DF508 carriers and bad CF symptoms

mom2lillian · May 17, 2008

hello

while Lauren brings up good points about other diseases it could be, my frame of reference is a bit difference having experience with a late diagnosis and having met and talked with others in the same boat as your mom. I think it makes sense to get to the bottom of this but with a family history of CF that, to me, is the most logical place to start the elimination process. So, here is my 2 cents.

she needs to have an ambry full panel, insurance cost $3100 but out pocket with payment plan is $1400. The other option since you know what mutation you have is ambry can test for one mutation for like $200 so that would be a good place to start if you are having trouble from the insurance company. If you can get her to a cf clinic or just talk with them they can help you get justification for the test. A normal sweat test does NOT rule out cf, it is merely a good way to prove CF never to rule out these days.

The director of my cf clinic had a son die in the 70's of CF, she always had occasional bouts cough in winter, as she got older 50's she would get occasional pneumonia, twice she did cultures and it showed PA among others so they had a feeling cf was a possibility since it is very rare for non-CF'ers to have chronic PA cultures. But had she not been in that world noone would ever have thought of it, who looks at an overweight 50+ year old woman and goes hmm lets test for CF? Anyway, they ran a gene test a couple times when head CF doc bugged her and it always showed her 508 and nothing else. Well at the ripe old age of 61 she got a bad bit pneumonia, this was about 4 years ago, they sent off a genetic test for 'fun' and bammo up showed her 2nd mutation, yes she has CF. It is not unheard of.

mom2lillian · May 17, 2008

hello

while Lauren brings up good points about other diseases it could be, my frame of reference is a bit difference having experience with a late diagnosis and having met and talked with others in the same boat as your mom. I think it makes sense to get to the bottom of this but with a family history of CF that, to me, is the most logical place to start the elimination process. So, here is my 2 cents.

she needs to have an ambry full panel, insurance cost $3100 but out pocket with payment plan is $1400. The other option since you know what mutation you have is ambry can test for one mutation for like $200 so that would be a good place to start if you are having trouble from the insurance company. If you can get her to a cf clinic or just talk with them they can help you get justification for the test. A normal sweat test does NOT rule out cf, it is merely a good way to prove CF never to rule out these days.

The director of my cf clinic had a son die in the 70's of CF, she always had occasional bouts cough in winter, as she got older 50's she would get occasional pneumonia, twice she did cultures and it showed PA among others so they had a feeling cf was a possibility since it is very rare for non-CF'ers to have chronic PA cultures. But had she not been in that world noone would ever have thought of it, who looks at an overweight 50+ year old woman and goes hmm lets test for CF? Anyway, they ran a gene test a couple times when head CF doc bugged her and it always showed her 508 and nothing else. Well at the ripe old age of 61 she got a bad bit pneumonia, this was about 4 years ago, they sent off a genetic test for 'fun' and bammo up showed her 2nd mutation, yes she has CF. It is not unheard of.

mom2lillian · May 17, 2008

hello

while Lauren brings up good points about other diseases it could be, my frame of reference is a bit difference having experience with a late diagnosis and having met and talked with others in the same boat as your mom. I think it makes sense to get to the bottom of this but with a family history of CF that, to me, is the most logical place to start the elimination process. So, here is my 2 cents.

she needs to have an ambry full panel, insurance cost $3100 but out pocket with payment plan is $1400. The other option since you know what mutation you have is ambry can test for one mutation for like $200 so that would be a good place to start if you are having trouble from the insurance company. If you can get her to a cf clinic or just talk with them they can help you get justification for the test. A normal sweat test does NOT rule out cf, it is merely a good way to prove CF never to rule out these days.

The director of my cf clinic had a son die in the 70's of CF, she always had occasional bouts cough in winter, as she got older 50's she would get occasional pneumonia, twice she did cultures and it showed PA among others so they had a feeling cf was a possibility since it is very rare for non-CF'ers to have chronic PA cultures. But had she not been in that world noone would ever have thought of it, who looks at an overweight 50+ year old woman and goes hmm lets test for CF? Anyway, they ran a gene test a couple times when head CF doc bugged her and it always showed her 508 and nothing else. Well at the ripe old age of 61 she got a bad bit pneumonia, this was about 4 years ago, they sent off a genetic test for 'fun' and bammo up showed her 2nd mutation, yes she has CF. It is not unheard of.

mom2lillian · May 17, 2008

hello

while Lauren brings up good points about other diseases it could be, my frame of reference is a bit difference having experience with a late diagnosis and having met and talked with others in the same boat as your mom. I think it makes sense to get to the bottom of this but with a family history of CF that, to me, is the most logical place to start the elimination process. So, here is my 2 cents.

she needs to have an ambry full panel, insurance cost $3100 but out pocket with payment plan is $1400. The other option since you know what mutation you have is ambry can test for one mutation for like $200 so that would be a good place to start if you are having trouble from the insurance company. If you can get her to a cf clinic or just talk with them they can help you get justification for the test. A normal sweat test does NOT rule out cf, it is merely a good way to prove CF never to rule out these days.

The director of my cf clinic had a son die in the 70's of CF, she always had occasional bouts cough in winter, as she got older 50's she would get occasional pneumonia, twice she did cultures and it showed PA among others so they had a feeling cf was a possibility since it is very rare for non-CF'ers to have chronic PA cultures. But had she not been in that world noone would ever have thought of it, who looks at an overweight 50+ year old woman and goes hmm lets test for CF? Anyway, they ran a gene test a couple times when head CF doc bugged her and it always showed her 508 and nothing else. Well at the ripe old age of 61 she got a bad bit pneumonia, this was about 4 years ago, they sent off a genetic test for 'fun' and bammo up showed her 2nd mutation, yes she has CF. It is not unheard of.

mom2lillian · May 17, 2008

hello
 
 while Lauren brings up good points about other diseases it could be, my frame of reference is a bit difference having experience with a late diagnosis and having met and talked with others in the same boat as your mom. I think it makes sense to get to the bottom of this but with a family history of CF that, to me, is the most logical place to start the elimination process. So, here is my 2 cents.
 
 she needs to have an ambry full panel, insurance cost $3100 but out pocket with payment plan is $1400. The other option since you know what mutation you have is ambry can test for one mutation for like $200 so that would be a good place to start if you are having trouble from the insurance company. If you can get her to a cf clinic or just talk with them they can help you get justification for the test. A normal sweat test does NOT rule out cf, it is merely a good way to prove CF never to rule out these days.
 
 The director of my cf clinic had a son die in the 70's of CF, she always had occasional bouts cough in winter, as she got older 50's she would get occasional pneumonia, twice she did cultures and it showed PA among others so they had a feeling cf was a possibility since it is very rare for non-CF'ers to have chronic PA cultures. But had she not been in that world noone would ever have thought of it, who looks at an overweight 50+ year old woman and goes hmm lets test for CF? Anyway, they ran a gene test a couple times when head CF doc bugged her and it always showed her 508 and nothing else. Well at the ripe old age of 61 she got a bad bit pneumonia, this was about 4 years ago, they sent off a genetic test for 'fun' and bammo up showed her 2nd mutation, yes she has CF. It is not unheard of.

blueschick · May 18, 2008

Hello there

I am a carrier of D508...my daughter has CF. I was diagnoed with asthma at age 16 after collaspsed lung. ON & off asthma meds all life. After severe sinus and ear problems followed by sinus surgery I was diagnosed with allergic aspergillus and bronchiectasis at age 46 after feeling like crap for years and coughing up mobs of little black specks. I did have a CF test at 28 after my child was diagnosed with CF... which was negative. I have psuedemonas auriginosa which was found in my ears during surgery and causes me grief off and on. I do not have CF but I do know of another parent of a young girl with CF and the grandparent of a young girl with CF who both have problems very similar to mine.

I dunno!!!!!

blueschick · May 18, 2008

Hello there

I am a carrier of D508...my daughter has CF. I was diagnoed with asthma at age 16 after collaspsed lung. ON & off asthma meds all life. After severe sinus and ear problems followed by sinus surgery I was diagnosed with allergic aspergillus and bronchiectasis at age 46 after feeling like crap for years and coughing up mobs of little black specks. I did have a CF test at 28 after my child was diagnosed with CF... which was negative. I have psuedemonas auriginosa which was found in my ears during surgery and causes me grief off and on. I do not have CF but I do know of another parent of a young girl with CF and the grandparent of a young girl with CF who both have problems very similar to mine.

I dunno!!!!!

blueschick · May 18, 2008

Hello there

I am a carrier of D508...my daughter has CF. I was diagnoed with asthma at age 16 after collaspsed lung. ON & off asthma meds all life. After severe sinus and ear problems followed by sinus surgery I was diagnosed with allergic aspergillus and bronchiectasis at age 46 after feeling like crap for years and coughing up mobs of little black specks. I did have a CF test at 28 after my child was diagnosed with CF... which was negative. I have psuedemonas auriginosa which was found in my ears during surgery and causes me grief off and on. I do not have CF but I do know of another parent of a young girl with CF and the grandparent of a young girl with CF who both have problems very similar to mine.

I dunno!!!!!

blueschick · May 18, 2008

Hello there

I am a carrier of D508...my daughter has CF. I was diagnoed with asthma at age 16 after collaspsed lung. ON & off asthma meds all life. After severe sinus and ear problems followed by sinus surgery I was diagnosed with allergic aspergillus and bronchiectasis at age 46 after feeling like crap for years and coughing up mobs of little black specks. I did have a CF test at 28 after my child was diagnosed with CF... which was negative. I have psuedemonas auriginosa which was found in my ears during surgery and causes me grief off and on. I do not have CF but I do know of another parent of a young girl with CF and the grandparent of a young girl with CF who both have problems very similar to mine.

I dunno!!!!!

blueschick · May 18, 2008

Hello there
 
 I am a carrier of D508...my daughter has CF. I was diagnoed with asthma at age 16 after collaspsed lung. ON & off asthma meds all life. After severe sinus and ear problems followed by sinus surgery I was diagnosed with allergic aspergillus and bronchiectasis at age 46 after feeling like crap for years and coughing up mobs of little black specks. I did have a CF test at 28 after my child was diagnosed with CF... which was negative. I have psuedemonas auriginosa which was found in my ears during surgery and causes me grief off and on. I do not have CF but I do know of another parent of a young girl with CF and the grandparent of a young girl with CF who both have problems very similar to mine.
 
 I dunno!!!!!

MargaritaChic · May 18, 2008

It is interesting you posted this. My daughter's CF clinic sent us paperwork this week asking my husband and I to participate in a study.

They are going to study whether carriers are symptomatic. I think it is focusing on lung. I do not have the papers right in front of me, but I can tell you what it said later, if you are interested.

MargaritaChic · May 18, 2008

It is interesting you posted this. My daughter's CF clinic sent us paperwork this week asking my husband and I to participate in a study.

They are going to study whether carriers are symptomatic. I think it is focusing on lung. I do not have the papers right in front of me, but I can tell you what it said later, if you are interested.

MargaritaChic · May 18, 2008

It is interesting you posted this. My daughter's CF clinic sent us paperwork this week asking my husband and I to participate in a study.

They are going to study whether carriers are symptomatic. I think it is focusing on lung. I do not have the papers right in front of me, but I can tell you what it said later, if you are interested.

MargaritaChic · May 18, 2008

It is interesting you posted this. My daughter's CF clinic sent us paperwork this week asking my husband and I to participate in a study.

They are going to study whether carriers are symptomatic. I think it is focusing on lung. I do not have the papers right in front of me, but I can tell you what it said later, if you are interested.

MargaritaChic · May 18, 2008

It is interesting you posted this. My daughter's CF clinic sent us paperwork this week asking my husband and I to participate in a study.
 
 They are going to study whether carriers are symptomatic. I think it is focusing on lung. I do not have the papers right in front of me, but I can tell you what it said later, if you are interested.

Diane · May 18, 2008

I find this interesting also, since my mom has some health issues that had her suspecting the possiblilty of her having cf. All her life she was forever coming down with something. If there was a cold out there lurking around she got it. Then as she got older she would get pneumonia at least once a year for years. Then about 5 or 6 years ago she got an annoying cough that she never got rid of. My mother has never smoked a day in her life, nor has anyone in my family.The odd thing is she never has any mucus in her. Its always that annoying dry cough. She had a blood test done that revealed she had a cf gene but she never asked which one. Finally she started going to a pulmonary Dr. and he says she has mild pulmonary fibrosis. After i was diagnosed with cepacia 11+ years ago, i myself would get sick more often, and my mom and i were always close and went everywhere together, but next thing you know when i would catch something and be coughing more, she would get sick from being around me. Thats when i started to suspect , maybe she has cf....
Part of me wants her to get more testing done, but i know she wont do it. She is 70 now and is getting more stubborn as the years go by....lol
I have often heard of the symptomatic carrier, and who knows maybe there is some merit to it.

Diane · May 18, 2008

I find this interesting also, since my mom has some health issues that had her suspecting the possiblilty of her having cf. All her life she was forever coming down with something. If there was a cold out there lurking around she got it. Then as she got older she would get pneumonia at least once a year for years. Then about 5 or 6 years ago she got an annoying cough that she never got rid of. My mother has never smoked a day in her life, nor has anyone in my family.The odd thing is she never has any mucus in her. Its always that annoying dry cough. She had a blood test done that revealed she had a cf gene but she never asked which one. Finally she started going to a pulmonary Dr. and he says she has mild pulmonary fibrosis. After i was diagnosed with cepacia 11+ years ago, i myself would get sick more often, and my mom and i were always close and went everywhere together, but next thing you know when i would catch something and be coughing more, she would get sick from being around me. Thats when i started to suspect , maybe she has cf....
Part of me wants her to get more testing done, but i know she wont do it. She is 70 now and is getting more stubborn as the years go by....lol
I have often heard of the symptomatic carrier, and who knows maybe there is some merit to it.

Diane · May 18, 2008

I find this interesting also, since my mom has some health issues that had her suspecting the possiblilty of her having cf. All her life she was forever coming down with something. If there was a cold out there lurking around she got it. Then as she got older she would get pneumonia at least once a year for years. Then about 5 or 6 years ago she got an annoying cough that she never got rid of. My mother has never smoked a day in her life, nor has anyone in my family.The odd thing is she never has any mucus in her. Its always that annoying dry cough. She had a blood test done that revealed she had a cf gene but she never asked which one. Finally she started going to a pulmonary Dr. and he says she has mild pulmonary fibrosis. After i was diagnosed with cepacia 11+ years ago, i myself would get sick more often, and my mom and i were always close and went everywhere together, but next thing you know when i would catch something and be coughing more, she would get sick from being around me. Thats when i started to suspect , maybe she has cf....
Part of me wants her to get more testing done, but i know she wont do it. She is 70 now and is getting more stubborn as the years go by....lol
I have often heard of the symptomatic carrier, and who knows maybe there is some merit to it.

Diane · May 18, 2008

I find this interesting also, since my mom has some health issues that had her suspecting the possiblilty of her having cf. All her life she was forever coming down with something. If there was a cold out there lurking around she got it. Then as she got older she would get pneumonia at least once a year for years. Then about 5 or 6 years ago she got an annoying cough that she never got rid of. My mother has never smoked a day in her life, nor has anyone in my family.The odd thing is she never has any mucus in her. Its always that annoying dry cough. She had a blood test done that revealed she had a cf gene but she never asked which one. Finally she started going to a pulmonary Dr. and he says she has mild pulmonary fibrosis. After i was diagnosed with cepacia 11+ years ago, i myself would get sick more often, and my mom and i were always close and went everywhere together, but next thing you know when i would catch something and be coughing more, she would get sick from being around me. Thats when i started to suspect , maybe she has cf....
Part of me wants her to get more testing done, but i know she wont do it. She is 70 now and is getting more stubborn as the years go by....lol
I have often heard of the symptomatic carrier, and who knows maybe there is some merit to it.

Diane · May 18, 2008

I find this interesting also, since my mom has some health issues that had her suspecting the possiblilty of her having cf. All her life she was forever coming down with something. If there was a cold out there lurking around she got it. Then as she got older she would get pneumonia at least once a year for years. Then about 5 or 6 years ago she got an annoying cough that she never got rid of. My mother has never smoked a day in her life, nor has anyone in my family.The odd thing is she never has any mucus in her. Its always that annoying dry cough. She had a blood test done that revealed she had a cf gene but she never asked which one. Finally she started going to a pulmonary Dr. and he says she has mild pulmonary fibrosis. After i was diagnosed with cepacia 11+ years ago, i myself would get sick more often, and my mom and i were always close and went everywhere together, but next thing you know when i would catch something and be coughing more, she would get sick from being around me. Thats when i started to suspect , maybe she has cf....
 Part of me wants her to get more testing done, but i know she wont do it. She is 70 now and is getting more stubborn as the years go by....lol
 I have often heard of the symptomatic carrier, and who knows maybe there is some merit to it.

DF508 carriers and bad CF symptoms

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