DF508 carriers and bad CF symptoms

SaltyAndSweet

New member
Thanks everyone!
Diane, your mom sounds <i>just</i> like mine, almost word for word! Although my mom is only 61, but acts like she is 90 (very inactive, and stubborn! but so am I, LOL).

Mom is now resting at home after her one day hospital stay turned into a six day stay. What was happening was her temp would go up, down then back up... not to big of a deal, but the same was happening to her o2 levels. Her room-air oxygen level would drop to 85% then pop back up to 95% and back down... for no apparent reason. She stabilized over the weekend after the antibiotics kicked in for her pneumonia.

Respiratory tried with all their might to get a sputum sample, the Vest (a whole 1 minute before it became too uncomfortable, I find that cute for some reason), the acapella, the flutter, HTS (with out a single cough)... just a teeny tiny speck that probably isn't enough to culture.

My mom has been sick all of her life, LOTSs of respiratory issues. Many sinus surgeries. She has been on inhalers, now on almost as many and the same kind as me (minus the neb'ed meds). I would sure love to take a look at her x-ray! My CF docs used to say carriers do not show symptoms, but over the past 2-3 years they are admitting there ARE symptomatic carriers. But who treats them? Obviously her current regimen is not working for her and I really want her to get some better help. Convincing her of that is going to be a real challenge. Anyone have advice on how to deal with a stubborn parent?
 

SaltyAndSweet

New member
Thanks everyone!
Diane, your mom sounds <i>just</i> like mine, almost word for word! Although my mom is only 61, but acts like she is 90 (very inactive, and stubborn! but so am I, LOL).

Mom is now resting at home after her one day hospital stay turned into a six day stay. What was happening was her temp would go up, down then back up... not to big of a deal, but the same was happening to her o2 levels. Her room-air oxygen level would drop to 85% then pop back up to 95% and back down... for no apparent reason. She stabilized over the weekend after the antibiotics kicked in for her pneumonia.

Respiratory tried with all their might to get a sputum sample, the Vest (a whole 1 minute before it became too uncomfortable, I find that cute for some reason), the acapella, the flutter, HTS (with out a single cough)... just a teeny tiny speck that probably isn't enough to culture.

My mom has been sick all of her life, LOTSs of respiratory issues. Many sinus surgeries. She has been on inhalers, now on almost as many and the same kind as me (minus the neb'ed meds). I would sure love to take a look at her x-ray! My CF docs used to say carriers do not show symptoms, but over the past 2-3 years they are admitting there ARE symptomatic carriers. But who treats them? Obviously her current regimen is not working for her and I really want her to get some better help. Convincing her of that is going to be a real challenge. Anyone have advice on how to deal with a stubborn parent?
 

SaltyAndSweet

New member
Thanks everyone!
Diane, your mom sounds <i>just</i> like mine, almost word for word! Although my mom is only 61, but acts like she is 90 (very inactive, and stubborn! but so am I, LOL).

Mom is now resting at home after her one day hospital stay turned into a six day stay. What was happening was her temp would go up, down then back up... not to big of a deal, but the same was happening to her o2 levels. Her room-air oxygen level would drop to 85% then pop back up to 95% and back down... for no apparent reason. She stabilized over the weekend after the antibiotics kicked in for her pneumonia.

Respiratory tried with all their might to get a sputum sample, the Vest (a whole 1 minute before it became too uncomfortable, I find that cute for some reason), the acapella, the flutter, HTS (with out a single cough)... just a teeny tiny speck that probably isn't enough to culture.

My mom has been sick all of her life, LOTSs of respiratory issues. Many sinus surgeries. She has been on inhalers, now on almost as many and the same kind as me (minus the neb'ed meds). I would sure love to take a look at her x-ray! My CF docs used to say carriers do not show symptoms, but over the past 2-3 years they are admitting there ARE symptomatic carriers. But who treats them? Obviously her current regimen is not working for her and I really want her to get some better help. Convincing her of that is going to be a real challenge. Anyone have advice on how to deal with a stubborn parent?
 

SaltyAndSweet

New member
Thanks everyone!
Diane, your mom sounds <i>just</i> like mine, almost word for word! Although my mom is only 61, but acts like she is 90 (very inactive, and stubborn! but so am I, LOL).

Mom is now resting at home after her one day hospital stay turned into a six day stay. What was happening was her temp would go up, down then back up... not to big of a deal, but the same was happening to her o2 levels. Her room-air oxygen level would drop to 85% then pop back up to 95% and back down... for no apparent reason. She stabilized over the weekend after the antibiotics kicked in for her pneumonia.

Respiratory tried with all their might to get a sputum sample, the Vest (a whole 1 minute before it became too uncomfortable, I find that cute for some reason), the acapella, the flutter, HTS (with out a single cough)... just a teeny tiny speck that probably isn't enough to culture.

My mom has been sick all of her life, LOTSs of respiratory issues. Many sinus surgeries. She has been on inhalers, now on almost as many and the same kind as me (minus the neb'ed meds). I would sure love to take a look at her x-ray! My CF docs used to say carriers do not show symptoms, but over the past 2-3 years they are admitting there ARE symptomatic carriers. But who treats them? Obviously her current regimen is not working for her and I really want her to get some better help. Convincing her of that is going to be a real challenge. Anyone have advice on how to deal with a stubborn parent?
 

SaltyAndSweet

New member
Thanks everyone!
<br />Diane, your mom sounds <i>just</i> like mine, almost word for word! Although my mom is only 61, but acts like she is 90 (very inactive, and stubborn! but so am I, LOL).
<br />
<br />Mom is now resting at home after her one day hospital stay turned into a six day stay. What was happening was her temp would go up, down then back up... not to big of a deal, but the same was happening to her o2 levels. Her room-air oxygen level would drop to 85% then pop back up to 95% and back down... for no apparent reason. She stabilized over the weekend after the antibiotics kicked in for her pneumonia.
<br />
<br />Respiratory tried with all their might to get a sputum sample, the Vest (a whole 1 minute before it became too uncomfortable, I find that cute for some reason), the acapella, the flutter, HTS (with out a single cough)... just a teeny tiny speck that probably isn't enough to culture.
<br />
<br />My mom has been sick all of her life, LOTSs of respiratory issues. Many sinus surgeries. She has been on inhalers, now on almost as many and the same kind as me (minus the neb'ed meds). I would sure love to take a look at her x-ray! My CF docs used to say carriers do not show symptoms, but over the past 2-3 years they are admitting there ARE symptomatic carriers. But who treats them? Obviously her current regimen is not working for her and I really want her to get some better help. Convincing her of that is going to be a real challenge. Anyone have advice on how to deal with a stubborn parent?
<br />
<br />
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SaltyAndSweet</b></i>My CF docs used to say carriers do not show symptoms, but over the past 2-3 years they are admitting there ARE symptomatic carriers. But who treats them? Obviously her current regimen is not working for her and I really want her to get some better help. Convincing her of that is going to be a real challenge. Anyone have advice on how to deal with a stubborn parent?</end quote></div>

Hopefully the fact that our CF Clinic is starting a study on symptomatic carriers means there is a possibility they could get better treatment in the future.
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SaltyAndSweet</b></i>My CF docs used to say carriers do not show symptoms, but over the past 2-3 years they are admitting there ARE symptomatic carriers. But who treats them? Obviously her current regimen is not working for her and I really want her to get some better help. Convincing her of that is going to be a real challenge. Anyone have advice on how to deal with a stubborn parent?</end quote></div>

Hopefully the fact that our CF Clinic is starting a study on symptomatic carriers means there is a possibility they could get better treatment in the future.
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SaltyAndSweet</b></i>My CF docs used to say carriers do not show symptoms, but over the past 2-3 years they are admitting there ARE symptomatic carriers. But who treats them? Obviously her current regimen is not working for her and I really want her to get some better help. Convincing her of that is going to be a real challenge. Anyone have advice on how to deal with a stubborn parent?</end quote></div>

Hopefully the fact that our CF Clinic is starting a study on symptomatic carriers means there is a possibility they could get better treatment in the future.
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SaltyAndSweet</b></i>My CF docs used to say carriers do not show symptoms, but over the past 2-3 years they are admitting there ARE symptomatic carriers. But who treats them? Obviously her current regimen is not working for her and I really want her to get some better help. Convincing her of that is going to be a real challenge. Anyone have advice on how to deal with a stubborn parent?</end quote>

Hopefully the fact that our CF Clinic is starting a study on symptomatic carriers means there is a possibility they could get better treatment in the future.
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SaltyAndSweet</b></i>My CF docs used to say carriers do not show symptoms, but over the past 2-3 years they are admitting there ARE symptomatic carriers. But who treats them? Obviously her current regimen is not working for her and I really want her to get some better help. Convincing her of that is going to be a real challenge. Anyone have advice on how to deal with a stubborn parent?</end quote>
<br />
<br />Hopefully the fact that our CF Clinic is starting a study on symptomatic carriers means there is a possibility they could get better treatment in the future.
<br />
<br />
 

sheanna

New member
Oh yes.

My mom has horrible CF symptoms- malabsorption, GI issues, bone stuff. Same with my grandmother.

My dad on the other hand has Type II diabetes, and he really isn't that overweight. He's also had several kidney stones (which I inherited) and bone issues.
 

sheanna

New member
Oh yes.

My mom has horrible CF symptoms- malabsorption, GI issues, bone stuff. Same with my grandmother.

My dad on the other hand has Type II diabetes, and he really isn't that overweight. He's also had several kidney stones (which I inherited) and bone issues.
 

sheanna

New member
Oh yes.

My mom has horrible CF symptoms- malabsorption, GI issues, bone stuff. Same with my grandmother.

My dad on the other hand has Type II diabetes, and he really isn't that overweight. He's also had several kidney stones (which I inherited) and bone issues.
 

sheanna

New member
Oh yes.

My mom has horrible CF symptoms- malabsorption, GI issues, bone stuff. Same with my grandmother.

My dad on the other hand has Type II diabetes, and he really isn't that overweight. He's also had several kidney stones (which I inherited) and bone issues.
 

sheanna

New member
Oh yes.
<br />
<br />My mom has horrible CF symptoms- malabsorption, GI issues, bone stuff. Same with my grandmother.
<br />
<br />My dad on the other hand has Type II diabetes, and he really isn't that overweight. He's also had several kidney stones (which I inherited) and bone issues.
 

grsswspr

New member
Wow, this is a popular thread. My wife is a Df508 carrier with symptoms of cf. She has had an amplified Ambry and a negative sweat test. She cultured MAC about 2 years ago and has had sinus problems ever since I've known her. She is treated by a pulmonologist and they can't figure out why she has all of this but no cf. She is very thin and seems as though she has malabsorbsion issues. She coughs and spits alot. I'm pretty sure that she has been tested for all the other diseases mentioned above.
 

grsswspr

New member
Wow, this is a popular thread. My wife is a Df508 carrier with symptoms of cf. She has had an amplified Ambry and a negative sweat test. She cultured MAC about 2 years ago and has had sinus problems ever since I've known her. She is treated by a pulmonologist and they can't figure out why she has all of this but no cf. She is very thin and seems as though she has malabsorbsion issues. She coughs and spits alot. I'm pretty sure that she has been tested for all the other diseases mentioned above.
 

grsswspr

New member
Wow, this is a popular thread. My wife is a Df508 carrier with symptoms of cf. She has had an amplified Ambry and a negative sweat test. She cultured MAC about 2 years ago and has had sinus problems ever since I've known her. She is treated by a pulmonologist and they can't figure out why she has all of this but no cf. She is very thin and seems as though she has malabsorbsion issues. She coughs and spits alot. I'm pretty sure that she has been tested for all the other diseases mentioned above.
 

grsswspr

New member
Wow, this is a popular thread. My wife is a Df508 carrier with symptoms of cf. She has had an amplified Ambry and a negative sweat test. She cultured MAC about 2 years ago and has had sinus problems ever since I've known her. She is treated by a pulmonologist and they can't figure out why she has all of this but no cf. She is very thin and seems as though she has malabsorbsion issues. She coughs and spits alot. I'm pretty sure that she has been tested for all the other diseases mentioned above.
 

grsswspr

New member
Wow, this is a popular thread. My wife is a Df508 carrier with symptoms of cf. She has had an amplified Ambry and a negative sweat test. She cultured MAC about 2 years ago and has had sinus problems ever since I've known her. She is treated by a pulmonologist and they can't figure out why she has all of this but no cf. She is very thin and seems as though she has malabsorbsion issues. She coughs and spits alot. I'm pretty sure that she has been tested for all the other diseases mentioned above.
 
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