Fev1 not responding

[TIN]

long time lurker here. first post, though... so please bare with me:

are there other "success" stories like jazzy's mom shared, where people HAVE been able to improve their fev1 -- even if it took quite a while?

if so, please share.

btw... on the idea of hope: one can't really say anything about hope being 'true' or 'false' in terms of pfts coming back up or staying at a new, lower level. no one knows another's full case history/circumstances. Until your doctor tells you you've reached a new baseline, i think there's always room for hope! And even then, it <i>may </i>be possible to surpass expectations. I think a doctor would love to be "wrong" in that direction.

 

[lightNlife]

I've given up asking the question of "is this normal" and "what can I expect" from anything involving lung function and response to meds. Sakasuka is right. Sometimes lung function just flat out doesn't come back; and that's why 1 out of every 2 of us will die before turning 37 years old.

Even people without CF lose lung function as they age. CFers lose lung function at a much higher rate because of all the infections we get. The role of antibiotics is to treat the infections in hopes of clearing it up before too much permanent damage can occur. Antibiotics cannot, in and of themselves, restore lung function. Lung function improvement is one of the indicators that an antibiotic course has worked to eradicate the infection.

No matter what we do to take care of ourselves, such as eating right, exericising and being exceptionally diligent with our treatments, our best efforts can and will be trumped by our genetics. This is not a defeatist or pessimistic viewpoint. It's just the reality that cystic fibrosis did not "read the book," so to speak, as to how it's supposed to respond to treatment.

 

[lightNlife]

I've given up asking the question of "is this normal" and "what can I expect" from anything involving lung function and response to meds. Sakasuka is right. Sometimes lung function just flat out doesn't come back; and that's why 1 out of every 2 of us will die before turning 37 years old.

Even people without CF lose lung function as they age. CFers lose lung function at a much higher rate because of all the infections we get. The role of antibiotics is to treat the infections in hopes of clearing it up before too much permanent damage can occur. Antibiotics cannot, in and of themselves, restore lung function. Lung function improvement is one of the indicators that an antibiotic course has worked to eradicate the infection.

No matter what we do to take care of ourselves, such as eating right, exericising and being exceptionally diligent with our treatments, our best efforts can and will be trumped by our genetics. This is not a defeatist or pessimistic viewpoint. It's just the reality that cystic fibrosis did not "read the book," so to speak, as to how it's supposed to respond to treatment.

 

[lightNlife]

I've given up asking the question of "is this normal" and "what can I expect" from anything involving lung function and response to meds. Sakasuka is right. Sometimes lung function just flat out doesn't come back; and that's why 1 out of every 2 of us will die before turning 37 years old.

Even people without CF lose lung function as they age. CFers lose lung function at a much higher rate because of all the infections we get. The role of antibiotics is to treat the infections in hopes of clearing it up before too much permanent damage can occur. Antibiotics cannot, in and of themselves, restore lung function. Lung function improvement is one of the indicators that an antibiotic course has worked to eradicate the infection.

No matter what we do to take care of ourselves, such as eating right, exericising and being exceptionally diligent with our treatments, our best efforts can and will be trumped by our genetics. This is not a defeatist or pessimistic viewpoint. It's just the reality that cystic fibrosis did not "read the book," so to speak, as to how it's supposed to respond to treatment.

 

[cf4life]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cf4life</b></i>







ooch, a bit blunt and probably not very helpful to the poster.... You may be correct in the long term, hope is not lost in the short term.







All hope is not lost when you have a drop and they don't bounce back immediately. After 5 weeks of IV's you may be pretty deconditioned. Also all the inflammation from you infection may not have gone done. Get into an exercise routine and stick to it for a month or two and then try your pfts again. Antibiotics can only help so much after awhile and you need to put in more effort to bounce back. With some hard work, exercise, diet, med compliance, you might be surprised to see some lung function come back, especially after 5 week battle.</end quote></div>



Ouch, I think you're giving false hope.



If CF was that simple, no one would die of this disease. We all would live normal life expectancy and never have declines in lung function.



I don't think your post was very helpful either! <img src="i/expressions/face-icon-small-disgusted.gif" border="0"></end quote></div>



I guess you didn't get my point or just too interested in writing that response. I will try to be more clear..

Yes, with CF lung function trends down. I think we are all aware of that. In time of infection lung function gets worse. We take antibiotics for a couple weeks and lung function hopefully gets better. Sometimes, infections are worse than normal and after many periods on IV's it takes longer to battle the infection and IV's are given for longer. After 5 weeks on being on antibiotics and fighting an infection, the body is pretty beat up and most likely deconditioned. At this point, more IV's most likely man not help, could make things worse with resistance. I have been in this exact situation, doctors said no more antibiotics and told me to rest and exercise. My FEV1 was down 11 percentage points. A year later, I am back to my baseline. I was truly that deconditioned physically from fighting the infection. Now I am not saying this is always possible, but don't just assume the worst and don't assume more IV's are going to do anything except make things worse in the long run. Now if one is exercising, doing their nebs, and eating well, then yes CF takes our lung function and then just accept it and try to keep your new baseline. But don't assume it is lost so soon after an infection/IVs, give your body some time to heal, inflammation to reside and time to get your conditioning back before making this determination.

 

[cf4life]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cf4life</b></i>







ooch, a bit blunt and probably not very helpful to the poster.... You may be correct in the long term, hope is not lost in the short term.







All hope is not lost when you have a drop and they don't bounce back immediately. After 5 weeks of IV's you may be pretty deconditioned. Also all the inflammation from you infection may not have gone done. Get into an exercise routine and stick to it for a month or two and then try your pfts again. Antibiotics can only help so much after awhile and you need to put in more effort to bounce back. With some hard work, exercise, diet, med compliance, you might be surprised to see some lung function come back, especially after 5 week battle.</end quote></div>



Ouch, I think you're giving false hope.



If CF was that simple, no one would die of this disease. We all would live normal life expectancy and never have declines in lung function.



I don't think your post was very helpful either! <img src="i/expressions/face-icon-small-disgusted.gif" border="0"></end quote></div>



I guess you didn't get my point or just too interested in writing that response. I will try to be more clear..

Yes, with CF lung function trends down. I think we are all aware of that. In time of infection lung function gets worse. We take antibiotics for a couple weeks and lung function hopefully gets better. Sometimes, infections are worse than normal and after many periods on IV's it takes longer to battle the infection and IV's are given for longer. After 5 weeks on being on antibiotics and fighting an infection, the body is pretty beat up and most likely deconditioned. At this point, more IV's most likely man not help, could make things worse with resistance. I have been in this exact situation, doctors said no more antibiotics and told me to rest and exercise. My FEV1 was down 11 percentage points. A year later, I am back to my baseline. I was truly that deconditioned physically from fighting the infection. Now I am not saying this is always possible, but don't just assume the worst and don't assume more IV's are going to do anything except make things worse in the long run. Now if one is exercising, doing their nebs, and eating well, then yes CF takes our lung function and then just accept it and try to keep your new baseline. But don't assume it is lost so soon after an infection/IVs, give your body some time to heal, inflammation to reside and time to get your conditioning back before making this determination.

 

[cf4life]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cf4life</b></i>







ooch, a bit blunt and probably not very helpful to the poster.... You may be correct in the long term, hope is not lost in the short term.







All hope is not lost when you have a drop and they don't bounce back immediately. After 5 weeks of IV's you may be pretty deconditioned. Also all the inflammation from you infection may not have gone done. Get into an exercise routine and stick to it for a month or two and then try your pfts again. Antibiotics can only help so much after awhile and you need to put in more effort to bounce back. With some hard work, exercise, diet, med compliance, you might be surprised to see some lung function come back, especially after 5 week battle.</end quote></div>



Ouch, I think you're giving false hope.



If CF was that simple, no one would die of this disease. We all would live normal life expectancy and never have declines in lung function.



I don't think your post was very helpful either! <img src="i/expressions/face-icon-small-disgusted.gif" border="0"></end quote></div>



I guess you didn't get my point or just too interested in writing that response. I will try to be more clear..

Yes, with CF lung function trends down. I think we are all aware of that. In time of infection lung function gets worse. We take antibiotics for a couple weeks and lung function hopefully gets better. Sometimes, infections are worse than normal and after many periods on IV's it takes longer to battle the infection and IV's are given for longer. After 5 weeks on being on antibiotics and fighting an infection, the body is pretty beat up and most likely deconditioned. At this point, more IV's most likely man not help, could make things worse with resistance. I have been in this exact situation, doctors said no more antibiotics and told me to rest and exercise. My FEV1 was down 11 percentage points. A year later, I am back to my baseline. I was truly that deconditioned physically from fighting the infection. Now I am not saying this is always possible, but don't just assume the worst and don't assume more IV's are going to do anything except make things worse in the long run. Now if one is exercising, doing their nebs, and eating well, then yes CF takes our lung function and then just accept it and try to keep your new baseline. But don't assume it is lost so soon after an infection/IVs, give your body some time to heal, inflammation to reside and time to get your conditioning back before making this determination.

 

[Kelli]

To the original poster....
my FEV was stuck around 35'ish, I started exercising between 3 & 4 times a week and it was up to 59 after about 6 weeks of exercise.
There is hope!
<img src="i/expressions/face-icon-small-smile.gif" border="0">
KELLI
29 w/CF & a good attitude

 

[Kelli]

To the original poster....
my FEV was stuck around 35'ish, I started exercising between 3 & 4 times a week and it was up to 59 after about 6 weeks of exercise.
There is hope!
<img src="i/expressions/face-icon-small-smile.gif" border="0">
KELLI
29 w/CF & a good attitude

 

[Kelli]

To the original poster....
my FEV was stuck around 35'ish, I started exercising between 3 & 4 times a week and it was up to 59 after about 6 weeks of exercise.
There is hope!
<img src="i/expressions/face-icon-small-smile.gif" border="0">
KELLI
29 w/CF & a good attitude

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

The role of antibiotics is to treat the infections in hopes of clearing it up before too much permanent damage can occur. Antibiotics cannot, in and of themselves, restore lung function. Lung function improvement is one of the indicators that an antibiotic course has worked to eradicate the infection.
</end quote></div>


That is such a great point. Very well said

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

The role of antibiotics is to treat the infections in hopes of clearing it up before too much permanent damage can occur. Antibiotics cannot, in and of themselves, restore lung function. Lung function improvement is one of the indicators that an antibiotic course has worked to eradicate the infection.
</end quote></div>


That is such a great point. Very well said

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

The role of antibiotics is to treat the infections in hopes of clearing it up before too much permanent damage can occur. Antibiotics cannot, in and of themselves, restore lung function. Lung function improvement is one of the indicators that an antibiotic course has worked to eradicate the infection.
</end quote></div>


That is such a great point. Very well said

 

[vestgirl]

I believe that when your FEV's get low there is always a chance of bringing them back up. I'm actually at the point now where I am trying to bring mine back up as well. I'm usually at 69-70% FEV1 and recently I have been at 49%. Maybe we can hope and motivate each other. Also, keep in mind that we also have other factors that could cause low FEV's as well. Whether it be bugs in our lungs, infection, scar tissue, allergies, asthma bronchial constriction, or weather changes. Varies from person to person. I'm hoping in my case that my low FEV's are due to the high oak allergy season and pollen all over the place. Keep me posted and let me know if anything changes. I hope you start to feel better and things start lookin up.

 

[vestgirl]

I believe that when your FEV's get low there is always a chance of bringing them back up. I'm actually at the point now where I am trying to bring mine back up as well. I'm usually at 69-70% FEV1 and recently I have been at 49%. Maybe we can hope and motivate each other. Also, keep in mind that we also have other factors that could cause low FEV's as well. Whether it be bugs in our lungs, infection, scar tissue, allergies, asthma bronchial constriction, or weather changes. Varies from person to person. I'm hoping in my case that my low FEV's are due to the high oak allergy season and pollen all over the place. Keep me posted and let me know if anything changes. I hope you start to feel better and things start lookin up.

 

[vestgirl]

I believe that when your FEV's get low there is always a chance of bringing them back up. I'm actually at the point now where I am trying to bring mine back up as well. I'm usually at 69-70% FEV1 and recently I have been at 49%. Maybe we can hope and motivate each other. Also, keep in mind that we also have other factors that could cause low FEV's as well. Whether it be bugs in our lungs, infection, scar tissue, allergies, asthma bronchial constriction, or weather changes. Varies from person to person. I'm hoping in my case that my low FEV's are due to the high oak allergy season and pollen all over the place. Keep me posted and let me know if anything changes. I hope you start to feel better and things start lookin up.

 

[AnD]

I think that everybody has good points, but until everything is exhausted, then i think you can still hope to get them back up. Mine went back up to my baseline from 2 years ago, and I guess the good clean out in Oct (had a liver infection) and starting swimming again and a lot of prayer was what did it. I went from 57% to 66% in 3 months. So you just never know; you just make course corrections as you go, both physically and mentally <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[AnD]

I think that everybody has good points, but until everything is exhausted, then i think you can still hope to get them back up. Mine went back up to my baseline from 2 years ago, and I guess the good clean out in Oct (had a liver infection) and starting swimming again and a lot of prayer was what did it. I went from 57% to 66% in 3 months. So you just never know; you just make course corrections as you go, both physically and mentally <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[AnD]

I think that everybody has good points, but until everything is exhausted, then i think you can still hope to get them back up. Mine went back up to my baseline from 2 years ago, and I guess the good clean out in Oct (had a liver infection) and starting swimming again and a lot of prayer was what did it. I went from 57% to 66% in 3 months. So you just never know; you just make course corrections as you go, both physically and mentally <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[Busbie]

Hi,

Thank you for all your helpful comments, I may have convayed a sense of worry but I have been in this situation before. They were down last year and they came back but just not as much as this year. I am going back to hospital on Monday so I will keep you posted.

Bye the way Sakasuka I am 35 years old and I have seen many friends die of this disease so I know lung function can drop and not come back how do you think I got to 44%.