I need opinions...

[Mommy2Zeke]

Ok. You all know my dilemma by now. I've only had the basic panel run. I have not had the Ambry amplified run. Basic panel shows I have on Df508. I had a sweat test today that came back with a 22. I know sweat tests aren't really definitive answers like once thought, but I really don't know if I should bother pursuing a CF diagnosis or see if a doctor will at least consider treating me with CPT, etc.

 

[Mommy2Zeke]

Ok. You all know my dilemma by now. I've only had the basic panel run. I have not had the Ambry amplified run. Basic panel shows I have on Df508. I had a sweat test today that came back with a 22. I know sweat tests aren't really definitive answers like once thought, but I really don't know if I should bother pursuing a CF diagnosis or see if a doctor will at least consider treating me with CPT, etc.

 

[Mommy2Zeke]

Ok. You all know my dilemma by now. I've only had the basic panel run. I have not had the Ambry amplified run. Basic panel shows I have on Df508. I had a sweat test today that came back with a 22. I know sweat tests aren't really definitive answers like once thought, but I really don't know if I should bother pursuing a CF diagnosis or see if a doctor will at least consider treating me with CPT, etc.

 

[Mommy2Zeke]

Ok. You all know my dilemma by now. I've only had the basic panel run. I have not had the Ambry amplified run. Basic panel shows I have on Df508. I had a sweat test today that came back with a 22. I know sweat tests aren't really definitive answers like once thought, but I really don't know if I should bother pursuing a CF diagnosis or see if a doctor will at least consider treating me with CPT, etc.

 

[Mommy2Zeke]

Ok. You all know my dilemma by now. I've only had the basic panel run. I have not had the Ambry amplified run. Basic panel shows I have on Df508. I had a sweat test today that came back with a 22. I know sweat tests aren't really definitive answers like once thought, but I really don't know if I should bother pursuing a CF diagnosis or see if a doctor will at least consider treating me with CPT, etc.

 

[NYCLawGirl]

It's up to you if you want the amplified panel. Personally I would go for it -- I think peace of mind and a correct diagnosis (even negative) is worth whatever sacrifices might be necessary to cover the cost. Keep in mind, as well, that it's not surprising your sweat test was negative. Most people diagnosed as adults have negative or borderline sweat tests -- if you had a more "classic" presentation with typically high sweat chloride levels, you most likely would have been diagnosed earlier. I hate to even open this can of worms, but if you have CF it is almost guaranteed that one of your mutations will have an "atypical" presentation, esp. since you're pancreatic sufficient. So frankly I'm not sure why they thought a sweat test would be useful at all.

As for "treatment as if," know that it's hard. CF meds are often pretty specific to the disease, particularly pulmozyme and HTS, and of course our clinics are specialty doctors. So insurance companies tend to balk unless there is an official diagnosis. CPT, on the other hand, is easy and doesn't require a doctor's prescription. Personally I think everyone with a history of severe lung infection should be taught manual CPT. And if you have a vest for your son it shouldn't be too expensive to purchase and adult-sized vest for yourself. Again, I don't see how that could be detrimental to your health, CF or no.

Good luck!

 

[NYCLawGirl]

It's up to you if you want the amplified panel. Personally I would go for it -- I think peace of mind and a correct diagnosis (even negative) is worth whatever sacrifices might be necessary to cover the cost. Keep in mind, as well, that it's not surprising your sweat test was negative. Most people diagnosed as adults have negative or borderline sweat tests -- if you had a more "classic" presentation with typically high sweat chloride levels, you most likely would have been diagnosed earlier. I hate to even open this can of worms, but if you have CF it is almost guaranteed that one of your mutations will have an "atypical" presentation, esp. since you're pancreatic sufficient. So frankly I'm not sure why they thought a sweat test would be useful at all.

As for "treatment as if," know that it's hard. CF meds are often pretty specific to the disease, particularly pulmozyme and HTS, and of course our clinics are specialty doctors. So insurance companies tend to balk unless there is an official diagnosis. CPT, on the other hand, is easy and doesn't require a doctor's prescription. Personally I think everyone with a history of severe lung infection should be taught manual CPT. And if you have a vest for your son it shouldn't be too expensive to purchase and adult-sized vest for yourself. Again, I don't see how that could be detrimental to your health, CF or no.

Good luck!

 

[NYCLawGirl]

It's up to you if you want the amplified panel. Personally I would go for it -- I think peace of mind and a correct diagnosis (even negative) is worth whatever sacrifices might be necessary to cover the cost. Keep in mind, as well, that it's not surprising your sweat test was negative. Most people diagnosed as adults have negative or borderline sweat tests -- if you had a more "classic" presentation with typically high sweat chloride levels, you most likely would have been diagnosed earlier. I hate to even open this can of worms, but if you have CF it is almost guaranteed that one of your mutations will have an "atypical" presentation, esp. since you're pancreatic sufficient. So frankly I'm not sure why they thought a sweat test would be useful at all.

As for "treatment as if," know that it's hard. CF meds are often pretty specific to the disease, particularly pulmozyme and HTS, and of course our clinics are specialty doctors. So insurance companies tend to balk unless there is an official diagnosis. CPT, on the other hand, is easy and doesn't require a doctor's prescription. Personally I think everyone with a history of severe lung infection should be taught manual CPT. And if you have a vest for your son it shouldn't be too expensive to purchase and adult-sized vest for yourself. Again, I don't see how that could be detrimental to your health, CF or no.

Good luck!

 

[NYCLawGirl]

It's up to you if you want the amplified panel. Personally I would go for it -- I think peace of mind and a correct diagnosis (even negative) is worth whatever sacrifices might be necessary to cover the cost. Keep in mind, as well, that it's not surprising your sweat test was negative. Most people diagnosed as adults have negative or borderline sweat tests -- if you had a more "classic" presentation with typically high sweat chloride levels, you most likely would have been diagnosed earlier. I hate to even open this can of worms, but if you have CF it is almost guaranteed that one of your mutations will have an "atypical" presentation, esp. since you're pancreatic sufficient. So frankly I'm not sure why they thought a sweat test would be useful at all.

As for "treatment as if," know that it's hard. CF meds are often pretty specific to the disease, particularly pulmozyme and HTS, and of course our clinics are specialty doctors. So insurance companies tend to balk unless there is an official diagnosis. CPT, on the other hand, is easy and doesn't require a doctor's prescription. Personally I think everyone with a history of severe lung infection should be taught manual CPT. And if you have a vest for your son it shouldn't be too expensive to purchase and adult-sized vest for yourself. Again, I don't see how that could be detrimental to your health, CF or no.

Good luck!

 

[NYCLawGirl]

It's up to you if you want the amplified panel. Personally I would go for it -- I think peace of mind and a correct diagnosis (even negative) is worth whatever sacrifices might be necessary to cover the cost. Keep in mind, as well, that it's not surprising your sweat test was negative. Most people diagnosed as adults have negative or borderline sweat tests -- if you had a more "classic" presentation with typically high sweat chloride levels, you most likely would have been diagnosed earlier. I hate to even open this can of worms, but if you have CF it is almost guaranteed that one of your mutations will have an "atypical" presentation, esp. since you're pancreatic sufficient. So frankly I'm not sure why they thought a sweat test would be useful at all.
<br />
<br />As for "treatment as if," know that it's hard. CF meds are often pretty specific to the disease, particularly pulmozyme and HTS, and of course our clinics are specialty doctors. So insurance companies tend to balk unless there is an official diagnosis. CPT, on the other hand, is easy and doesn't require a doctor's prescription. Personally I think everyone with a history of severe lung infection should be taught manual CPT. And if you have a vest for your son it shouldn't be too expensive to purchase and adult-sized vest for yourself. Again, I don't see how that could be detrimental to your health, CF or no.
<br />
<br />Good luck!

 

[Melissa75]

I think I posted to you before, so I apologize if this is a repeat. In my opinion, you need to go to a pulmonologist if you have daily sputum production for more than three months and recurrent infections. You will need a high resolution chest CT Scan to determine whether you have bronchiectasis, chronic bronchitis or asthma/emphysema. A sinus CT can also help determine if your chest cough is caused by post nasal drip rather than or in addition to lung inflammation.

My X-rays look normal sometimes, so if you've had normal x-rays that doesn't mean much. (My CT scans do not look normal.)

I understand that you want to get to the bottom of the CF question, so I would get the Amplified panel if I were you. But 50% of people with bronchiectasis do not have CF (I would love to know what % really do, but just don't know it), but plenty have other conditions or no clear explanation for why they present with lung damage.

The two difference you would have btw bronchiectasis care vs CF care, as far as I can tell, are 1) you would not likely do pulmozyme because a study showed it did not help people with non-CF bronchiectasis. That said, I know of a few non-CFers who are on it, and 2) your care might not be as well coordinated unless you went to a CF Center and depending on your insurance, you may not get coverage for the Vest.

Because you already go to a CF center for your son, you should go there for your lung disease too, if possible and if that is what you have. Finding a non-CF pulmonologist who is knowledgeable and interested in bronchiectasis is not a no-brainer. AND the office staff is CRUCIAL--they have to understand that you should not come in every time you need a new antibiotic or you'd be there ever two weeks. And they have to work with you about faxing slips to labs and giving you extra sputum cups to have handy when you get an exacerbation. Some office people are downright mean when you seem to be asking for these "special favors." I suspect that is not the case at a CF center...

And I agree wholeheartedly with Piper that you can buy the vest part of the Vest, and people who are pneumonia- and bronchitis-prone should learn postural drainage and find a family member to learn CPT if possible.

 

[Melissa75]

I think I posted to you before, so I apologize if this is a repeat. In my opinion, you need to go to a pulmonologist if you have daily sputum production for more than three months and recurrent infections. You will need a high resolution chest CT Scan to determine whether you have bronchiectasis, chronic bronchitis or asthma/emphysema. A sinus CT can also help determine if your chest cough is caused by post nasal drip rather than or in addition to lung inflammation.

My X-rays look normal sometimes, so if you've had normal x-rays that doesn't mean much. (My CT scans do not look normal.)

I understand that you want to get to the bottom of the CF question, so I would get the Amplified panel if I were you. But 50% of people with bronchiectasis do not have CF (I would love to know what % really do, but just don't know it), but plenty have other conditions or no clear explanation for why they present with lung damage.

The two difference you would have btw bronchiectasis care vs CF care, as far as I can tell, are 1) you would not likely do pulmozyme because a study showed it did not help people with non-CF bronchiectasis. That said, I know of a few non-CFers who are on it, and 2) your care might not be as well coordinated unless you went to a CF Center and depending on your insurance, you may not get coverage for the Vest.

Because you already go to a CF center for your son, you should go there for your lung disease too, if possible and if that is what you have. Finding a non-CF pulmonologist who is knowledgeable and interested in bronchiectasis is not a no-brainer. AND the office staff is CRUCIAL--they have to understand that you should not come in every time you need a new antibiotic or you'd be there ever two weeks. And they have to work with you about faxing slips to labs and giving you extra sputum cups to have handy when you get an exacerbation. Some office people are downright mean when you seem to be asking for these "special favors." I suspect that is not the case at a CF center...

And I agree wholeheartedly with Piper that you can buy the vest part of the Vest, and people who are pneumonia- and bronchitis-prone should learn postural drainage and find a family member to learn CPT if possible.

 

[Melissa75]

I think I posted to you before, so I apologize if this is a repeat. In my opinion, you need to go to a pulmonologist if you have daily sputum production for more than three months and recurrent infections. You will need a high resolution chest CT Scan to determine whether you have bronchiectasis, chronic bronchitis or asthma/emphysema. A sinus CT can also help determine if your chest cough is caused by post nasal drip rather than or in addition to lung inflammation.

My X-rays look normal sometimes, so if you've had normal x-rays that doesn't mean much. (My CT scans do not look normal.)

I understand that you want to get to the bottom of the CF question, so I would get the Amplified panel if I were you. But 50% of people with bronchiectasis do not have CF (I would love to know what % really do, but just don't know it), but plenty have other conditions or no clear explanation for why they present with lung damage.

The two difference you would have btw bronchiectasis care vs CF care, as far as I can tell, are 1) you would not likely do pulmozyme because a study showed it did not help people with non-CF bronchiectasis. That said, I know of a few non-CFers who are on it, and 2) your care might not be as well coordinated unless you went to a CF Center and depending on your insurance, you may not get coverage for the Vest.

Because you already go to a CF center for your son, you should go there for your lung disease too, if possible and if that is what you have. Finding a non-CF pulmonologist who is knowledgeable and interested in bronchiectasis is not a no-brainer. AND the office staff is CRUCIAL--they have to understand that you should not come in every time you need a new antibiotic or you'd be there ever two weeks. And they have to work with you about faxing slips to labs and giving you extra sputum cups to have handy when you get an exacerbation. Some office people are downright mean when you seem to be asking for these "special favors." I suspect that is not the case at a CF center...

And I agree wholeheartedly with Piper that you can buy the vest part of the Vest, and people who are pneumonia- and bronchitis-prone should learn postural drainage and find a family member to learn CPT if possible.

 

[Melissa75]

I think I posted to you before, so I apologize if this is a repeat. In my opinion, you need to go to a pulmonologist if you have daily sputum production for more than three months and recurrent infections. You will need a high resolution chest CT Scan to determine whether you have bronchiectasis, chronic bronchitis or asthma/emphysema. A sinus CT can also help determine if your chest cough is caused by post nasal drip rather than or in addition to lung inflammation.

My X-rays look normal sometimes, so if you've had normal x-rays that doesn't mean much. (My CT scans do not look normal.)

I understand that you want to get to the bottom of the CF question, so I would get the Amplified panel if I were you. But 50% of people with bronchiectasis do not have CF (I would love to know what % really do, but just don't know it), but plenty have other conditions or no clear explanation for why they present with lung damage.

The two difference you would have btw bronchiectasis care vs CF care, as far as I can tell, are 1) you would not likely do pulmozyme because a study showed it did not help people with non-CF bronchiectasis. That said, I know of a few non-CFers who are on it, and 2) your care might not be as well coordinated unless you went to a CF Center and depending on your insurance, you may not get coverage for the Vest.

Because you already go to a CF center for your son, you should go there for your lung disease too, if possible and if that is what you have. Finding a non-CF pulmonologist who is knowledgeable and interested in bronchiectasis is not a no-brainer. AND the office staff is CRUCIAL--they have to understand that you should not come in every time you need a new antibiotic or you'd be there ever two weeks. And they have to work with you about faxing slips to labs and giving you extra sputum cups to have handy when you get an exacerbation. Some office people are downright mean when you seem to be asking for these "special favors." I suspect that is not the case at a CF center...

And I agree wholeheartedly with Piper that you can buy the vest part of the Vest, and people who are pneumonia- and bronchitis-prone should learn postural drainage and find a family member to learn CPT if possible.

 

[Melissa75]

I think I posted to you before, so I apologize if this is a repeat. In my opinion, you need to go to a pulmonologist if you have daily sputum production for more than three months and recurrent infections. You will need a high resolution chest CT Scan to determine whether you have bronchiectasis, chronic bronchitis or asthma/emphysema. A sinus CT can also help determine if your chest cough is caused by post nasal drip rather than or in addition to lung inflammation.
<br />
<br />My X-rays look normal sometimes, so if you've had normal x-rays that doesn't mean much. (My CT scans do not look normal.)
<br />
<br />I understand that you want to get to the bottom of the CF question, so I would get the Amplified panel if I were you. But 50% of people with bronchiectasis do not have CF (I would love to know what % really do, but just don't know it), but plenty have other conditions or no clear explanation for why they present with lung damage.
<br />
<br />The two difference you would have btw bronchiectasis care vs CF care, as far as I can tell, are 1) you would not likely do pulmozyme because a study showed it did not help people with non-CF bronchiectasis. That said, I know of a few non-CFers who are on it, and 2) your care might not be as well coordinated unless you went to a CF Center and depending on your insurance, you may not get coverage for the Vest.
<br />
<br />Because you already go to a CF center for your son, you should go there for your lung disease too, if possible and if that is what you have. Finding a non-CF pulmonologist who is knowledgeable and interested in bronchiectasis is not a no-brainer. AND the office staff is CRUCIAL--they have to understand that you should not come in every time you need a new antibiotic or you'd be there ever two weeks. And they have to work with you about faxing slips to labs and giving you extra sputum cups to have handy when you get an exacerbation. Some office people are downright mean when you seem to be asking for these "special favors." I suspect that is not the case at a CF center...
<br />
<br />And I agree wholeheartedly with Piper that you can buy the vest part of the Vest, and people who are pneumonia- and bronchitis-prone should learn postural drainage and find a family member to learn CPT if possible.