Can we get better or there's no way back?

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littlemisssilly

Guest
Hi,

You can certainly improve the way you feel, imrpove your stamina and improve your ability to cope and deal with the stress / anxiety that an illness like CF brings through exercise.

Obviously, nebuliser treatments and daily physio is the most important and I certainly have never missed any of my treatments but regular exercise gives me that something else. Sure, I get tired and sore but I force myself out of bed at 5am each day of the week just to fit in a session before work and I am finding now that I am working full time and keeping up with my peers.

As for my lungs, granted I've always been lucky that I've never been below 75% FEV1 but I still produce a lot of mucus and therefore physio and exercise is a must for me.... every day... twice a day....

Try and exercise, start small, even if it's just for short walk to start with, it will make you cough and expel mucus. When you combine this with daily proper physio, your lungs will feel clearer, I promise, even if your numbers don't change.
 
L

littlemisssilly

Guest
Hi,

You can certainly improve the way you feel, imrpove your stamina and improve your ability to cope and deal with the stress / anxiety that an illness like CF brings through exercise.

Obviously, nebuliser treatments and daily physio is the most important and I certainly have never missed any of my treatments but regular exercise gives me that something else. Sure, I get tired and sore but I force myself out of bed at 5am each day of the week just to fit in a session before work and I am finding now that I am working full time and keeping up with my peers.

As for my lungs, granted I've always been lucky that I've never been below 75% FEV1 but I still produce a lot of mucus and therefore physio and exercise is a must for me.... every day... twice a day....

Try and exercise, start small, even if it's just for short walk to start with, it will make you cough and expel mucus. When you combine this with daily proper physio, your lungs will feel clearer, I promise, even if your numbers don't change.
 
L

littlemisssilly

Guest
Hi,

You can certainly improve the way you feel, imrpove your stamina and improve your ability to cope and deal with the stress / anxiety that an illness like CF brings through exercise.

Obviously, nebuliser treatments and daily physio is the most important and I certainly have never missed any of my treatments but regular exercise gives me that something else. Sure, I get tired and sore but I force myself out of bed at 5am each day of the week just to fit in a session before work and I am finding now that I am working full time and keeping up with my peers.

As for my lungs, granted I've always been lucky that I've never been below 75% FEV1 but I still produce a lot of mucus and therefore physio and exercise is a must for me.... every day... twice a day....

Try and exercise, start small, even if it's just for short walk to start with, it will make you cough and expel mucus. When you combine this with daily proper physio, your lungs will feel clearer, I promise, even if your numbers don't change.
 
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onlyoneloveinmylife

New member
back in 04 to 05 my #s went from 48 down to 32, then i was able to get it back up to 44%. thru exercise and i also started taking advair.(which really helped).but then in 06 i dropped back down to 31 and once again starting to climb again. 34 AND CLIMBING.
 
O

onlyoneloveinmylife

New member
back in 04 to 05 my #s went from 48 down to 32, then i was able to get it back up to 44%. thru exercise and i also started taking advair.(which really helped).but then in 06 i dropped back down to 31 and once again starting to climb again. 34 AND CLIMBING.
 
O

onlyoneloveinmylife

New member
back in 04 to 05 my #s went from 48 down to 32, then i was able to get it back up to 44%. thru exercise and i also started taking advair.(which really helped).but then in 06 i dropped back down to 31 and once again starting to climb again. 34 AND CLIMBING.
 
D

dramamama

New member
Just offering a little hope. Those on the denufusol (in trial period right now) are raising their pfts by up to 30 points in some cases....that is a lot to raise your fev1 in only 3 months after years of having it be in the lower 60s, 70s. And that drug is not gene specific, it is helping almost all who use it.

My pfts took a huge swing up when I did two things:
1. anti-inflammatory diet
2. gsh

Also, on my last ct scan, my lungs looked measurably better than the YEARS before with no explanation...in the docs eyes. He was stunned because I also have a mycobacterium which has done a lot of damage to my little lungs. He said their is no way to explain it, but that damage is not evident in the last catscan....and we have not treated the mycobacterium since 2000. Of course, I have taken my health into my own hands in terms of nutrition and supplements.....Since having done this, I have been able to cough out plugs like you wouldn't believe. We have an inflammatory disease so why would an anti-inflammatory diet not help???
 
D

dramamama

New member
Just offering a little hope. Those on the denufusol (in trial period right now) are raising their pfts by up to 30 points in some cases....that is a lot to raise your fev1 in only 3 months after years of having it be in the lower 60s, 70s. And that drug is not gene specific, it is helping almost all who use it.

My pfts took a huge swing up when I did two things:
1. anti-inflammatory diet
2. gsh

Also, on my last ct scan, my lungs looked measurably better than the YEARS before with no explanation...in the docs eyes. He was stunned because I also have a mycobacterium which has done a lot of damage to my little lungs. He said their is no way to explain it, but that damage is not evident in the last catscan....and we have not treated the mycobacterium since 2000. Of course, I have taken my health into my own hands in terms of nutrition and supplements.....Since having done this, I have been able to cough out plugs like you wouldn't believe. We have an inflammatory disease so why would an anti-inflammatory diet not help???
 
D

dramamama

New member
Just offering a little hope. Those on the denufusol (in trial period right now) are raising their pfts by up to 30 points in some cases....that is a lot to raise your fev1 in only 3 months after years of having it be in the lower 60s, 70s. And that drug is not gene specific, it is helping almost all who use it.

My pfts took a huge swing up when I did two things:
1. anti-inflammatory diet
2. gsh

Also, on my last ct scan, my lungs looked measurably better than the YEARS before with no explanation...in the docs eyes. He was stunned because I also have a mycobacterium which has done a lot of damage to my little lungs. He said their is no way to explain it, but that damage is not evident in the last catscan....and we have not treated the mycobacterium since 2000. Of course, I have taken my health into my own hands in terms of nutrition and supplements.....Since having done this, I have been able to cough out plugs like you wouldn't believe. We have an inflammatory disease so why would an anti-inflammatory diet not help???
 
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