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lots of questions

B

babyluke

New member
I was just wondering, could anyone suggest a good book or some other reading material that I can refer to? They gave us some info. at clinic and I have been on several websites. I keep reading about cultures and fecal fat analysis and mutations and I don't understand what it all means. I would love to have some type of comprehensive book that is not overly simpified (sometimes it feels like they are only covering the basis; what the general public should know about CF and I want more), but that is still able to be understood by someone without a PHD. Any suggestions?
 
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babyluke

New member
I was just wondering, could anyone suggest a good book or some other reading material that I can refer to? They gave us some info. at clinic and I have been on several websites. I keep reading about cultures and fecal fat analysis and mutations and I don't understand what it all means. I would love to have some type of comprehensive book that is not overly simpified (sometimes it feels like they are only covering the basis; what the general public should know about CF and I want more), but that is still able to be understood by someone without a PHD. Any suggestions?
 
B

babyluke

New member
I was just wondering, could anyone suggest a good book or some other reading material that I can refer to? They gave us some info. at clinic and I have been on several websites. I keep reading about cultures and fecal fat analysis and mutations and I don't understand what it all means. I would love to have some type of comprehensive book that is not overly simpified (sometimes it feels like they are only covering the basis; what the general public should know about CF and I want more), but that is still able to be understood by someone without a PHD. Any suggestions?
 
B

babyluke

New member
I was just wondering, could anyone suggest a good book or some other reading material that I can refer to? They gave us some info. at clinic and I have been on several websites. I keep reading about cultures and fecal fat analysis and mutations and I don't understand what it all means. I would love to have some type of comprehensive book that is not overly simpified (sometimes it feels like they are only covering the basis; what the general public should know about CF and I want more), but that is still able to be understood by someone without a PHD. Any suggestions?
 
B

babyluke

New member
I was just wondering, could anyone suggest a good book or some other reading material that I can refer to? They gave us some info. at clinic and I have been on several websites. I keep reading about cultures and fecal fat analysis and mutations and I don't understand what it all means. I would love to have some type of comprehensive book that is not overly simpified (sometimes it feels like they are only covering the basis; what the general public should know about CF and I want more), but that is still able to be understood by someone without a PHD. Any suggestions?
 
K

ktsmom

New member
One of the books our speciality CF pharmacy gave us was <i>Cystic Fibrosis Third Edition A Guide For Patient and Family</i> by David M. Orenstein; it was compliments of Axcan Pharma.

I see it available at Amazon.com but it is $36.46. See if your pharmacy can get it free for you like ours did. I'm going to look for some reliable links now. Hopefully I'll be posting something else for you in a second.
 
K

ktsmom

New member
One of the books our speciality CF pharmacy gave us was <i>Cystic Fibrosis Third Edition A Guide For Patient and Family</i> by David M. Orenstein; it was compliments of Axcan Pharma.

I see it available at Amazon.com but it is $36.46. See if your pharmacy can get it free for you like ours did. I'm going to look for some reliable links now. Hopefully I'll be posting something else for you in a second.
 
K

ktsmom

New member
One of the books our speciality CF pharmacy gave us was <i>Cystic Fibrosis Third Edition A Guide For Patient and Family</i> by David M. Orenstein; it was compliments of Axcan Pharma.

I see it available at Amazon.com but it is $36.46. See if your pharmacy can get it free for you like ours did. I'm going to look for some reliable links now. Hopefully I'll be posting something else for you in a second.
 
K

ktsmom

New member
One of the books our speciality CF pharmacy gave us was <i>Cystic Fibrosis Third Edition A Guide For Patient and Family</i> by David M. Orenstein; it was compliments of Axcan Pharma.

I see it available at Amazon.com but it is $36.46. See if your pharmacy can get it free for you like ours did. I'm going to look for some reliable links now. Hopefully I'll be posting something else for you in a second.
 
K

ktsmom

New member
One of the books our speciality CF pharmacy gave us was <i>Cystic Fibrosis Third Edition A Guide For Patient and Family</i> by David M. Orenstein; it was compliments of Axcan Pharma.

I see it available at Amazon.com but it is $36.46. See if your pharmacy can get it free for you like ours did. I'm going to look for some reliable links now. Hopefully I'll be posting something else for you in a second.
 
K

ktsmom

New member
Disclaimer - no, you don't have to have a PhD to understand all of this stuff but there is SO much to adjust to, and you can only absorb so much info at one time!

Nutrition (including infants):
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/NutritionThroughLife/Nutrition%20and%20CF%20-%20Changes%20Through%20Life%2002-06.pdf
">http://www.cff.org/UploadedFil...gh%20Life%2002-06.pdf
</a>
Cultures (referring to throat cultures, for those that are not producing sputum, and sputum culture) for CF-specific bugs:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Germs/WhatYouShouldKnow/WhatYouShouldKnowAboutGerms.pdf
">http://www.cff.org/UploadedFil...uldKnowAboutGerms.pdf
</a>
Mutations (not very specific regarding each mutation, but an overview of the genetics):
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/AboutCF/Testing/">http://www.cff.org/AboutCF/Testing/</a>
 
K

ktsmom

New member
Disclaimer - no, you don't have to have a PhD to understand all of this stuff but there is SO much to adjust to, and you can only absorb so much info at one time!

Nutrition (including infants):
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/NutritionThroughLife/Nutrition%20and%20CF%20-%20Changes%20Through%20Life%2002-06.pdf
">http://www.cff.org/UploadedFil...gh%20Life%2002-06.pdf
</a>
Cultures (referring to throat cultures, for those that are not producing sputum, and sputum culture) for CF-specific bugs:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Germs/WhatYouShouldKnow/WhatYouShouldKnowAboutGerms.pdf
">http://www.cff.org/UploadedFil...uldKnowAboutGerms.pdf
</a>
Mutations (not very specific regarding each mutation, but an overview of the genetics):
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/AboutCF/Testing/">http://www.cff.org/AboutCF/Testing/</a>
 
K

ktsmom

New member
Disclaimer - no, you don't have to have a PhD to understand all of this stuff but there is SO much to adjust to, and you can only absorb so much info at one time!

Nutrition (including infants):
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/NutritionThroughLife/Nutrition%20and%20CF%20-%20Changes%20Through%20Life%2002-06.pdf
">http://www.cff.org/UploadedFil...gh%20Life%2002-06.pdf
</a>
Cultures (referring to throat cultures, for those that are not producing sputum, and sputum culture) for CF-specific bugs:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Germs/WhatYouShouldKnow/WhatYouShouldKnowAboutGerms.pdf
">http://www.cff.org/UploadedFil...uldKnowAboutGerms.pdf
</a>
Mutations (not very specific regarding each mutation, but an overview of the genetics):
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/AboutCF/Testing/">http://www.cff.org/AboutCF/Testing/</a>
 
K

ktsmom

New member
Disclaimer - no, you don't have to have a PhD to understand all of this stuff but there is SO much to adjust to, and you can only absorb so much info at one time!

Nutrition (including infants):
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/NutritionThroughLife/Nutrition%20and%20CF%20-%20Changes%20Through%20Life%2002-06.pdf
">http://www.cff.org/UploadedFil...gh%20Life%2002-06.pdf
</a>
Cultures (referring to throat cultures, for those that are not producing sputum, and sputum culture) for CF-specific bugs:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Germs/WhatYouShouldKnow/WhatYouShouldKnowAboutGerms.pdf
">http://www.cff.org/UploadedFil...uldKnowAboutGerms.pdf
</a>
Mutations (not very specific regarding each mutation, but an overview of the genetics):
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/AboutCF/Testing/">http://www.cff.org/AboutCF/Testing/</a>
 
K

ktsmom

New member
Disclaimer - no, you don't have to have a PhD to understand all of this stuff but there is SO much to adjust to, and you can only absorb so much info at one time!

Nutrition (including infants):
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/NutritionThroughLife/Nutrition%20and%20CF%20-%20Changes%20Through%20Life%2002-06.pdf
">http://www.cff.org/UploadedFil...gh%20Life%2002-06.pdf
</a>
Cultures (referring to throat cultures, for those that are not producing sputum, and sputum culture) for CF-specific bugs:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Germs/WhatYouShouldKnow/WhatYouShouldKnowAboutGerms.pdf
">http://www.cff.org/UploadedFil...uldKnowAboutGerms.pdf
</a>
Mutations (not very specific regarding each mutation, but an overview of the genetics):
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/AboutCF/Testing/">http://www.cff.org/AboutCF/Testing/</a>
 
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