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As a CF carrier, do you suffer any of the CF symptoms?
- Thread starter stringbean
- Start date
You said "not clear" was "all the pulonologist disclosed" - I'd be pushing for a more detailed explanation than that; like how much "not clear" and at what point does the not clear start seeming like a problem that needs to be dealt with? My son's pulmonologist always tells us specifically which section of lung she hears stuff in and a sliding scale of how bad it sounds.
As for the whole cf carrier with symptoms, you can put me down as a "yes"; I've got a known rare one that was found when my son got a full panel test but have not bothered to get myself tested - but I get milder versions of the whole range of cf symptoms so the Dr. refers to me as an undiagnosed CFer sometimes.
As for the whole cf carrier with symptoms, you can put me down as a "yes"; I've got a known rare one that was found when my son got a full panel test but have not bothered to get myself tested - but I get milder versions of the whole range of cf symptoms so the Dr. refers to me as an undiagnosed CFer sometimes.
You said "not clear" was "all the pulonologist disclosed" - I'd be pushing for a more detailed explanation than that; like how much "not clear" and at what point does the not clear start seeming like a problem that needs to be dealt with? My son's pulmonologist always tells us specifically which section of lung she hears stuff in and a sliding scale of how bad it sounds.
As for the whole cf carrier with symptoms, you can put me down as a "yes"; I've got a known rare one that was found when my son got a full panel test but have not bothered to get myself tested - but I get milder versions of the whole range of cf symptoms so the Dr. refers to me as an undiagnosed CFer sometimes.
As for the whole cf carrier with symptoms, you can put me down as a "yes"; I've got a known rare one that was found when my son got a full panel test but have not bothered to get myself tested - but I get milder versions of the whole range of cf symptoms so the Dr. refers to me as an undiagnosed CFer sometimes.
You said "not clear" was "all the pulonologist disclosed" - I'd be pushing for a more detailed explanation than that; like how much "not clear" and at what point does the not clear start seeming like a problem that needs to be dealt with? My son's pulmonologist always tells us specifically which section of lung she hears stuff in and a sliding scale of how bad it sounds.
As for the whole cf carrier with symptoms, you can put me down as a "yes"; I've got a known rare one that was found when my son got a full panel test but have not bothered to get myself tested - but I get milder versions of the whole range of cf symptoms so the Dr. refers to me as an undiagnosed CFer sometimes.
As for the whole cf carrier with symptoms, you can put me down as a "yes"; I've got a known rare one that was found when my son got a full panel test but have not bothered to get myself tested - but I get milder versions of the whole range of cf symptoms so the Dr. refers to me as an undiagnosed CFer sometimes.
You said "not clear" was "all the pulonologist disclosed" - I'd be pushing for a more detailed explanation than that; like how much "not clear" and at what point does the not clear start seeming like a problem that needs to be dealt with? My son's pulmonologist always tells us specifically which section of lung she hears stuff in and a sliding scale of how bad it sounds.
As for the whole cf carrier with symptoms, you can put me down as a "yes"; I've got a known rare one that was found when my son got a full panel test but have not bothered to get myself tested - but I get milder versions of the whole range of cf symptoms so the Dr. refers to me as an undiagnosed CFer sometimes.
As for the whole cf carrier with symptoms, you can put me down as a "yes"; I've got a known rare one that was found when my son got a full panel test but have not bothered to get myself tested - but I get milder versions of the whole range of cf symptoms so the Dr. refers to me as an undiagnosed CFer sometimes.
You said "not clear" was "all the pulonologist disclosed" - I'd be pushing for a more detailed explanation than that; like how much "not clear" and at what point does the not clear start seeming like a problem that needs to be dealt with? My son's pulmonologist always tells us specifically which section of lung she hears stuff in and a sliding scale of how bad it sounds.
<br />
<br />As for the whole cf carrier with symptoms, you can put me down as a "yes"; I've got a known rare one that was found when my son got a full panel test but have not bothered to get myself tested - but I get milder versions of the whole range of cf symptoms so the Dr. refers to me as an undiagnosed CFer sometimes.
<br />
<br />As for the whole cf carrier with symptoms, you can put me down as a "yes"; I've got a known rare one that was found when my son got a full panel test but have not bothered to get myself tested - but I get milder versions of the whole range of cf symptoms so the Dr. refers to me as an undiagnosed CFer sometimes.
W
welshwitch
Guest
I say Yes on carriers having symptoms. Both my parents and brother totally have CF symptoms. They are definitely coughers and are coughing stuff up too lol. They also have horrible allergies. I'd be curious to see what their FEV is!
W
welshwitch
Guest
I say Yes on carriers having symptoms. Both my parents and brother totally have CF symptoms. They are definitely coughers and are coughing stuff up too lol. They also have horrible allergies. I'd be curious to see what their FEV is!
W
welshwitch
Guest
I say Yes on carriers having symptoms. Both my parents and brother totally have CF symptoms. They are definitely coughers and are coughing stuff up too lol. They also have horrible allergies. I'd be curious to see what their FEV is!
W
welshwitch
Guest
I say Yes on carriers having symptoms. Both my parents and brother totally have CF symptoms. They are definitely coughers and are coughing stuff up too lol. They also have horrible allergies. I'd be curious to see what their FEV is!
W
welshwitch
Guest
I say Yes on carriers having symptoms. Both my parents and brother totally have CF symptoms. They are definitely coughers and are coughing stuff up too lol. They also have horrible allergies. I'd be curious to see what their FEV is!
Emily's drs do believe in the possibility of some carriers being symptomatic. This is in debate for Shawn, actually, with his dx being up in the air as it is (sweat test results of 48 and 54, chronic sinus issues, one known mutation. We only know one of Emily's mutations but her symptoms are so much more pronounced, and she had a much higher sweat test result.) We don't know if he has Emily's mystery, 2nd, mutation or if he's just a carrier.
I agree with the others though, in that it seems that this is much less likely for your daughter. I agree with getting a copy of the xray report (and any other testing she's gotten, actually) and getting a 2nd opinion for your daughter with a pulmonary dr. that is well-versed in CF. Even if this one works all day with CF patients, for whatever reason she doesn't appear to be very open-minded- or at the least, she is not communicating very well with you. She won't even tell you what she DOES think is wrong if it's not CF, and that is a red flag to me.
It's SO frustrating having to go through so much in getting appropriate care and treatment for your child...
I agree with the others though, in that it seems that this is much less likely for your daughter. I agree with getting a copy of the xray report (and any other testing she's gotten, actually) and getting a 2nd opinion for your daughter with a pulmonary dr. that is well-versed in CF. Even if this one works all day with CF patients, for whatever reason she doesn't appear to be very open-minded- or at the least, she is not communicating very well with you. She won't even tell you what she DOES think is wrong if it's not CF, and that is a red flag to me.
It's SO frustrating having to go through so much in getting appropriate care and treatment for your child...
Emily's drs do believe in the possibility of some carriers being symptomatic. This is in debate for Shawn, actually, with his dx being up in the air as it is (sweat test results of 48 and 54, chronic sinus issues, one known mutation. We only know one of Emily's mutations but her symptoms are so much more pronounced, and she had a much higher sweat test result.) We don't know if he has Emily's mystery, 2nd, mutation or if he's just a carrier.
I agree with the others though, in that it seems that this is much less likely for your daughter. I agree with getting a copy of the xray report (and any other testing she's gotten, actually) and getting a 2nd opinion for your daughter with a pulmonary dr. that is well-versed in CF. Even if this one works all day with CF patients, for whatever reason she doesn't appear to be very open-minded- or at the least, she is not communicating very well with you. She won't even tell you what she DOES think is wrong if it's not CF, and that is a red flag to me.
It's SO frustrating having to go through so much in getting appropriate care and treatment for your child...
I agree with the others though, in that it seems that this is much less likely for your daughter. I agree with getting a copy of the xray report (and any other testing she's gotten, actually) and getting a 2nd opinion for your daughter with a pulmonary dr. that is well-versed in CF. Even if this one works all day with CF patients, for whatever reason she doesn't appear to be very open-minded- or at the least, she is not communicating very well with you. She won't even tell you what she DOES think is wrong if it's not CF, and that is a red flag to me.
It's SO frustrating having to go through so much in getting appropriate care and treatment for your child...
Emily's drs do believe in the possibility of some carriers being symptomatic. This is in debate for Shawn, actually, with his dx being up in the air as it is (sweat test results of 48 and 54, chronic sinus issues, one known mutation. We only know one of Emily's mutations but her symptoms are so much more pronounced, and she had a much higher sweat test result.) We don't know if he has Emily's mystery, 2nd, mutation or if he's just a carrier.
I agree with the others though, in that it seems that this is much less likely for your daughter. I agree with getting a copy of the xray report (and any other testing she's gotten, actually) and getting a 2nd opinion for your daughter with a pulmonary dr. that is well-versed in CF. Even if this one works all day with CF patients, for whatever reason she doesn't appear to be very open-minded- or at the least, she is not communicating very well with you. She won't even tell you what she DOES think is wrong if it's not CF, and that is a red flag to me.
It's SO frustrating having to go through so much in getting appropriate care and treatment for your child...
I agree with the others though, in that it seems that this is much less likely for your daughter. I agree with getting a copy of the xray report (and any other testing she's gotten, actually) and getting a 2nd opinion for your daughter with a pulmonary dr. that is well-versed in CF. Even if this one works all day with CF patients, for whatever reason she doesn't appear to be very open-minded- or at the least, she is not communicating very well with you. She won't even tell you what she DOES think is wrong if it's not CF, and that is a red flag to me.
It's SO frustrating having to go through so much in getting appropriate care and treatment for your child...
Emily's drs do believe in the possibility of some carriers being symptomatic. This is in debate for Shawn, actually, with his dx being up in the air as it is (sweat test results of 48 and 54, chronic sinus issues, one known mutation. We only know one of Emily's mutations but her symptoms are so much more pronounced, and she had a much higher sweat test result.) We don't know if he has Emily's mystery, 2nd, mutation or if he's just a carrier.
I agree with the others though, in that it seems that this is much less likely for your daughter. I agree with getting a copy of the xray report (and any other testing she's gotten, actually) and getting a 2nd opinion for your daughter with a pulmonary dr. that is well-versed in CF. Even if this one works all day with CF patients, for whatever reason she doesn't appear to be very open-minded- or at the least, she is not communicating very well with you. She won't even tell you what she DOES think is wrong if it's not CF, and that is a red flag to me.
It's SO frustrating having to go through so much in getting appropriate care and treatment for your child...
I agree with the others though, in that it seems that this is much less likely for your daughter. I agree with getting a copy of the xray report (and any other testing she's gotten, actually) and getting a 2nd opinion for your daughter with a pulmonary dr. that is well-versed in CF. Even if this one works all day with CF patients, for whatever reason she doesn't appear to be very open-minded- or at the least, she is not communicating very well with you. She won't even tell you what she DOES think is wrong if it's not CF, and that is a red flag to me.
It's SO frustrating having to go through so much in getting appropriate care and treatment for your child...
Emily's drs do believe in the possibility of some carriers being symptomatic. This is in debate for Shawn, actually, with his dx being up in the air as it is (sweat test results of 48 and 54, chronic sinus issues, one known mutation. We only know one of Emily's mutations but her symptoms are so much more pronounced, and she had a much higher sweat test result.) We don't know if he has Emily's mystery, 2nd, mutation or if he's just a carrier.
<br />
<br />I agree with the others though, in that it seems that this is much less likely for your daughter. I agree with getting a copy of the xray report (and any other testing she's gotten, actually) and getting a 2nd opinion for your daughter with a pulmonary dr. that is well-versed in CF. Even if this one works all day with CF patients, for whatever reason she doesn't appear to be very open-minded- or at the least, she is not communicating very well with you. She won't even tell you what she DOES think is wrong if it's not CF, and that is a red flag to me.
<br />
<br />It's SO frustrating having to go through so much in getting appropriate care and treatment for your child...
<br />
<br />I agree with the others though, in that it seems that this is much less likely for your daughter. I agree with getting a copy of the xray report (and any other testing she's gotten, actually) and getting a 2nd opinion for your daughter with a pulmonary dr. that is well-versed in CF. Even if this one works all day with CF patients, for whatever reason she doesn't appear to be very open-minded- or at the least, she is not communicating very well with you. She won't even tell you what she DOES think is wrong if it's not CF, and that is a red flag to me.
<br />
<br />It's SO frustrating having to go through so much in getting appropriate care and treatment for your child...