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CFers w/ no lung damage

M

mom2lillian

New member
I have a real problem with the saying *no lung damage*. Some kids yes have *no lung damage* or apparent symptoms for years and perhaps there I can see saying it, perhaps.

As adults unless you have 100% PFT's and not only your xray but a CT (some things dont show up on xray) are completely normal I dont think you can really say 'no lung damage'. I also think you should not culture anythign because lets face it that's damage too.

I think there is always damage to some degree unless perhaps if the person is symptom free and only got dx due to infertility or something. If we get sick more often than others there is damage, if we culture bugs there is damage, etc.

I just think this is one area where we allow ourselves to say, "yes, no lung damage" and somehow give ourselves a card to xyz fill in the blank.

just my 2 cents.
 
M

mom2lillian

New member
I have a real problem with the saying *no lung damage*. Some kids yes have *no lung damage* or apparent symptoms for years and perhaps there I can see saying it, perhaps.

As adults unless you have 100% PFT's and not only your xray but a CT (some things dont show up on xray) are completely normal I dont think you can really say 'no lung damage'. I also think you should not culture anythign because lets face it that's damage too.

I think there is always damage to some degree unless perhaps if the person is symptom free and only got dx due to infertility or something. If we get sick more often than others there is damage, if we culture bugs there is damage, etc.

I just think this is one area where we allow ourselves to say, "yes, no lung damage" and somehow give ourselves a card to xyz fill in the blank.

just my 2 cents.
 
M

mom2lillian

New member
I have a real problem with the saying *no lung damage*. Some kids yes have *no lung damage* or apparent symptoms for years and perhaps there I can see saying it, perhaps.

As adults unless you have 100% PFT's and not only your xray but a CT (some things dont show up on xray) are completely normal I dont think you can really say 'no lung damage'. I also think you should not culture anythign because lets face it that's damage too.

I think there is always damage to some degree unless perhaps if the person is symptom free and only got dx due to infertility or something. If we get sick more often than others there is damage, if we culture bugs there is damage, etc.

I just think this is one area where we allow ourselves to say, "yes, no lung damage" and somehow give ourselves a card to xyz fill in the blank.

just my 2 cents.
 
M

mom2lillian

New member
I have a real problem with the saying *no lung damage*. Some kids yes have *no lung damage* or apparent symptoms for years and perhaps there I can see saying it, perhaps.

As adults unless you have 100% PFT's and not only your xray but a CT (some things dont show up on xray) are completely normal I dont think you can really say 'no lung damage'. I also think you should not culture anythign because lets face it that's damage too.

I think there is always damage to some degree unless perhaps if the person is symptom free and only got dx due to infertility or something. If we get sick more often than others there is damage, if we culture bugs there is damage, etc.

I just think this is one area where we allow ourselves to say, "yes, no lung damage" and somehow give ourselves a card to xyz fill in the blank.

just my 2 cents.
 
M

mom2lillian

New member
I have a real problem with the saying *no lung damage*. Some kids yes have *no lung damage* or apparent symptoms for years and perhaps there I can see saying it, perhaps.

As adults unless you have 100% PFT's and not only your xray but a CT (some things dont show up on xray) are completely normal I dont think you can really say 'no lung damage'. I also think you should not culture anythign because lets face it that's damage too.

I think there is always damage to some degree unless perhaps if the person is symptom free and only got dx due to infertility or something. If we get sick more often than others there is damage, if we culture bugs there is damage, etc.

I just think this is one area where we allow ourselves to say, "yes, no lung damage" and somehow give ourselves a card to xyz fill in the blank.

just my 2 cents.
 
J

JazzysMom

New member
If you are referring to damage to the actual lung tissue like bronciestasis (sp?) then there are a few, but its rare. Obviously the older or more often you have exacerbations/infecitons, the greater the chance of having it.

This is what causes the permanent decrease in lung function & ultimately respiratory arrest.
 
J

JazzysMom

New member
If you are referring to damage to the actual lung tissue like bronciestasis (sp?) then there are a few, but its rare. Obviously the older or more often you have exacerbations/infecitons, the greater the chance of having it.

This is what causes the permanent decrease in lung function & ultimately respiratory arrest.
 
J

JazzysMom

New member
If you are referring to damage to the actual lung tissue like bronciestasis (sp?) then there are a few, but its rare. Obviously the older or more often you have exacerbations/infecitons, the greater the chance of having it.

This is what causes the permanent decrease in lung function & ultimately respiratory arrest.
 
J

JazzysMom

New member
If you are referring to damage to the actual lung tissue like bronciestasis (sp?) then there are a few, but its rare. Obviously the older or more often you have exacerbations/infecitons, the greater the chance of having it.

This is what causes the permanent decrease in lung function & ultimately respiratory arrest.
 
J

JazzysMom

New member
If you are referring to damage to the actual lung tissue like bronciestasis (sp?) then there are a few, but its rare. Obviously the older or more often you have exacerbations/infecitons, the greater the chance of having it.

This is what causes the permanent decrease in lung function & ultimately respiratory arrest.
 
H

hopesiris

Guest
I think I'm the only one our age that doesn't have it unless your CT scan is clear too (it may not be if you have a tiny amount of bronchiectasis that wouldn't show on xrays). I do have narrowing of the small airways which could be caused by asthma or mucus. It is not life threatening.

As Nicole said, if you culture for a bug you will eventually develop bronchiectasis. Bugs cause you to produce even more mucus and they overgrow easily, causing permanent damage to the lung tissue. This is why you need to get your genetic test and sputum test done, get a diagnosis and begin treatment. Airway clearance will help you stay healthier for a longer period of time if you are compliant with your treatment. Being compliant means doing it every single day so the mucus gets loosened up and coughed out (rather than building up in your lungs).

I culture for staph aureus. It is not the worst bug out there so I am very lucky. People with more progressed CF can culture for bugs that are resistant to antibiotics-and that can shorten the lifespan of a CFer. When you go to the CF clinic BE CAREFUL not to touch much. This bacteria can live on surfaces for long periods of time. Bring Purell hand sanitizer and also cough into a tissue if you are in the same room with other CFers.
 
H

hopesiris

Guest
I think I'm the only one our age that doesn't have it unless your CT scan is clear too (it may not be if you have a tiny amount of bronchiectasis that wouldn't show on xrays). I do have narrowing of the small airways which could be caused by asthma or mucus. It is not life threatening.

As Nicole said, if you culture for a bug you will eventually develop bronchiectasis. Bugs cause you to produce even more mucus and they overgrow easily, causing permanent damage to the lung tissue. This is why you need to get your genetic test and sputum test done, get a diagnosis and begin treatment. Airway clearance will help you stay healthier for a longer period of time if you are compliant with your treatment. Being compliant means doing it every single day so the mucus gets loosened up and coughed out (rather than building up in your lungs).

I culture for staph aureus. It is not the worst bug out there so I am very lucky. People with more progressed CF can culture for bugs that are resistant to antibiotics-and that can shorten the lifespan of a CFer. When you go to the CF clinic BE CAREFUL not to touch much. This bacteria can live on surfaces for long periods of time. Bring Purell hand sanitizer and also cough into a tissue if you are in the same room with other CFers.
 
H

hopesiris

Guest
I think I'm the only one our age that doesn't have it unless your CT scan is clear too (it may not be if you have a tiny amount of bronchiectasis that wouldn't show on xrays). I do have narrowing of the small airways which could be caused by asthma or mucus. It is not life threatening.

As Nicole said, if you culture for a bug you will eventually develop bronchiectasis. Bugs cause you to produce even more mucus and they overgrow easily, causing permanent damage to the lung tissue. This is why you need to get your genetic test and sputum test done, get a diagnosis and begin treatment. Airway clearance will help you stay healthier for a longer period of time if you are compliant with your treatment. Being compliant means doing it every single day so the mucus gets loosened up and coughed out (rather than building up in your lungs).

I culture for staph aureus. It is not the worst bug out there so I am very lucky. People with more progressed CF can culture for bugs that are resistant to antibiotics-and that can shorten the lifespan of a CFer. When you go to the CF clinic BE CAREFUL not to touch much. This bacteria can live on surfaces for long periods of time. Bring Purell hand sanitizer and also cough into a tissue if you are in the same room with other CFers.
 
H

hopesiris

Guest
I think I'm the only one our age that doesn't have it unless your CT scan is clear too (it may not be if you have a tiny amount of bronchiectasis that wouldn't show on xrays). I do have narrowing of the small airways which could be caused by asthma or mucus. It is not life threatening.

As Nicole said, if you culture for a bug you will eventually develop bronchiectasis. Bugs cause you to produce even more mucus and they overgrow easily, causing permanent damage to the lung tissue. This is why you need to get your genetic test and sputum test done, get a diagnosis and begin treatment. Airway clearance will help you stay healthier for a longer period of time if you are compliant with your treatment. Being compliant means doing it every single day so the mucus gets loosened up and coughed out (rather than building up in your lungs).

I culture for staph aureus. It is not the worst bug out there so I am very lucky. People with more progressed CF can culture for bugs that are resistant to antibiotics-and that can shorten the lifespan of a CFer. When you go to the CF clinic BE CAREFUL not to touch much. This bacteria can live on surfaces for long periods of time. Bring Purell hand sanitizer and also cough into a tissue if you are in the same room with other CFers.
 
H

hopesiris

Guest
I think I'm the only one our age that doesn't have it unless your CT scan is clear too (it may not be if you have a tiny amount of bronchiectasis that wouldn't show on xrays). I do have narrowing of the small airways which could be caused by asthma or mucus. It is not life threatening.

As Nicole said, if you culture for a bug you will eventually develop bronchiectasis. Bugs cause you to produce even more mucus and they overgrow easily, causing permanent damage to the lung tissue. This is why you need to get your genetic test and sputum test done, get a diagnosis and begin treatment. Airway clearance will help you stay healthier for a longer period of time if you are compliant with your treatment. Being compliant means doing it every single day so the mucus gets loosened up and coughed out (rather than building up in your lungs).

I culture for staph aureus. It is not the worst bug out there so I am very lucky. People with more progressed CF can culture for bugs that are resistant to antibiotics-and that can shorten the lifespan of a CFer. When you go to the CF clinic BE CAREFUL not to touch much. This bacteria can live on surfaces for long periods of time. Bring Purell hand sanitizer and also cough into a tissue if you are in the same room with other CFers.
 
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