Exercise Tolerance

J

jipleary

Guest
Hi my name is Dan. I was recently referred to the transplant team and I'm getting evaluated next week.

I saw the CF podcast and two patients stood out. First, it shows Jerry Cahill exercising. He's riding a bike and out on the track running and jumping and stretching ect. The second profile is of a young man who brought his FEV from about 30% to 50% just by swimming. Both of these individuals are on the transplant list.

I might go on the list (after evaluation) and I can barely walk a block before I have to stop and catch my breath. My question is, how can these two exercise so much! If I got on a bike I wouldn't last a minute and last time I swam one length of a pool I could feel the artery in my groin pumping cause mt heart was going so fast.

are these 2 unique cases? or am I just babying myself and really I can exercise a whole lot more. What's your exercise tolerance? oh and my FEV is about %20.
 
J

jipleary

Guest
Hi my name is Dan. I was recently referred to the transplant team and I'm getting evaluated next week.

I saw the CF podcast and two patients stood out. First, it shows Jerry Cahill exercising. He's riding a bike and out on the track running and jumping and stretching ect. The second profile is of a young man who brought his FEV from about 30% to 50% just by swimming. Both of these individuals are on the transplant list.

I might go on the list (after evaluation) and I can barely walk a block before I have to stop and catch my breath. My question is, how can these two exercise so much! If I got on a bike I wouldn't last a minute and last time I swam one length of a pool I could feel the artery in my groin pumping cause mt heart was going so fast.

are these 2 unique cases? or am I just babying myself and really I can exercise a whole lot more. What's your exercise tolerance? oh and my FEV is about %20.
 
J

jipleary

Guest
Hi my name is Dan. I was recently referred to the transplant team and I'm getting evaluated next week.
<br />
<br />I saw the CF podcast and two patients stood out. First, it shows Jerry Cahill exercising. He's riding a bike and out on the track running and jumping and stretching ect. The second profile is of a young man who brought his FEV from about 30% to 50% just by swimming. Both of these individuals are on the transplant list.
<br />
<br />I might go on the list (after evaluation) and I can barely walk a block before I have to stop and catch my breath. My question is, how can these two exercise so much! If I got on a bike I wouldn't last a minute and last time I swam one length of a pool I could feel the artery in my groin pumping cause mt heart was going so fast.
<br />
<br />are these 2 unique cases? or am I just babying myself and really I can exercise a whole lot more. What's your exercise tolerance? oh and my FEV is about %20.
 
M

mag6125

New member
I'm currently listed with an fev1 of about 22% and I have next to no exercise tolerance, I can't even walk around the grocery store anymore. It's very typical to have low tolerance but the docs will tell you the most important thing you can do is try to exercise as much as you can to be the best shape going into surgery. I have my oxygen concentrator next to my stationary bike so I can wear it while on the bike and web if I can only do 5 mins at a time it's better than not doing anything. So just try to do what you can and that's really all the docs expect as far as exercise goes.
 
M

mag6125

New member
I'm currently listed with an fev1 of about 22% and I have next to no exercise tolerance, I can't even walk around the grocery store anymore. It's very typical to have low tolerance but the docs will tell you the most important thing you can do is try to exercise as much as you can to be the best shape going into surgery. I have my oxygen concentrator next to my stationary bike so I can wear it while on the bike and web if I can only do 5 mins at a time it's better than not doing anything. So just try to do what you can and that's really all the docs expect as far as exercise goes.
 
M

mag6125

New member
I'm currently listed with an fev1 of about 22% and I have next to no exercise tolerance, I can't even walk around the grocery store anymore. It's very typical to have low tolerance but the docs will tell you the most important thing you can do is try to exercise as much as you can to be the best shape going into surgery. I have my oxygen concentrator next to my stationary bike so I can wear it while on the bike and web if I can only do 5 mins at a time it's better than not doing anything. So just try to do what you can and that's really all the docs expect as far as exercise goes.
 
E

ej0820

New member
I've wondered this as well. I've only recently started exercising and feel like it's pointless because of how little I can actually do. I used to be able to do so much more!!!

About the guy that increased his numbers from 30%-50%...how does that happen? I was under the impression that increasing lung capacity like that was nearly impossible. Maybe it depends on the damage that's there? It makes me wonder if/how I can get myself there. My numbers are in the 30s. Are there stories like these from other CFers, where they've been able to drastically improve lung function with exercise?

great post!
 
E

ej0820

New member
I've wondered this as well. I've only recently started exercising and feel like it's pointless because of how little I can actually do. I used to be able to do so much more!!!

About the guy that increased his numbers from 30%-50%...how does that happen? I was under the impression that increasing lung capacity like that was nearly impossible. Maybe it depends on the damage that's there? It makes me wonder if/how I can get myself there. My numbers are in the 30s. Are there stories like these from other CFers, where they've been able to drastically improve lung function with exercise?

great post!
 
E

ej0820

New member
I've wondered this as well. I've only recently started exercising and feel like it's pointless because of how little I can actually do. I used to be able to do so much more!!!
<br />
<br />About the guy that increased his numbers from 30%-50%...how does that happen? I was under the impression that increasing lung capacity like that was nearly impossible. Maybe it depends on the damage that's there? It makes me wonder if/how I can get myself there. My numbers are in the 30s. Are there stories like these from other CFers, where they've been able to drastically improve lung function with exercise?
<br />
<br />great post!
 
J

jipleary

Guest
Thanks for the info. Here's the link about the swimmer.

"Chad took his FEV1's from 29% to 58% through the power of swimming."
<a target=_blank class=ftalternatingbarlinklarge href="http://www.jerrycahill.com/episode_0079_chad_brown_believes_in_laps_for_life_with_cystic_fibrosis">http://www.jerrycahill.com/epi...e_with_cystic_fibrosis</a>
 
J

jipleary

Guest
Thanks for the info. Here's the link about the swimmer.

"Chad took his FEV1's from 29% to 58% through the power of swimming."
<a target=_blank class=ftalternatingbarlinklarge href="http://www.jerrycahill.com/episode_0079_chad_brown_believes_in_laps_for_life_with_cystic_fibrosis">http://www.jerrycahill.com/epi...e_with_cystic_fibrosis</a>
 
J

jipleary

Guest
Thanks for the info. Here's the link about the swimmer.
<br />
<br />"Chad took his FEV1's from 29% to 58% through the power of swimming."
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.jerrycahill.com/episode_0079_chad_brown_believes_in_laps_for_life_with_cystic_fibrosis">http://www.jerrycahill.com/epi...e_with_cystic_fibrosis</a>
 
B

BigAir

Guest
Hi everyone
My name is Jerry and that is me jogging/biking...
My FEV's are 27% and I am listed for transplant
Ibjog with oxygen at 3 - 5 liters and wear a wrist Oximeter to
Make sue my SATS stay above 90%

You need to start on SLOWLY and build up and you will see results over time

Just BELIEVE!!!!
 
B

BigAir

Guest
Hi everyone
My name is Jerry and that is me jogging/biking...
My FEV's are 27% and I am listed for transplant
Ibjog with oxygen at 3 - 5 liters and wear a wrist Oximeter to
Make sue my SATS stay above 90%

You need to start on SLOWLY and build up and you will see results over time

Just BELIEVE!!!!
 
B

BigAir

Guest
Hi everyone
<br />My name is Jerry and that is me jogging/biking...
<br />My FEV's are 27% and I am listed for transplant
<br />Ibjog with oxygen at 3 - 5 liters and wear a wrist Oximeter to
<br />Make sue my SATS stay above 90%
<br />
<br />You need to start on SLOWLY and build up and you will see results over time
<br />
<br />Just BELIEVE!!!!
<br />
 
L

loredana

New member
Hi Dan -

I have just started exercising again recently after a hiatus. I am a 48 y/o with CF. My FEV usually runs in the low 30s. I finished pulmonary rehab (a four month process for me) and am now exercising on my own. I'm nowhere near fitness wise where Jerry is but I am aspiring to that, FEV be darned!! I second his comment about believing you can do it. Even if it is only little spurts of movement it is better than none and you WILL gradually build up your exercise tolerance. Best of luck to you.

Loredana
 
L

loredana

New member
Hi Dan -

I have just started exercising again recently after a hiatus. I am a 48 y/o with CF. My FEV usually runs in the low 30s. I finished pulmonary rehab (a four month process for me) and am now exercising on my own. I'm nowhere near fitness wise where Jerry is but I am aspiring to that, FEV be darned!! I second his comment about believing you can do it. Even if it is only little spurts of movement it is better than none and you WILL gradually build up your exercise tolerance. Best of luck to you.

Loredana
 
L

loredana

New member
Hi Dan -
<br />
<br />I have just started exercising again recently after a hiatus. I am a 48 y/o with CF. My FEV usually runs in the low 30s. I finished pulmonary rehab (a four month process for me) and am now exercising on my own. I'm nowhere near fitness wise where Jerry is but I am aspiring to that, FEV be darned!! I second his comment about believing you can do it. Even if it is only little spurts of movement it is better than none and you WILL gradually build up your exercise tolerance. Best of luck to you.
<br />
<br />Loredana
 
B

bharison

Member
Hello to all,

I am 64 years old and only officially diagnosed with CF last year. For 30 + years I have swum laps 3X A Week for about 40 minutes. This is why I am still on this planet earth. Don't give up swim, run, bike whatever it takes. My FEV hovers around 50 it has been as low as 30. My sister died from CF 40 years ago at age 21. I have struggled with lung issues all these years but the docs just said I was borderline CF - Carrier with/symptoms. I finally found a doc who could make the connection to CF and the genetic testing verified that I have two gene mutations. So now I am getting all these drugs that they didn't have 30 years ago and I feel better than I have in 10 years.

Just keep going!!

BMH Ventura, CA
 
B

bharison

Member
Hello to all,

I am 64 years old and only officially diagnosed with CF last year. For 30 + years I have swum laps 3X A Week for about 40 minutes. This is why I am still on this planet earth. Don't give up swim, run, bike whatever it takes. My FEV hovers around 50 it has been as low as 30. My sister died from CF 40 years ago at age 21. I have struggled with lung issues all these years but the docs just said I was borderline CF - Carrier with/symptoms. I finally found a doc who could make the connection to CF and the genetic testing verified that I have two gene mutations. So now I am getting all these drugs that they didn't have 30 years ago and I feel better than I have in 10 years.

Just keep going!!

BMH Ventura, CA
 
You must log in or register to reply here.
Top