable. I am 30, my FEV1 is over 100% predicted and I don't do CPT. Rather, I exercise as often as I can. I imagine that some of my good health is pure luck, but I don't discount the fact that I have been very active all of my life.

I think some people get a bit overzealous with their treatment regimen. Sure they might do airway clearance religiously, but sitting around wearing the vest is nowhere near as good as getting out there and exercising. Of course, some people cannot tolerate vigorous exercise and have no other recourse. If you are one of the lucky ones who can, don't ever stop.

 

[Havoc]

My advice would be to stay active. Treatments are important, but when you can replace CPT with vigorous exercise for airway clearance, that is certainly preferable. I am 30, my FEV1 is over 100% predicted and I don't do CPT. Rather, I exercise as often as I can. I imagine that some of my good health is pure luck, but I don't discount the fact that I have been very active all of my life.
<br />
<br />I think some people get a bit overzealous with their treatment regimen. Sure they might do airway clearance religiously, but sitting around wearing the vest is nowhere near as good as getting out there and exercising. Of course, some people cannot tolerate vigorous exercise and have no other recourse. If you are one of the lucky ones who can, don't ever stop.

 

[imported_Momto2]

Yup, gotta second folks. Be compliant with your treatment protocol, unless you have a very valid reason not to be, then discuss that with your doc and figure out what will work for you.

AND EXERCISE. AEROBIC. EVERY DAY.

cant emphasize this enough.

 

[imported_Momto2]

Yup, gotta second folks. Be compliant with your treatment protocol, unless you have a very valid reason not to be, then discuss that with your doc and figure out what will work for you.

AND EXERCISE. AEROBIC. EVERY DAY.

cant emphasize this enough.

 

[imported_Momto2]

Yup, gotta second folks. Be compliant with your treatment protocol, unless you have a very valid reason not to be, then discuss that with your doc and figure out what will work for you.
<br />
<br />AND EXERCISE. AEROBIC. EVERY DAY.
<br />
<br />cant emphasize this enough.

 

[Oneof65]

Havoc, you are correct that exercise is the top thing to do to stay healthy. Although like you mentioned, you are very lucky you can be so active, most cf patients cannot be. But every little bit helps!

 

[Oneof65]

Havoc, you are correct that exercise is the top thing to do to stay healthy. Although like you mentioned, you are very lucky you can be so active, most cf patients cannot be. But every little bit helps!

 

[Oneof65]

Havoc, you are correct that exercise is the top thing to do to stay healthy. Although like you mentioned, you are very lucky you can be so active, most cf patients cannot be. But every little bit helps!

 

[Havoc]

Yeah, I really feel badly for those who can't. That's why I encourage parents to start their kids early when they have their best health. Even then it's not a guarantee that they will remain that way. CF is a B***H

 

[Havoc]

Yeah, I really feel badly for those who can't. That's why I encourage parents to start their kids early when they have their best health. Even then it's not a guarantee that they will remain that way. CF is a B***H

 

[Havoc]

Yeah, I really feel badly for those who can't. That's why I encourage parents to start their kids early when they have their best health. Even then it's not a guarantee that they will remain that way. CF is a B***H

 

[imported_Momto2]

Jonathan, As a kid, I used to run and run and run- even trained a few marathon distances at age 10. Raced a few times at shorter distances (my personal best was 15:32 for 2.5 miles, age 9). I am positive that this aspect of my life is what has gotten me so far. Got back into it a couple of years ago after I had to give up professional riding/training. Its a struggle most days, but there is such an overall improvement in lung function, energy, sleep, etc that I keep plugging away (and I just love to run!) : ) Last summer I raced a 5K and was 12th in my division. OK, not superlative, but at least I wasnt last! Besides, I gotta keep up the kiddos, they are both competitive gymnasts.........

 

[imported_Momto2]

Jonathan, As a kid, I used to run and run and run- even trained a few marathon distances at age 10. Raced a few times at shorter distances (my personal best was 15:32 for 2.5 miles, age 9). I am positive that this aspect of my life is what has gotten me so far. Got back into it a couple of years ago after I had to give up professional riding/training. Its a struggle most days, but there is such an overall improvement in lung function, energy, sleep, etc that I keep plugging away (and I just love to run!) : ) Last summer I raced a 5K and was 12th in my division. OK, not superlative, but at least I wasnt last! Besides, I gotta keep up the kiddos, they are both competitive gymnasts.........

 

[imported_Momto2]

Jonathan, As a kid, I used to run and run and run- even trained a few marathon distances at age 10. Raced a few times at shorter distances (my personal best was 15:32 for 2.5 miles, age 9). I am positive that this aspect of my life is what has gotten me so far. Got back into it a couple of years ago after I had to give up professional riding/training. Its a struggle most days, but there is such an overall improvement in lung function, energy, sleep, etc that I keep plugging away (and I just love to run!) : ) Last summer I raced a 5K and was 12th in my division. OK, not superlative, but at least I wasnt last! Besides, I gotta keep up the kiddos, they are both competitive gymnasts.........

 

[Havoc]

Yup, As a kid I was in gymnastics (actually all the way through college). I also swam very often in the summers. Even to this day I walk or bike instead of getting in the car. I am unfortunately too old for gymnastics.

Even for the people who can't do gymnastics, walking to the market, or taking the stairs helps. It's just a matter of breaking the habit of sitting around all the time (admittedly hard to do when you don't feel well). The earlier you break this habit the better, so you guys in your young teens take a lesson for us old folks.

I'm a big computer nerd and I will sit on the computer and make music, edit photos, design web pages etc. for hours. I have to force myself to take a break and go for a bike ride or something. Your future health might depend on breaking a few bad habits

 

[Havoc]

Yup, As a kid I was in gymnastics (actually all the way through college). I also swam very often in the summers. Even to this day I walk or bike instead of getting in the car. I am unfortunately too old for gymnastics.

Even for the people who can't do gymnastics, walking to the market, or taking the stairs helps. It's just a matter of breaking the habit of sitting around all the time (admittedly hard to do when you don't feel well). The earlier you break this habit the better, so you guys in your young teens take a lesson for us old folks.

I'm a big computer nerd and I will sit on the computer and make music, edit photos, design web pages etc. for hours. I have to force myself to take a break and go for a bike ride or something. Your future health might depend on breaking a few bad habits