A few questions about sudden FEV1 drop

[Alexander]

Hi everybody!

This is my case:
When i was 13 years old my lung function was at 101%!
At that time I had a pneumonia a few years ago.
I had pseudomonas and b.cepacia (sry if i make mistakes I'm german) multiple times and every time I got it I was able to get rid of them.

When I was about 16, my lung function suddently "dropped" to the 80s. It stayed at that level for a while but then it went down to the 50s and then to the 40s. For a short period of time it was even at 38%(FEV1).

Right now it went back to 44%.
I have no pseudomonas and b. cepacia at the moment. It wasnt found in my sputum for the last 2 years now.
And the best of all is that my lungs are hardly damaged. My doctor was surprised. But neither the doctors in Germany nor the ones in the US can tell me why my lung function is so low, eventhough my lungs are in very good shape.

I might left out some details so go ahead and ask me anything.
I was also wondering if others experience the same phenomenon?

Oh yeah, and a few months ago it was at 60% but then i got sick and it went back to the mid 40s.

I would be very happy for any replies,
thanks!

Best regards,
Alexander

 

[Alexander]

Hi everybody!

This is my case:
When i was 13 years old my lung function was at 101%!
At that time I had a pneumonia a few years ago.
I had pseudomonas and b.cepacia (sry if i make mistakes I'm german) multiple times and every time I got it I was able to get rid of them.

When I was about 16, my lung function suddently "dropped" to the 80s. It stayed at that level for a while but then it went down to the 50s and then to the 40s. For a short period of time it was even at 38%(FEV1).

Right now it went back to 44%.
I have no pseudomonas and b. cepacia at the moment. It wasnt found in my sputum for the last 2 years now.
And the best of all is that my lungs are hardly damaged. My doctor was surprised. But neither the doctors in Germany nor the ones in the US can tell me why my lung function is so low, eventhough my lungs are in very good shape.

I might left out some details so go ahead and ask me anything.
I was also wondering if others experience the same phenomenon?

Oh yeah, and a few months ago it was at 60% but then i got sick and it went back to the mid 40s.

I would be very happy for any replies,
thanks!

Best regards,
Alexander

 

[Alexander]

Hi everybody!

This is my case:
When i was 13 years old my lung function was at 101%!
At that time I had a pneumonia a few years ago.
I had pseudomonas and b.cepacia (sry if i make mistakes I'm german) multiple times and every time I got it I was able to get rid of them.

When I was about 16, my lung function suddently "dropped" to the 80s. It stayed at that level for a while but then it went down to the 50s and then to the 40s. For a short period of time it was even at 38%(FEV1).

Right now it went back to 44%.
I have no pseudomonas and b. cepacia at the moment. It wasnt found in my sputum for the last 2 years now.
And the best of all is that my lungs are hardly damaged. My doctor was surprised. But neither the doctors in Germany nor the ones in the US can tell me why my lung function is so low, eventhough my lungs are in very good shape.

I might left out some details so go ahead and ask me anything.
I was also wondering if others experience the same phenomenon?

Oh yeah, and a few months ago it was at 60% but then i got sick and it went back to the mid 40s.

I would be very happy for any replies,
thanks!

Best regards,
Alexander

 

[Alexander]

Hi everybody!

This is my case:
When i was 13 years old my lung function was at 101%!
At that time I had a pneumonia a few years ago.
I had pseudomonas and b.cepacia (sry if i make mistakes I'm german) multiple times and every time I got it I was able to get rid of them.

When I was about 16, my lung function suddently "dropped" to the 80s. It stayed at that level for a while but then it went down to the 50s and then to the 40s. For a short period of time it was even at 38%(FEV1).

Right now it went back to 44%.
I have no pseudomonas and b. cepacia at the moment. It wasnt found in my sputum for the last 2 years now.
And the best of all is that my lungs are hardly damaged. My doctor was surprised. But neither the doctors in Germany nor the ones in the US can tell me why my lung function is so low, eventhough my lungs are in very good shape.

I might left out some details so go ahead and ask me anything.
I was also wondering if others experience the same phenomenon?

Oh yeah, and a few months ago it was at 60% but then i got sick and it went back to the mid 40s.

I would be very happy for any replies,
thanks!

Best regards,
Alexander

 

[Alexander]

Hi everybody!
<br />
<br />This is my case:
<br />When i was 13 years old my lung function was at 101%!
<br />At that time I had a pneumonia a few years ago.
<br />I had pseudomonas and b.cepacia (sry if i make mistakes I'm german) multiple times and every time I got it I was able to get rid of them.
<br />
<br />When I was about 16, my lung function suddently "dropped" to the 80s. It stayed at that level for a while but then it went down to the 50s and then to the 40s. For a short period of time it was even at 38%(FEV1).
<br />
<br />Right now it went back to 44%.
<br />I have no pseudomonas and b. cepacia at the moment. It wasnt found in my sputum for the last 2 years now.
<br />And the best of all is that my lungs are hardly damaged. My doctor was surprised. But neither the doctors in Germany nor the ones in the US can tell me why my lung function is so low, eventhough my lungs are in very good shape.
<br />
<br />I might left out some details so go ahead and ask me anything.
<br />I was also wondering if others experience the same phenomenon?
<br />
<br />Oh yeah, and a few months ago it was at 60% but then i got sick and it went back to the mid 40s.
<br />
<br />I would be very happy for any replies,
<br />thanks!
<br />
<br />Best regards,
<br />Alexander
<br />
<br />
<br />

 

[Landy]

I guess my question is how in the world did you kick the pseudomonas and cepacia so that others could try this as well??

I really don't have anything to offer on the other question...just make sure that they are checking for <i>everything</i> on your sputum cultures.

 

[Landy]

I guess my question is how in the world did you kick the pseudomonas and cepacia so that others could try this as well??

I really don't have anything to offer on the other question...just make sure that they are checking for <i>everything</i> on your sputum cultures.

 

[Landy]

I guess my question is how in the world did you kick the pseudomonas and cepacia so that others could try this as well??

I really don't have anything to offer on the other question...just make sure that they are checking for <i>everything</i> on your sputum cultures.

 

[Landy]

I guess my question is how in the world did you kick the pseudomonas and cepacia so that others could try this as well??

I really don't have anything to offer on the other question...just make sure that they are checking for <i>everything</i> on your sputum cultures.

 

[Landy]

I guess my question is how in the world did you kick the pseudomonas and cepacia so that others could try this as well??
<br />
<br />I really don't have anything to offer on the other question...just make sure that they are checking for <i>everything</i> on your sputum cultures.

 

[Nightwriter]

Hi Alexander,

I have a simiar history in that my FEV1 has bounced around alot, but due to many repeated infections, unlike you I have sustained a lot of lung damage. So mine can never go up as high as yours again, but I have an acceptable baseline that it goes back to every time, instead of getting going lower and lower.

This is what I know to be true in my case... you can see if it rings true for you...

Twelve years ago I started going to a doctor that taught me there is an asthma component to CF. We have hypersensitive lungs meaning there are many triggers that cause our airways to constrict and/or swell inside. It makes it hard for air to get in. Most people aren't even aware of having asthma unless FEV1 drops below 50%. So the bouncing around of the numbers is dependent on how open not only the large airways are, but the small airways also.

When you are sick, there is usually a direct correlation with your FEV1. When there is an asthma trigger, inflammation goes up, the airways swell -- you may get an exacerbation which can lead to pneumonia. Control the asthma, FEV1 goes up, less excacerbations.

It is very interesting that you have controlled Pseudomonas and B.Cepacia and have no lung damage. Please share your secrets. In the meantime, get tested for asthma with pre and post bronchodialtors and test for allergies.

 

[Nightwriter]

Hi Alexander,

I have a simiar history in that my FEV1 has bounced around alot, but due to many repeated infections, unlike you I have sustained a lot of lung damage. So mine can never go up as high as yours again, but I have an acceptable baseline that it goes back to every time, instead of getting going lower and lower.

This is what I know to be true in my case... you can see if it rings true for you...

Twelve years ago I started going to a doctor that taught me there is an asthma component to CF. We have hypersensitive lungs meaning there are many triggers that cause our airways to constrict and/or swell inside. It makes it hard for air to get in. Most people aren't even aware of having asthma unless FEV1 drops below 50%. So the bouncing around of the numbers is dependent on how open not only the large airways are, but the small airways also.

When you are sick, there is usually a direct correlation with your FEV1. When there is an asthma trigger, inflammation goes up, the airways swell -- you may get an exacerbation which can lead to pneumonia. Control the asthma, FEV1 goes up, less excacerbations.

It is very interesting that you have controlled Pseudomonas and B.Cepacia and have no lung damage. Please share your secrets. In the meantime, get tested for asthma with pre and post bronchodialtors and test for allergies.

 

[Nightwriter]

Hi Alexander,

I have a simiar history in that my FEV1 has bounced around alot, but due to many repeated infections, unlike you I have sustained a lot of lung damage. So mine can never go up as high as yours again, but I have an acceptable baseline that it goes back to every time, instead of getting going lower and lower.

This is what I know to be true in my case... you can see if it rings true for you...

Twelve years ago I started going to a doctor that taught me there is an asthma component to CF. We have hypersensitive lungs meaning there are many triggers that cause our airways to constrict and/or swell inside. It makes it hard for air to get in. Most people aren't even aware of having asthma unless FEV1 drops below 50%. So the bouncing around of the numbers is dependent on how open not only the large airways are, but the small airways also.

When you are sick, there is usually a direct correlation with your FEV1. When there is an asthma trigger, inflammation goes up, the airways swell -- you may get an exacerbation which can lead to pneumonia. Control the asthma, FEV1 goes up, less excacerbations.

It is very interesting that you have controlled Pseudomonas and B.Cepacia and have no lung damage. Please share your secrets. In the meantime, get tested for asthma with pre and post bronchodialtors and test for allergies.

 

[Nightwriter]

Hi Alexander,

I have a simiar history in that my FEV1 has bounced around alot, but due to many repeated infections, unlike you I have sustained a lot of lung damage. So mine can never go up as high as yours again, but I have an acceptable baseline that it goes back to every time, instead of getting going lower and lower.

This is what I know to be true in my case... you can see if it rings true for you...

Twelve years ago I started going to a doctor that taught me there is an asthma component to CF. We have hypersensitive lungs meaning there are many triggers that cause our airways to constrict and/or swell inside. It makes it hard for air to get in. Most people aren't even aware of having asthma unless FEV1 drops below 50%. So the bouncing around of the numbers is dependent on how open not only the large airways are, but the small airways also.

When you are sick, there is usually a direct correlation with your FEV1. When there is an asthma trigger, inflammation goes up, the airways swell -- you may get an exacerbation which can lead to pneumonia. Control the asthma, FEV1 goes up, less excacerbations.

It is very interesting that you have controlled Pseudomonas and B.Cepacia and have no lung damage. Please share your secrets. In the meantime, get tested for asthma with pre and post bronchodialtors and test for allergies.

 

[Nightwriter]

Hi Alexander,
<br />
<br />I have a simiar history in that my FEV1 has bounced around alot, but due to many repeated infections, unlike you I have sustained a lot of lung damage. So mine can never go up as high as yours again, but I have an acceptable baseline that it goes back to every time, instead of getting going lower and lower.
<br />
<br />This is what I know to be true in my case... you can see if it rings true for you...
<br />
<br />Twelve years ago I started going to a doctor that taught me there is an asthma component to CF. We have hypersensitive lungs meaning there are many triggers that cause our airways to constrict and/or swell inside. It makes it hard for air to get in. Most people aren't even aware of having asthma unless FEV1 drops below 50%. So the bouncing around of the numbers is dependent on how open not only the large airways are, but the small airways also.
<br />
<br />When you are sick, there is usually a direct correlation with your FEV1. When there is an asthma trigger, inflammation goes up, the airways swell -- you may get an exacerbation which can lead to pneumonia. Control the asthma, FEV1 goes up, less excacerbations.
<br />
<br />It is very interesting that you have controlled Pseudomonas and B.Cepacia and have no lung damage. Please share your secrets. In the meantime, get tested for asthma with pre and post bronchodialtors and test for allergies.

 

[Alexander]

Well, in Germany we have a different philosophy concerning the handling on bacteria.
When I asked my CF doctor in Wisconsin if there was b.cepacia in the well water of my grandmothers house that I stayed in, he said he wouldnt know. I became curious and asked what
their "rules" were, to prevent any bacteria from entering the lungs. He said they dont have any. That really shocked me. Heres a list of what i am told to watch out for:
- open standing water is contaminated with pseudomonas 2hours after being exposed to air
example: When I open a bottle of water I have to drink it within 2hours
- run faucet for 2 minutes with hot water (to kill bacteria) before taking a bath or a shower
explanation: That is so the old water sitting in the pipes will be washed out properly
- dont eat onions, because layers contain b.cepacia and several other vegetables

There are a few other things I cant think of right now.
But fact is, that the things I have listed really do contain those bacteria.
Another thing that could have helped me fighting off the bacteria is TOBI, which I have been inhaling for the past 10 years now.

To summarize it:
In the US it seems that there are no precautions concerning the prevention of bacterial infections. But if you have any bacteria its "bombs away!" with antibiotics.
Whereas in Germany you are on a constant TOBI therapy and are told to watch out (see list above). The aim is to do so little amount of Infusion Therapies as possible.

Now I'm not criticizing any method, its just what i have experienced. In my opinion it would be best to have a good mix of both methods. I think people should watch out for bacteria, but when it does happen that they get it, they should get an intense Infusion Therapy like they do in the US. Im saying that, because in Germany the Infusion Therapies are relatively weak in the dosage of antibiotics given to you compared to the dosage given to you in the US.

To come back to your question:
I cant really tell you what the key factor is, that helps me getting rid of the bacteria. As far as I know even in Germany I am an exception. I just tried to lay out how we approach the bacteria in germany, maybe that helped you out.

btw: I am not completely bacteria free. I do have aspergilles (sry again for possible mistakes) and some cind of fungus in my lungs. I lucked out so far on the really bad ones.

Oh, and I will probably have my first bronchioskopie(german word) soon, to be 100% sure about the bacterial cultures.

Greetings,
Alexander

 

[Alexander]

Well, in Germany we have a different philosophy concerning the handling on bacteria.
When I asked my CF doctor in Wisconsin if there was b.cepacia in the well water of my grandmothers house that I stayed in, he said he wouldnt know. I became curious and asked what
their "rules" were, to prevent any bacteria from entering the lungs. He said they dont have any. That really shocked me. Heres a list of what i am told to watch out for:
- open standing water is contaminated with pseudomonas 2hours after being exposed to air
example: When I open a bottle of water I have to drink it within 2hours
- run faucet for 2 minutes with hot water (to kill bacteria) before taking a bath or a shower
explanation: That is so the old water sitting in the pipes will be washed out properly
- dont eat onions, because layers contain b.cepacia and several other vegetables

There are a few other things I cant think of right now.
But fact is, that the things I have listed really do contain those bacteria.
Another thing that could have helped me fighting off the bacteria is TOBI, which I have been inhaling for the past 10 years now.

To summarize it:
In the US it seems that there are no precautions concerning the prevention of bacterial infections. But if you have any bacteria its "bombs away!" with antibiotics.
Whereas in Germany you are on a constant TOBI therapy and are told to watch out (see list above). The aim is to do so little amount of Infusion Therapies as possible.

Now I'm not criticizing any method, its just what i have experienced. In my opinion it would be best to have a good mix of both methods. I think people should watch out for bacteria, but when it does happen that they get it, they should get an intense Infusion Therapy like they do in the US. Im saying that, because in Germany the Infusion Therapies are relatively weak in the dosage of antibiotics given to you compared to the dosage given to you in the US.

To come back to your question:
I cant really tell you what the key factor is, that helps me getting rid of the bacteria. As far as I know even in Germany I am an exception. I just tried to lay out how we approach the bacteria in germany, maybe that helped you out.

btw: I am not completely bacteria free. I do have aspergilles (sry again for possible mistakes) and some cind of fungus in my lungs. I lucked out so far on the really bad ones.

Oh, and I will probably have my first bronchioskopie(german word) soon, to be 100% sure about the bacterial cultures.

Greetings,
Alexander

 

[Alexander]

Well, in Germany we have a different philosophy concerning the handling on bacteria.
When I asked my CF doctor in Wisconsin if there was b.cepacia in the well water of my grandmothers house that I stayed in, he said he wouldnt know. I became curious and asked what
their "rules" were, to prevent any bacteria from entering the lungs. He said they dont have any. That really shocked me. Heres a list of what i am told to watch out for:
- open standing water is contaminated with pseudomonas 2hours after being exposed to air
example: When I open a bottle of water I have to drink it within 2hours
- run faucet for 2 minutes with hot water (to kill bacteria) before taking a bath or a shower
explanation: That is so the old water sitting in the pipes will be washed out properly
- dont eat onions, because layers contain b.cepacia and several other vegetables

There are a few other things I cant think of right now.
But fact is, that the things I have listed really do contain those bacteria.
Another thing that could have helped me fighting off the bacteria is TOBI, which I have been inhaling for the past 10 years now.

To summarize it:
In the US it seems that there are no precautions concerning the prevention of bacterial infections. But if you have any bacteria its "bombs away!" with antibiotics.
Whereas in Germany you are on a constant TOBI therapy and are told to watch out (see list above). The aim is to do so little amount of Infusion Therapies as possible.

Now I'm not criticizing any method, its just what i have experienced. In my opinion it would be best to have a good mix of both methods. I think people should watch out for bacteria, but when it does happen that they get it, they should get an intense Infusion Therapy like they do in the US. Im saying that, because in Germany the Infusion Therapies are relatively weak in the dosage of antibiotics given to you compared to the dosage given to you in the US.

To come back to your question:
I cant really tell you what the key factor is, that helps me getting rid of the bacteria. As far as I know even in Germany I am an exception. I just tried to lay out how we approach the bacteria in germany, maybe that helped you out.

btw: I am not completely bacteria free. I do have aspergilles (sry again for possible mistakes) and some cind of fungus in my lungs. I lucked out so far on the really bad ones.

Oh, and I will probably have my first bronchioskopie(german word) soon, to be 100% sure about the bacterial cultures.

Greetings,
Alexander

 

[Alexander]

Well, in Germany we have a different philosophy concerning the handling on bacteria.
When I asked my CF doctor in Wisconsin if there was b.cepacia in the well water of my grandmothers house that I stayed in, he said he wouldnt know. I became curious and asked what
their "rules" were, to prevent any bacteria from entering the lungs. He said they dont have any. That really shocked me. Heres a list of what i am told to watch out for:
- open standing water is contaminated with pseudomonas 2hours after being exposed to air
example: When I open a bottle of water I have to drink it within 2hours
- run faucet for 2 minutes with hot water (to kill bacteria) before taking a bath or a shower
explanation: That is so the old water sitting in the pipes will be washed out properly
- dont eat onions, because layers contain b.cepacia and several other vegetables

There are a few other things I cant think of right now.
But fact is, that the things I have listed really do contain those bacteria.
Another thing that could have helped me fighting off the bacteria is TOBI, which I have been inhaling for the past 10 years now.

To summarize it:
In the US it seems that there are no precautions concerning the prevention of bacterial infections. But if you have any bacteria its "bombs away!" with antibiotics.
Whereas in Germany you are on a constant TOBI therapy and are told to watch out (see list above). The aim is to do so little amount of Infusion Therapies as possible.

Now I'm not criticizing any method, its just what i have experienced. In my opinion it would be best to have a good mix of both methods. I think people should watch out for bacteria, but when it does happen that they get it, they should get an intense Infusion Therapy like they do in the US. Im saying that, because in Germany the Infusion Therapies are relatively weak in the dosage of antibiotics given to you compared to the dosage given to you in the US.

To come back to your question:
I cant really tell you what the key factor is, that helps me getting rid of the bacteria. As far as I know even in Germany I am an exception. I just tried to lay out how we approach the bacteria in germany, maybe that helped you out.

btw: I am not completely bacteria free. I do have aspergilles (sry again for possible mistakes) and some cind of fungus in my lungs. I lucked out so far on the really bad ones.

Oh, and I will probably have my first bronchioskopie(german word) soon, to be 100% sure about the bacterial cultures.

Greetings,
Alexander

 

[Alexander]

Well, in Germany we have a different philosophy concerning the handling on bacteria.
<br />When I asked my CF doctor in Wisconsin if there was b.cepacia in the well water of my grandmothers house that I stayed in, he said he wouldnt know. I became curious and asked what
<br />their "rules" were, to prevent any bacteria from entering the lungs. He said they dont have any. That really shocked me. Heres a list of what i am told to watch out for:
<br />- open standing water is contaminated with pseudomonas 2hours after being exposed to air
<br /> example: When I open a bottle of water I have to drink it within 2hours
<br />- run faucet for 2 minutes with hot water (to kill bacteria) before taking a bath or a shower
<br /> explanation: That is so the old water sitting in the pipes will be washed out properly
<br />- dont eat onions, because layers contain b.cepacia and several other vegetables
<br />
<br />There are a few other things I cant think of right now.
<br />But fact is, that the things I have listed really do contain those bacteria.
<br />Another thing that could have helped me fighting off the bacteria is TOBI, which I have been inhaling for the past 10 years now.
<br />
<br />To summarize it:
<br />In the US it seems that there are no precautions concerning the prevention of bacterial infections. But if you have any bacteria its "bombs away!" with antibiotics.
<br />Whereas in Germany you are on a constant TOBI therapy and are told to watch out (see list above). The aim is to do so little amount of Infusion Therapies as possible.
<br />
<br />Now I'm not criticizing any method, its just what i have experienced. In my opinion it would be best to have a good mix of both methods. I think people should watch out for bacteria, but when it does happen that they get it, they should get an intense Infusion Therapy like they do in the US. Im saying that, because in Germany the Infusion Therapies are relatively weak in the dosage of antibiotics given to you compared to the dosage given to you in the US.
<br />
<br />To come back to your question:
<br />I cant really tell you what the key factor is, that helps me getting rid of the bacteria. As far as I know even in Germany I am an exception. I just tried to lay out how we approach the bacteria in germany, maybe that helped you out.
<br />
<br />btw: I am not completely bacteria free. I do have aspergilles (sry again for possible mistakes) and some cind of fungus in my lungs. I lucked out so far on the really bad ones.
<br />
<br />Oh, and I will probably have my first bronchioskopie(german word) soon, to be 100% sure about the bacterial cultures.
<br />
<br />Greetings,
<br />Alexander