Bronchiectasis

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saveferris2009

New member
so so so many of us adult CFer's were almost completely a-symptomatic as children. cough here and there, but rarely hospitalizations....

but if you don't treat aggressively when you're healthy, it's tough to get ahead of infections and decline when the inevitable symptoms arise.

CF progresses.... even in "a-typicals" or "late diagnoses." this site is riddled with examples.

it truly makes me sad to think that your kids could be suffering undue permanent lung damage because some doctor threw out this adjective of "a-typical" and subsequently dampening the sense of urgency to treat these CFer's aggressively.

many have told me to let it go with this "a-typical" debate but yours is a prime example of why i find it so harmful - the adjective is such a strong impetus to let off the gas on aggressive care. not your fault, don't get me wrong. i think the doc is irresponsible. your kids are just innocent by standers and it breaks my heart. they deserve just the same quality, aggressive care as every other CFer.

take care. i wish your kids all the best.

check out this article if you haven't read it already.... <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact?currentPage=1">http://www.newyorker.com/archi...6fa_fact?currentPage=1</a>
 
S

saveferris2009

New member
so so so many of us adult CFer's were almost completely a-symptomatic as children. cough here and there, but rarely hospitalizations....

but if you don't treat aggressively when you're healthy, it's tough to get ahead of infections and decline when the inevitable symptoms arise.

CF progresses.... even in "a-typicals" or "late diagnoses." this site is riddled with examples.

it truly makes me sad to think that your kids could be suffering undue permanent lung damage because some doctor threw out this adjective of "a-typical" and subsequently dampening the sense of urgency to treat these CFer's aggressively.

many have told me to let it go with this "a-typical" debate but yours is a prime example of why i find it so harmful - the adjective is such a strong impetus to let off the gas on aggressive care. not your fault, don't get me wrong. i think the doc is irresponsible. your kids are just innocent by standers and it breaks my heart. they deserve just the same quality, aggressive care as every other CFer.

take care. i wish your kids all the best.

check out this article if you haven't read it already.... <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact?currentPage=1">http://www.newyorker.com/archi...6fa_fact?currentPage=1</a>
 
S

saveferris2009

New member
so so so many of us adult CFer's were almost completely a-symptomatic as children. cough here and there, but rarely hospitalizations....

but if you don't treat aggressively when you're healthy, it's tough to get ahead of infections and decline when the inevitable symptoms arise.

CF progresses.... even in "a-typicals" or "late diagnoses." this site is riddled with examples.

it truly makes me sad to think that your kids could be suffering undue permanent lung damage because some doctor threw out this adjective of "a-typical" and subsequently dampening the sense of urgency to treat these CFer's aggressively.

many have told me to let it go with this "a-typical" debate but yours is a prime example of why i find it so harmful - the adjective is such a strong impetus to let off the gas on aggressive care. not your fault, don't get me wrong. i think the doc is irresponsible. your kids are just innocent by standers and it breaks my heart. they deserve just the same quality, aggressive care as every other CFer.

take care. i wish your kids all the best.

check out this article if you haven't read it already.... <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact?currentPage=1">http://www.newyorker.com/archi...6fa_fact?currentPage=1</a>
 
S

saveferris2009

New member
so so so many of us adult CFer's were almost completely a-symptomatic as children. cough here and there, but rarely hospitalizations....

but if you don't treat aggressively when you're healthy, it's tough to get ahead of infections and decline when the inevitable symptoms arise.

CF progresses.... even in "a-typicals" or "late diagnoses." this site is riddled with examples.

it truly makes me sad to think that your kids could be suffering undue permanent lung damage because some doctor threw out this adjective of "a-typical" and subsequently dampening the sense of urgency to treat these CFer's aggressively.

many have told me to let it go with this "a-typical" debate but yours is a prime example of why i find it so harmful - the adjective is such a strong impetus to let off the gas on aggressive care. not your fault, don't get me wrong. i think the doc is irresponsible. your kids are just innocent by standers and it breaks my heart. they deserve just the same quality, aggressive care as every other CFer.

take care. i wish your kids all the best.

check out this article if you haven't read it already.... <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact?currentPage=1">http://www.newyorker.com/archi...6fa_fact?currentPage=1</a>
 
S

saveferris2009

New member
so so so many of us adult CFer's were almost completely a-symptomatic as children. cough here and there, but rarely hospitalizations....
<br />
<br />but if you don't treat aggressively when you're healthy, it's tough to get ahead of infections and decline when the inevitable symptoms arise.
<br />
<br />CF progresses.... even in "a-typicals" or "late diagnoses." this site is riddled with examples.
<br />
<br />it truly makes me sad to think that your kids could be suffering undue permanent lung damage because some doctor threw out this adjective of "a-typical" and subsequently dampening the sense of urgency to treat these CFer's aggressively.
<br />
<br />many have told me to let it go with this "a-typical" debate but yours is a prime example of why i find it so harmful - the adjective is such a strong impetus to let off the gas on aggressive care. not your fault, don't get me wrong. i think the doc is irresponsible. your kids are just innocent by standers and it breaks my heart. they deserve just the same quality, aggressive care as every other CFer.
<br />
<br />take care. i wish your kids all the best.
<br />
<br />check out this article if you haven't read it already.... <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact?currentPage=1">http://www.newyorker.com/archi...6fa_fact?currentPage=1</a>
 
J

Juliet

New member
I was diagnosed with bronchectasis as a teenager. They didn't figure out I had CF until I was 43, and only then by genetic testing. I had repeated lung infections most of my life. About 2 years ago I started allergy treatments (desensitizing). Those helped considerably, but still I coughed a lot. In the past year with more aggressive CF treatments (daily saline, pulmozyme) and a round of IVs (to finally get the staph I've been culturing since the 80s under control) I've hardly got a cough (other than deliberate airway clearance in the AM). I had a few other things going on too (MAC) which is now under control too.

As others have stated keeping the allergies / asthma and other non-infectious components at bay are very important. ~Juliet
 
J

Juliet

New member
I was diagnosed with bronchectasis as a teenager. They didn't figure out I had CF until I was 43, and only then by genetic testing. I had repeated lung infections most of my life. About 2 years ago I started allergy treatments (desensitizing). Those helped considerably, but still I coughed a lot. In the past year with more aggressive CF treatments (daily saline, pulmozyme) and a round of IVs (to finally get the staph I've been culturing since the 80s under control) I've hardly got a cough (other than deliberate airway clearance in the AM). I had a few other things going on too (MAC) which is now under control too.

As others have stated keeping the allergies / asthma and other non-infectious components at bay are very important. ~Juliet
 
J

Juliet

New member
I was diagnosed with bronchectasis as a teenager. They didn't figure out I had CF until I was 43, and only then by genetic testing. I had repeated lung infections most of my life. About 2 years ago I started allergy treatments (desensitizing). Those helped considerably, but still I coughed a lot. In the past year with more aggressive CF treatments (daily saline, pulmozyme) and a round of IVs (to finally get the staph I've been culturing since the 80s under control) I've hardly got a cough (other than deliberate airway clearance in the AM). I had a few other things going on too (MAC) which is now under control too.

As others have stated keeping the allergies / asthma and other non-infectious components at bay are very important. ~Juliet
 
J

Juliet

New member
I was diagnosed with bronchectasis as a teenager. They didn't figure out I had CF until I was 43, and only then by genetic testing. I had repeated lung infections most of my life. About 2 years ago I started allergy treatments (desensitizing). Those helped considerably, but still I coughed a lot. In the past year with more aggressive CF treatments (daily saline, pulmozyme) and a round of IVs (to finally get the staph I've been culturing since the 80s under control) I've hardly got a cough (other than deliberate airway clearance in the AM). I had a few other things going on too (MAC) which is now under control too.

As others have stated keeping the allergies / asthma and other non-infectious components at bay are very important. ~Juliet
 
J

Juliet

New member
I was diagnosed with bronchectasis as a teenager. They didn't figure out I had CF until I was 43, and only then by genetic testing. I had repeated lung infections most of my life. About 2 years ago I started allergy treatments (desensitizing). Those helped considerably, but still I coughed a lot. In the past year with more aggressive CF treatments (daily saline, pulmozyme) and a round of IVs (to finally get the staph I've been culturing since the 80s under control) I've hardly got a cough (other than deliberate airway clearance in the AM). I had a few other things going on too (MAC) which is now under control too.
<br />
<br />As others have stated keeping the allergies / asthma and other non-infectious components at bay are very important. ~Juliet
 
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