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

[ladybug]

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

Hi.

Here's something i have never remembered to ask my doctors: can our lungs get better? Don't be afraid to answer negativelly because my guess is "no", according to what's logical. I know we go through phases when we feel bad but then we feel good again, that's a fact. But the organs themselves, can they actually get better with the meds or what's damaged is damaged?

Thanks.



Vera, 23, Portugal</end quote></div>

I don't think my lungs have "reversed" the permanant damage, but with exercise I certainly FEEL better and have regained 6-7% of my FEV1 over the past 4-5 years since doing cardio 3-4 times a week. So, maybe I'm not "undoing" damage, but my lungs must be getting stronger in some form. Maybe it makes me cough stuff out more easily so the damage can't set in as quickly. Maybe it makes the lung capacity I have stronger and more efficient. I don't know. But, I think exercise is one thing we can do to either regain or at least slow the progression this disease does on our lungs.

Obviously, its inevitable that you will loose lung function and eventually the disease will take over, but my thought is that you can slow it (and sometimes even regain for a time) by exercise, doing treatments and med. religiously, and listening to your body (destressing your life, etc.)....

 

[Ratatosk]

Yep. That's what you get when your primary CF doctor specializes in Infectious Disease. Actually, the local gastro guy gets annoyed when I mention giving DS cream. Gives me the standard line about how children will self regulate, only eat what they need for nutrients.. yadda yadda yadda. When past experience has shown us he can subsist on a juice box and a couple packages of fruit stacks. Could care LESS about food.

Last year there was an article in the local clinic newsletter. A nurse's child was diagnosed wcf at 2 months. She was quoted as saying her son only has digestive issues and if he develops respiratory problems, then they'll deal with it at that time. I'd contacted her about participating in the Great Strides walk this year, but got a response about how their child really doesn't have any symptoms, so they're not interested.

 

[Ratatosk]

Yep. That's what you get when your primary CF doctor specializes in Infectious Disease. Actually, the local gastro guy gets annoyed when I mention giving DS cream. Gives me the standard line about how children will self regulate, only eat what they need for nutrients.. yadda yadda yadda. When past experience has shown us he can subsist on a juice box and a couple packages of fruit stacks. Could care LESS about food.

Last year there was an article in the local clinic newsletter. A nurse's child was diagnosed wcf at 2 months. She was quoted as saying her son only has digestive issues and if he develops respiratory problems, then they'll deal with it at that time. I'd contacted her about participating in the Great Strides walk this year, but got a response about how their child really doesn't have any symptoms, so they're not interested.

 

[Ratatosk]

Yep. That's what you get when your primary CF doctor specializes in Infectious Disease. Actually, the local gastro guy gets annoyed when I mention giving DS cream. Gives me the standard line about how children will self regulate, only eat what they need for nutrients.. yadda yadda yadda. When past experience has shown us he can subsist on a juice box and a couple packages of fruit stacks. Could care LESS about food.

Last year there was an article in the local clinic newsletter. A nurse's child was diagnosed wcf at 2 months. She was quoted as saying her son only has digestive issues and if he develops respiratory problems, then they'll deal with it at that time. I'd contacted her about participating in the Great Strides walk this year, but got a response about how their child really doesn't have any symptoms, so they're not interested.

 

[Landy]

From what I understand, the scar tissue & any other damage can't be reversed, but if your lungs are filled with mucus, you sure can do things to get that cleared out of there & regain that space.
My FEV also has increased by 4-5% just by walking on the treadmill approx 5X a week.
Sometimes we just go through spells where we think it's the "beginning of the end". I had one such time a couple of years ago. My sputum culture turned up MRSA and after it was treated, I felt MUCH better!
Hang in there & make sure that your doctor is checking everything to make sure they've caught any new bugs you may have & that they are treating them.

 

[Landy]

From what I understand, the scar tissue & any other damage can't be reversed, but if your lungs are filled with mucus, you sure can do things to get that cleared out of there & regain that space.
My FEV also has increased by 4-5% just by walking on the treadmill approx 5X a week.
Sometimes we just go through spells where we think it's the "beginning of the end". I had one such time a couple of years ago. My sputum culture turned up MRSA and after it was treated, I felt MUCH better!
Hang in there & make sure that your doctor is checking everything to make sure they've caught any new bugs you may have & that they are treating them.

 

[Landy]

From what I understand, the scar tissue & any other damage can't be reversed, but if your lungs are filled with mucus, you sure can do things to get that cleared out of there & regain that space.
My FEV also has increased by 4-5% just by walking on the treadmill approx 5X a week.
Sometimes we just go through spells where we think it's the "beginning of the end". I had one such time a couple of years ago. My sputum culture turned up MRSA and after it was treated, I felt MUCH better!
Hang in there & make sure that your doctor is checking everything to make sure they've caught any new bugs you may have & that they are treating them.

 

[NoExcuses]

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

Our doctor told us early on -- when talking about priorities for CF care.



"Some people will tell you that nutrition is the most important aspect of CF care. But on a scale of 1 to 10, I'd put nutrition down toward the bottom and proper lung care at a 10. You can regain weight, you can't regain lung tissue once it's gone. It's gone".</end quote></div>

You know what will help your lungs stay healthy? Proper nutrition. That's funny that your doc said that.

 

[NoExcuses]

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

Our doctor told us early on -- when talking about priorities for CF care.



"Some people will tell you that nutrition is the most important aspect of CF care. But on a scale of 1 to 10, I'd put nutrition down toward the bottom and proper lung care at a 10. You can regain weight, you can't regain lung tissue once it's gone. It's gone".</end quote></div>

You know what will help your lungs stay healthy? Proper nutrition. That's funny that your doc said that.

 

[NoExcuses]

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

Our doctor told us early on -- when talking about priorities for CF care.



"Some people will tell you that nutrition is the most important aspect of CF care. But on a scale of 1 to 10, I'd put nutrition down toward the bottom and proper lung care at a 10. You can regain weight, you can't regain lung tissue once it's gone. It's gone".</end quote></div>

You know what will help your lungs stay healthy? Proper nutrition. That's funny that your doc said that.

 

[NoExcuses]

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

Hi.

Here's something i have never remembered to ask my doctors: can our lungs get better? Don't be afraid to answer negativelly because my guess is "no", according to what's logical. I know we go through phases when we feel bad but then we feel good again, that's a fact. But the organs themselves, can they actually get better with the meds or what's damaged is damaged?

Thanks.



Vera, 23, Portugal</end quote></div>

To answer the original question, if damage could be reversed, people wouldn't die of this disease.

 

[NoExcuses]

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

Hi.

Here's something i have never remembered to ask my doctors: can our lungs get better? Don't be afraid to answer negativelly because my guess is "no", according to what's logical. I know we go through phases when we feel bad but then we feel good again, that's a fact. But the organs themselves, can they actually get better with the meds or what's damaged is damaged?

Thanks.



Vera, 23, Portugal</end quote></div>

To answer the original question, if damage could be reversed, people wouldn't die of this disease.

 

[NoExcuses]

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

Hi.

Here's something i have never remembered to ask my doctors: can our lungs get better? Don't be afraid to answer negativelly because my guess is "no", according to what's logical. I know we go through phases when we feel bad but then we feel good again, that's a fact. But the organs themselves, can they actually get better with the meds or what's damaged is damaged?

Thanks.



Vera, 23, Portugal</end quote></div>

To answer the original question, if damage could be reversed, people wouldn't die of this disease.

 

[Ender]

I think between now and endstage lung disease, there is a window where you can make an improvement in your lung function. A lot of lung issues could be a result of too much inflammation, insufficient diet, clearance etc...and if you were to alleviate these things, I'm sure you could increase your lung function...

I know sometimes i get a bit slack on my health, and i can definitely feel it go down...but with some crazy excercise, a good lifestyle and some luck, i can usually get it back up there again <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Just don't get too caught up in it. I am a firm believer that if you try hard enough, to a certain point, you can get better.

 

[Ender]

I think between now and endstage lung disease, there is a window where you can make an improvement in your lung function. A lot of lung issues could be a result of too much inflammation, insufficient diet, clearance etc...and if you were to alleviate these things, I'm sure you could increase your lung function...

I know sometimes i get a bit slack on my health, and i can definitely feel it go down...but with some crazy excercise, a good lifestyle and some luck, i can usually get it back up there again <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Just don't get too caught up in it. I am a firm believer that if you try hard enough, to a certain point, you can get better.

 

[Ender]

I think between now and endstage lung disease, there is a window where you can make an improvement in your lung function. A lot of lung issues could be a result of too much inflammation, insufficient diet, clearance etc...and if you were to alleviate these things, I'm sure you could increase your lung function...

I know sometimes i get a bit slack on my health, and i can definitely feel it go down...but with some crazy excercise, a good lifestyle and some luck, i can usually get it back up there again <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Just don't get too caught up in it. I am a firm believer that if you try hard enough, to a certain point, you can get better.

 

[JazzysMom]

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

I think between now and endstage lung disease, there is a window where you can make an improvement in your lung function. A lot of lung issues could be a result of too much inflammation, insufficient diet, clearance etc...and if you were to alleviate these things, I'm sure you could increase your lung function...



I know sometimes i get a bit slack on my health, and i can definitely feel it go down...but with some crazy excercise, a good lifestyle and some luck, i can usually get it back up there again <img src="">


Just don't get too caught up in it. I am a firm believer that if you try hard enough, to a certain point, you can get better.</end quote></div>


TO A CERTAIN POINT as long as its only mucous build up, inflammation, airways restrictions etc. With time these are often able to be improved. Once its advanced to actual damave to the lung tissue then THAT CAN NOT BE FIXED!

 

[JazzysMom]

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

I think between now and endstage lung disease, there is a window where you can make an improvement in your lung function. A lot of lung issues could be a result of too much inflammation, insufficient diet, clearance etc...and if you were to alleviate these things, I'm sure you could increase your lung function...



I know sometimes i get a bit slack on my health, and i can definitely feel it go down...but with some crazy excercise, a good lifestyle and some luck, i can usually get it back up there again <img src="">


Just don't get too caught up in it. I am a firm believer that if you try hard enough, to a certain point, you can get better.</end quote></div>


TO A CERTAIN POINT as long as its only mucous build up, inflammation, airways restrictions etc. With time these are often able to be improved. Once its advanced to actual damave to the lung tissue then THAT CAN NOT BE FIXED!

 

[JazzysMom]

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

I think between now and endstage lung disease, there is a window where you can make an improvement in your lung function. A lot of lung issues could be a result of too much inflammation, insufficient diet, clearance etc...and if you were to alleviate these things, I'm sure you could increase your lung function...



I know sometimes i get a bit slack on my health, and i can definitely feel it go down...but with some crazy excercise, a good lifestyle and some luck, i can usually get it back up there again <img src="">


Just don't get too caught up in it. I am a firm believer that if you try hard enough, to a certain point, you can get better.</end quote></div>


TO A CERTAIN POINT as long as its only mucous build up, inflammation, airways restrictions etc. With time these are often able to be improved. Once its advanced to actual damave to the lung tissue then THAT CAN NOT BE FIXED!

 

[mom2lillian]

I re-iterate what has been said

Actual DAMAGE can't be reversed however there is NO WAY to tell what % is damage and what % is mucous, plugs, inflammation etc until you put in some time

Excercise, adherence to therapies, nutrition, and the like can go a LONG way to improving your lungs a huge % when it may be believed it is damage when in fact it is inflammation and sputum. If you are doing everythign perfectly and there is not change over course of a long time then it may be safe to assume that lung function is lost otherwise there is hope.

When I was dx my #'s were in 60's. I immediately started proper adherence to <u>all therapeis </u>and by years end I was at 100% lung function and at dx that was not though possible since it was ASSUMED it was DAMAGE from 20+years of no treatments. Of course I still have bronchiectasis damage but functions are great. I realize this is not normal and I have a 'mild' case but I am only using it as an example to show that you just can't ASSUME it's damage and give up.