Exercise help please

00transam

New member
i, I am new to reaching out about my cf but it it time for me to do so. Any help of ANY kind is welcome. I am a 38 yr old male with cf whose lungs are around 40%. My problem is that my doctors and I are really getting into it over exercise levels and oxygen use. They want me to stop pushing so hard(Ireally do push my limits) and start using oxygen. I vehemently disagree, I am twice the age of most cf people I see in hospital yet I am the only one that goes to physical therapy in workout clothes and really puts forth a workout.Everyone else just walks in street clothes, this goes for those on and off oxygen. There is no sweating going on no HARD breathing and they get real mad at me for doing so because my O2 levels don't match they're little charts. This is not how I was taught long ago(at same facility), i was tolod to push it or lose it. I have been busting my ass hard for at least 23yrs this way and now they are pushing me to stop and just accept a lazy non-challenging workout and oxygen. I tried they're workout after my last inpatient visit and I have seen the biggest 1 year drop in capacity ever! And now I am back inpatient again. I have gone back to my workout and won't workout with the therapists and have been feeling better. Any one else run into this problem?? What I say and can prove goes in one ear and out the other with them. Sorry this is so long but I am new to this and I am SO FRUSTRATED. Thank you.
 

00transam

New member
i, I am new to reaching out about my cf but it it time for me to do so. Any help of ANY kind is welcome. I am a 38 yr old male with cf whose lungs are around 40%. My problem is that my doctors and I are really getting into it over exercise levels and oxygen use. They want me to stop pushing so hard(Ireally do push my limits) and start using oxygen. I vehemently disagree, I am twice the age of most cf people I see in hospital yet I am the only one that goes to physical therapy in workout clothes and really puts forth a workout.Everyone else just walks in street clothes, this goes for those on and off oxygen. There is no sweating going on no HARD breathing and they get real mad at me for doing so because my O2 levels don't match they're little charts. This is not how I was taught long ago(at same facility), i was tolod to push it or lose it. I have been busting my ass hard for at least 23yrs this way and now they are pushing me to stop and just accept a lazy non-challenging workout and oxygen. I tried they're workout after my last inpatient visit and I have seen the biggest 1 year drop in capacity ever! And now I am back inpatient again. I have gone back to my workout and won't workout with the therapists and have been feeling better. Any one else run into this problem?? What I say and can prove goes in one ear and out the other with them. Sorry this is so long but I am new to this and I am SO FRUSTRATED. Thank you.
 

00transam

New member
i, I am new to reaching out about my cf but it it time for me to do so. Any help of ANY kind is welcome. I am a 38 yr old male with cf whose lungs are around 40%. My problem is that my doctors and I are really getting into it over exercise levels and oxygen use. They want me to stop pushing so hard(Ireally do push my limits) and start using oxygen. I vehemently disagree, I am twice the age of most cf people I see in hospital yet I am the only one that goes to physical therapy in workout clothes and really puts forth a workout.Everyone else just walks in street clothes, this goes for those on and off oxygen. There is no sweating going on no HARD breathing and they get real mad at me for doing so because my O2 levels don't match they're little charts. This is not how I was taught long ago(at same facility), i was tolod to push it or lose it. I have been busting my ass hard for at least 23yrs this way and now they are pushing me to stop and just accept a lazy non-challenging workout and oxygen. I tried they're workout after my last inpatient visit and I have seen the biggest 1 year drop in capacity ever! And now I am back inpatient again. I have gone back to my workout and won't workout with the therapists and have been feeling better. Any one else run into this problem?? What I say and can prove goes in one ear and out the other with them. Sorry this is so long but I am new to this and I am SO FRUSTRATED. Thank you.
 

FitForCF

New member
Hey there. I'm 41 and my cf clinic started a research study a few months back on this very subject. My doctors are on the aggressive side, so they like the idea of pushing it. I shocked them last March when my PFT's (pulmonary function test) went up. Then they went up again on my next visit. I started doing the P90X workout last Feb and haven't stopped. It is a full hour kick butt workout. It totally goes to the extreme and I do what I can do. This past summer I was keeping up with everyone of the dvd. Now this winter I've had colds and can't as much. But I do what I can and I can tell when I've had enough. I just became a coach for the P90X system to help others with CF to try and get the same kind of benefits I got.
As CFers we Have to keep our lungs moving, if not they will fill up with heavy junk and that's bad! Good luck and feel free to send me a private message if you want my website or just to chat.
 

FitForCF

New member
Hey there. I'm 41 and my cf clinic started a research study a few months back on this very subject. My doctors are on the aggressive side, so they like the idea of pushing it. I shocked them last March when my PFT's (pulmonary function test) went up. Then they went up again on my next visit. I started doing the P90X workout last Feb and haven't stopped. It is a full hour kick butt workout. It totally goes to the extreme and I do what I can do. This past summer I was keeping up with everyone of the dvd. Now this winter I've had colds and can't as much. But I do what I can and I can tell when I've had enough. I just became a coach for the P90X system to help others with CF to try and get the same kind of benefits I got.
As CFers we Have to keep our lungs moving, if not they will fill up with heavy junk and that's bad! Good luck and feel free to send me a private message if you want my website or just to chat.
 

FitForCF

New member
Hey there. I'm 41 and my cf clinic started a research study a few months back on this very subject. My doctors are on the aggressive side, so they like the idea of pushing it. I shocked them last March when my PFT's (pulmonary function test) went up. Then they went up again on my next visit. I started doing the P90X workout last Feb and haven't stopped. It is a full hour kick butt workout. It totally goes to the extreme and I do what I can do. This past summer I was keeping up with everyone of the dvd. Now this winter I've had colds and can't as much. But I do what I can and I can tell when I've had enough. I just became a coach for the P90X system to help others with CF to try and get the same kind of benefits I got.
<br />As CFers we Have to keep our lungs moving, if not they will fill up with heavy junk and that's bad! Good luck and feel free to send me a private message if you want my website or just to chat.
 

Twistofchaos

New member
Don't worry, sounds like you're doing the right thing. As CF'ers we need a healthy dose of common sense and the courage to disagree with our doctors as we tend to know our bodies and how it responds to stuff fairly well. I'm lucky enough to have found a CF center that atleast gets that right and knows treatment should be discussed in depth, well that or they're afraid of me by now. I dunno.

Myself I train at home, mostly strength training and push it to the maximum always. Do not see why I would bother otherwise, we need to get the most out of any energy we invest, and indeed feel I only get results that way. (the rest of the day is already moderately tiring on my body) And ofcourse an excellent agression reliever as well..

Indeed you often see people (not so much CF'ers) that go on O2 becomming less active when ofcourse with O2 they can be more active again. People tend to not be very hard on themselves, and neither are medical centers. (well they are but at the wrong times, place, temperatures and planet.)

My lungs are in the 30%'s and I train with an oxygen concentrator. Simply something I discussed with my doctor and physiotherapist and after some tests that was fine. I'm not yet on oxygen otherwise unless pretty sick.
I believe this is something far more not-yet-on-O2 CF'ers should opt for. Although the effect isn't huge it gives you a little bit extra room to push, one or two extra reps, etc. Which could matter quite a bit in the long run.

But I do not know how our hearts respond to such stress and I feel I'm maxing out quite often quite easily which is a little scary sometimes (close to lightsout after heavy sets. (giving it all on squatting, deadlifting, but those are pretty extreme anyway.) Not so much because of low saturations. (I have a saturation meter at home) but because of high heartrates.) so yeah.. maybe someone knowledgeable can expand on this?
 

Twistofchaos

New member
Don't worry, sounds like you're doing the right thing. As CF'ers we need a healthy dose of common sense and the courage to disagree with our doctors as we tend to know our bodies and how it responds to stuff fairly well. I'm lucky enough to have found a CF center that atleast gets that right and knows treatment should be discussed in depth, well that or they're afraid of me by now. I dunno.

Myself I train at home, mostly strength training and push it to the maximum always. Do not see why I would bother otherwise, we need to get the most out of any energy we invest, and indeed feel I only get results that way. (the rest of the day is already moderately tiring on my body) And ofcourse an excellent agression reliever as well..

Indeed you often see people (not so much CF'ers) that go on O2 becomming less active when ofcourse with O2 they can be more active again. People tend to not be very hard on themselves, and neither are medical centers. (well they are but at the wrong times, place, temperatures and planet.)

My lungs are in the 30%'s and I train with an oxygen concentrator. Simply something I discussed with my doctor and physiotherapist and after some tests that was fine. I'm not yet on oxygen otherwise unless pretty sick.
I believe this is something far more not-yet-on-O2 CF'ers should opt for. Although the effect isn't huge it gives you a little bit extra room to push, one or two extra reps, etc. Which could matter quite a bit in the long run.

But I do not know how our hearts respond to such stress and I feel I'm maxing out quite often quite easily which is a little scary sometimes (close to lightsout after heavy sets. (giving it all on squatting, deadlifting, but those are pretty extreme anyway.) Not so much because of low saturations. (I have a saturation meter at home) but because of high heartrates.) so yeah.. maybe someone knowledgeable can expand on this?
 

Twistofchaos

New member
Don't worry, sounds like you're doing the right thing. As CF'ers we need a healthy dose of common sense and the courage to disagree with our doctors as we tend to know our bodies and how it responds to stuff fairly well. I'm lucky enough to have found a CF center that atleast gets that right and knows treatment should be discussed in depth, well that or they're afraid of me by now. I dunno.
<br />
<br />Myself I train at home, mostly strength training and push it to the maximum always. Do not see why I would bother otherwise, we need to get the most out of any energy we invest, and indeed feel I only get results that way. (the rest of the day is already moderately tiring on my body) And ofcourse an excellent agression reliever as well..
<br />
<br />Indeed you often see people (not so much CF'ers) that go on O2 becomming less active when ofcourse with O2 they can be more active again. People tend to not be very hard on themselves, and neither are medical centers. (well they are but at the wrong times, place, temperatures and planet.)
<br />
<br />My lungs are in the 30%'s and I train with an oxygen concentrator. Simply something I discussed with my doctor and physiotherapist and after some tests that was fine. I'm not yet on oxygen otherwise unless pretty sick.
<br />I believe this is something far more not-yet-on-O2 CF'ers should opt for. Although the effect isn't huge it gives you a little bit extra room to push, one or two extra reps, etc. Which could matter quite a bit in the long run.
<br />
<br />But I do not know how our hearts respond to such stress and I feel I'm maxing out quite often quite easily which is a little scary sometimes (close to lightsout after heavy sets. (giving it all on squatting, deadlifting, but those are pretty extreme anyway.) Not so much because of low saturations. (I have a saturation meter at home) but because of high heartrates.) so yeah.. maybe someone knowledgeable can expand on this?
 

static

New member
Man where can I get the commitment you guys have to exercise.

When I was younger (and practically near-perfect lung function) I would push myself to the limit all the time during the routine Physical Education classes they require from grades 7-10 and again during my swimming, soccer, and water polo practices/matches. When we didn't win or didn't achieve the goals I wanted I was disappointment but never really gave up.

Now though there are times that I would rather sit in front of the computer than go to the gym. When their I want to push my limits but am not sure of how far I can actually go, and of course if I get a coughing fit going I usually go home as the staring isn't to my liking.

I guess what I am asking is where do you find your motivation when you know you will ever be as healthy as you once where. (Sorry in advance I did not mean to bring anyone down, just looking for some encouragement from people who know what I am going through and by the tone of this post are obviously mentally stronger than I at the moment).
 

static

New member
Man where can I get the commitment you guys have to exercise.

When I was younger (and practically near-perfect lung function) I would push myself to the limit all the time during the routine Physical Education classes they require from grades 7-10 and again during my swimming, soccer, and water polo practices/matches. When we didn't win or didn't achieve the goals I wanted I was disappointment but never really gave up.

Now though there are times that I would rather sit in front of the computer than go to the gym. When their I want to push my limits but am not sure of how far I can actually go, and of course if I get a coughing fit going I usually go home as the staring isn't to my liking.

I guess what I am asking is where do you find your motivation when you know you will ever be as healthy as you once where. (Sorry in advance I did not mean to bring anyone down, just looking for some encouragement from people who know what I am going through and by the tone of this post are obviously mentally stronger than I at the moment).
 

static

New member
Man where can I get the commitment you guys have to exercise.
<br />
<br />When I was younger (and practically near-perfect lung function) I would push myself to the limit all the time during the routine Physical Education classes they require from grades 7-10 and again during my swimming, soccer, and water polo practices/matches. When we didn't win or didn't achieve the goals I wanted I was disappointment but never really gave up.
<br />
<br />Now though there are times that I would rather sit in front of the computer than go to the gym. When their I want to push my limits but am not sure of how far I can actually go, and of course if I get a coughing fit going I usually go home as the staring isn't to my liking.
<br />
<br />I guess what I am asking is where do you find your motivation when you know you will ever be as healthy as you once where. (Sorry in advance I did not mean to bring anyone down, just looking for some encouragement from people who know what I am going through and by the tone of this post are obviously mentally stronger than I at the moment).
 

scanboyd

Member
I agree with you, good hard exercise is very important for CF folks. I did not have or take time to really exercise until I retired 6 yrs. ago. As a child I did not consider my self any different from other children. I did what other children did, all activity as well as Boy Scouts. Did the usual PE in high school, at times I noticed I was more short of breath than others but that did not stop me.
However since I have retired I have taken exercise more seriously. My present FEV1 is 31, I do a 16 min. grade of 4 for mile 2 miles on treadmill, I use O2 only for exercise on treadmill, my sats drop to 87 if I do not use O2, with O2 drop to 93, resting SATS 97-98. I monitor my heart rate, not to excede my maxium HR for my age, (220-63,present age,times 80%)= max. HR. of 125 or so for me, sometimes I kick it up to 130. If I did not use O2 it would be around 153-140. This is too much strain on the heart. I work out 3 times wk. I do a good walk unable to run due to fused ankle from old football injury.
Push exercise but use common sense!!
 

scanboyd

Member
I agree with you, good hard exercise is very important for CF folks. I did not have or take time to really exercise until I retired 6 yrs. ago. As a child I did not consider my self any different from other children. I did what other children did, all activity as well as Boy Scouts. Did the usual PE in high school, at times I noticed I was more short of breath than others but that did not stop me.
However since I have retired I have taken exercise more seriously. My present FEV1 is 31, I do a 16 min. grade of 4 for mile 2 miles on treadmill, I use O2 only for exercise on treadmill, my sats drop to 87 if I do not use O2, with O2 drop to 93, resting SATS 97-98. I monitor my heart rate, not to excede my maxium HR for my age, (220-63,present age,times 80%)= max. HR. of 125 or so for me, sometimes I kick it up to 130. If I did not use O2 it would be around 153-140. This is too much strain on the heart. I work out 3 times wk. I do a good walk unable to run due to fused ankle from old football injury.
Push exercise but use common sense!!
 

scanboyd

Member
I agree with you, good hard exercise is very important for CF folks. I did not have or take time to really exercise until I retired 6 yrs. ago. As a child I did not consider my self any different from other children. I did what other children did, all activity as well as Boy Scouts. Did the usual PE in high school, at times I noticed I was more short of breath than others but that did not stop me.
<br />However since I have retired I have taken exercise more seriously. My present FEV1 is 31, I do a 16 min. grade of 4 for mile 2 miles on treadmill, I use O2 only for exercise on treadmill, my sats drop to 87 if I do not use O2, with O2 drop to 93, resting SATS 97-98. I monitor my heart rate, not to excede my maxium HR for my age, (220-63,present age,times 80%)= max. HR. of 125 or so for me, sometimes I kick it up to 130. If I did not use O2 it would be around 153-140. This is too much strain on the heart. I work out 3 times wk. I do a good walk unable to run due to fused ankle from old football injury.
<br />Push exercise but use common sense!!
 

Printer

Active member
I am male 71 with CF. I have a BS in Business and I did my grad work in an MBA Program. What my education taught me is, what I don't know. I leave the Accounting to the CPAs, I leave the Law to the Lawyers and I leave the Financial Planning to the Financial Experts.

I leave my excercise planning to my CF Physical Therapist, the Medical decisions to my Doctors, etc. Now I have imput in every decision, business or health.

The key here is I KNOW WHAT I DON'T KNOW.

Bill
 

Printer

Active member
I am male 71 with CF. I have a BS in Business and I did my grad work in an MBA Program. What my education taught me is, what I don't know. I leave the Accounting to the CPAs, I leave the Law to the Lawyers and I leave the Financial Planning to the Financial Experts.

I leave my excercise planning to my CF Physical Therapist, the Medical decisions to my Doctors, etc. Now I have imput in every decision, business or health.

The key here is I KNOW WHAT I DON'T KNOW.

Bill
 

Printer

Active member
I am male 71 with CF. I have a BS in Business and I did my grad work in an MBA Program. What my education taught me is, what I don't know. I leave the Accounting to the CPAs, I leave the Law to the Lawyers and I leave the Financial Planning to the Financial Experts.
<br />
<br />I leave my excercise planning to my CF Physical Therapist, the Medical decisions to my Doctors, etc. Now I have imput in every decision, business or health.
<br />
<br />The key here is I KNOW WHAT I DON'T KNOW.
<br />
<br />Bill
 

tesorotiffa

New member
I say you know your body better than they do! Work out the way you like to, and when you feel like maybe you're pushing your body a little too hard, cut back a bit. I know the docs are out for our best interest, but ultimately things are up to us! My doctor has gotten in the habit of saying "I don't know what you're doing, but whatever it is... keep doing it".
 

tesorotiffa

New member
I say you know your body better than they do! Work out the way you like to, and when you feel like maybe you're pushing your body a little too hard, cut back a bit. I know the docs are out for our best interest, but ultimately things are up to us! My doctor has gotten in the habit of saying "I don't know what you're doing, but whatever it is... keep doing it".
 
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