Mild CF?

[AnnaH]

<div class="FTQUOTE"><begin quote>So I guess the conclusion is she has Cf with no respiratory symptoms yet to be seen. </end quote></div>
Probably. I was one of those kids who probably could have gone without any respiratory meds for a long time.
My issues were largely to do with digestion and weight gain. I can count the number of times I was on antibiotics on one hand.
That said, I'm now 18 and in the moderate range(FEV1 of 45-50%, IV's 3-4 times a year). I was 15 before my FEV1 dipped lower than 85%.
The point of all that was that it *is* possible to just not have many lung issues for a long time. I think for most of us it will eventually catch up with us. It's just for some people it takes longer. Also, I wouldn't say that the meds are doing nothing unless you've gone off them for an extended period of time. They may be the reason she has no symptoms.
I am also DD508, had an MI at birth and my sweat test was through the roof. I have "classic" or "typical" CF.

I agree with the person who said "mild" is a stage(although my clinic uses numbers- 1 being mild, 4 being end stage). All of us start as mild, and we will all progess to severe. It might take a long time, but as it stands that is the progression of this disease.

 

[AnnaH]

<div class="FTQUOTE"><begin quote>So I guess the conclusion is she has Cf with no respiratory symptoms yet to be seen. </end quote></div>
Probably. I was one of those kids who probably could have gone without any respiratory meds for a long time.
My issues were largely to do with digestion and weight gain. I can count the number of times I was on antibiotics on one hand.
That said, I'm now 18 and in the moderate range(FEV1 of 45-50%, IV's 3-4 times a year). I was 15 before my FEV1 dipped lower than 85%.
The point of all that was that it *is* possible to just not have many lung issues for a long time. I think for most of us it will eventually catch up with us. It's just for some people it takes longer. Also, I wouldn't say that the meds are doing nothing unless you've gone off them for an extended period of time. They may be the reason she has no symptoms.
I am also DD508, had an MI at birth and my sweat test was through the roof. I have "classic" or "typical" CF.

I agree with the person who said "mild" is a stage(although my clinic uses numbers- 1 being mild, 4 being end stage). All of us start as mild, and we will all progess to severe. It might take a long time, but as it stands that is the progression of this disease.

 

[AnnaH]

<div class="FTQUOTE"><begin quote>So I guess the conclusion is she has Cf with no respiratory symptoms yet to be seen. </end quote></div>
Probably. I was one of those kids who probably could have gone without any respiratory meds for a long time.
My issues were largely to do with digestion and weight gain. I can count the number of times I was on antibiotics on one hand.
That said, I'm now 18 and in the moderate range(FEV1 of 45-50%, IV's 3-4 times a year). I was 15 before my FEV1 dipped lower than 85%.
The point of all that was that it *is* possible to just not have many lung issues for a long time. I think for most of us it will eventually catch up with us. It's just for some people it takes longer. Also, I wouldn't say that the meds are doing nothing unless you've gone off them for an extended period of time. They may be the reason she has no symptoms.
I am also DD508, had an MI at birth and my sweat test was through the roof. I have "classic" or "typical" CF.

I agree with the person who said "mild" is a stage(although my clinic uses numbers- 1 being mild, 4 being end stage). All of us start as mild, and we will all progess to severe. It might take a long time, but as it stands that is the progression of this disease.

 

[AnnaH]

<div class="FTQUOTE"><begin quote>So I guess the conclusion is she has Cf with no respiratory symptoms yet to be seen. </end quote>
Probably. I was one of those kids who probably could have gone without any respiratory meds for a long time.
My issues were largely to do with digestion and weight gain. I can count the number of times I was on antibiotics on one hand.
That said, I'm now 18 and in the moderate range(FEV1 of 45-50%, IV's 3-4 times a year). I was 15 before my FEV1 dipped lower than 85%.
The point of all that was that it *is* possible to just not have many lung issues for a long time. I think for most of us it will eventually catch up with us. It's just for some people it takes longer. Also, I wouldn't say that the meds are doing nothing unless you've gone off them for an extended period of time. They may be the reason she has no symptoms.
I am also DD508, had an MI at birth and my sweat test was through the roof. I have "classic" or "typical" CF.

I agree with the person who said "mild" is a stage(although my clinic uses numbers- 1 being mild, 4 being end stage). All of us start as mild, and we will all progess to severe. It might take a long time, but as it stands that is the progression of this disease.

 

[AnnaH]

<div class="FTQUOTE"><begin quote>So I guess the conclusion is she has Cf with no respiratory symptoms yet to be seen. </end quote>
<br />Probably. I was one of those kids who probably could have gone without any respiratory meds for a long time.
<br />My issues were largely to do with digestion and weight gain. I can count the number of times I was on antibiotics on one hand.
<br />That said, I'm now 18 and in the moderate range(FEV1 of 45-50%, IV's 3-4 times a year). I was 15 before my FEV1 dipped lower than 85%.
<br />The point of all that was that it *is* possible to just not have many lung issues for a long time. I think for most of us it will eventually catch up with us. It's just for some people it takes longer. Also, I wouldn't say that the meds are doing nothing unless you've gone off them for an extended period of time. They may be the reason she has no symptoms.
<br />I am also DD508, had an MI at birth and my sweat test was through the roof. I have "classic" or "typical" CF.
<br />
<br />I agree with the person who said "mild" is a stage(although my clinic uses numbers- 1 being mild, 4 being end stage). All of us start as mild, and we will all progess to severe. It might take a long time, but as it stands that is the progression of this disease.

 

[flatfordl]

Anna H-
What type of meds and treatments were you on while you showed no respiratory symptoms for 15 years? Did you do the vest? Did you ever wonder why you were doing them if you weren't showing those symptoms?

I worry about Avery as a teenager and how hard it is going to be. She is already super brave/bold and strong willed. They have hold her down or roll her in sheets like a taco to give her a shot or even do a throat culture!!


Take care and it sounds like you are a smart girl who understands a lot about your CF. I hope Avery is an advocate for herself too.

 

[flatfordl]

Anna H-
What type of meds and treatments were you on while you showed no respiratory symptoms for 15 years? Did you do the vest? Did you ever wonder why you were doing them if you weren't showing those symptoms?

I worry about Avery as a teenager and how hard it is going to be. She is already super brave/bold and strong willed. They have hold her down or roll her in sheets like a taco to give her a shot or even do a throat culture!!


Take care and it sounds like you are a smart girl who understands a lot about your CF. I hope Avery is an advocate for herself too.

 

[flatfordl]

Anna H-
What type of meds and treatments were you on while you showed no respiratory symptoms for 15 years? Did you do the vest? Did you ever wonder why you were doing them if you weren't showing those symptoms?

I worry about Avery as a teenager and how hard it is going to be. She is already super brave/bold and strong willed. They have hold her down or roll her in sheets like a taco to give her a shot or even do a throat culture!!


Take care and it sounds like you are a smart girl who understands a lot about your CF. I hope Avery is an advocate for herself too.

 

[flatfordl]

Anna H-
What type of meds and treatments were you on while you showed no respiratory symptoms for 15 years? Did you do the vest? Did you ever wonder why you were doing them if you weren't showing those symptoms?

I worry about Avery as a teenager and how hard it is going to be. She is already super brave/bold and strong willed. They have hold her down or roll her in sheets like a taco to give her a shot or even do a throat culture!!


Take care and it sounds like you are a smart girl who understands a lot about your CF. I hope Avery is an advocate for herself too.

 

[flatfordl]

Anna H-
<br />What type of meds and treatments were you on while you showed no respiratory symptoms for 15 years? Did you do the vest? Did you ever wonder why you were doing them if you weren't showing those symptoms?
<br />
<br />I worry about Avery as a teenager and how hard it is going to be. She is already super brave/bold and strong willed. They have hold her down or roll her in sheets like a taco to give her a shot or even do a throat culture!!
<br />
<br />
<br />Take care and it sounds like you are a smart girl who understands a lot about your CF. I hope Avery is an advocate for herself too.
<br />
<br />

 

[chrissyd]

From what I was told by my Dr; there is no "mild" only mild symptoms. My genetics Dr's also told me that the medical community is just started to look at and try to figure out modifier genes. (which is why some people have those mild symptoms longer than others) My CF and genetics Dr's both work at the NIH (national institutes of health) so I tend to believe it when they tell me stuff...


Now for the answer you asked about (LOL):
I am 31 with CF and up until recently had "mild" symptoms. Lung health for me is good right now (81% at last PFT), but digestive issues as well as other health problems have contributed to my recent application for disability.


<img src="i/expressions/rose.gif" border="0">

 

[chrissyd]

From what I was told by my Dr; there is no "mild" only mild symptoms. My genetics Dr's also told me that the medical community is just started to look at and try to figure out modifier genes. (which is why some people have those mild symptoms longer than others) My CF and genetics Dr's both work at the NIH (national institutes of health) so I tend to believe it when they tell me stuff...


Now for the answer you asked about (LOL):
I am 31 with CF and up until recently had "mild" symptoms. Lung health for me is good right now (81% at last PFT), but digestive issues as well as other health problems have contributed to my recent application for disability.


<img src="i/expressions/rose.gif" border="0">

 

[chrissyd]

From what I was told by my Dr; there is no "mild" only mild symptoms. My genetics Dr's also told me that the medical community is just started to look at and try to figure out modifier genes. (which is why some people have those mild symptoms longer than others) My CF and genetics Dr's both work at the NIH (national institutes of health) so I tend to believe it when they tell me stuff...


Now for the answer you asked about (LOL):
I am 31 with CF and up until recently had "mild" symptoms. Lung health for me is good right now (81% at last PFT), but digestive issues as well as other health problems have contributed to my recent application for disability.


<img src="i/expressions/rose.gif" border="0">

 

[chrissyd]

From what I was told by my Dr; there is no "mild" only mild symptoms. My genetics Dr's also told me that the medical community is just started to look at and try to figure out modifier genes. (which is why some people have those mild symptoms longer than others) My CF and genetics Dr's both work at the NIH (national institutes of health) so I tend to believe it when they tell me stuff...


Now for the answer you asked about (LOL):
I am 31 with CF and up until recently had "mild" symptoms. Lung health for me is good right now (81% at last PFT), but digestive issues as well as other health problems have contributed to my recent application for disability.


<img src="i/expressions/rose.gif" border="0">

 

[chrissyd]

From what I was told by my Dr; there is no "mild" only mild symptoms. My genetics Dr's also told me that the medical community is just started to look at and try to figure out modifier genes. (which is why some people have those mild symptoms longer than others) My CF and genetics Dr's both work at the NIH (national institutes of health) so I tend to believe it when they tell me stuff...
<br />
<br />
<br />Now for the answer you asked about (LOL):
<br />I am 31 with CF and up until recently had "mild" symptoms. Lung health for me is good right now (81% at last PFT), but digestive issues as well as other health problems have contributed to my recent application for disability.
<br />
<br />
<br /><img src="i/expressions/rose.gif" border="0">
<br />

 

[AnnaH]

<div class="FTQUOTE"><begin quote>What type of meds and treatments were you on while you showed no respiratory symptoms for 15 years? Did you do the vest? Did you ever wonder why you were doing them if you weren't showing those symptoms?</end quote></div>
I did ventolin(Albutrol in the states) CPT/the vest combined with the pep mask, and Mucomyst after I couldn't tolerate Pulmozone. I've done ventolin/cpt since birth, and I think was about tenish when I started mucolytics.
I did two rounds of tobi/cipro for PA when I was 3 and 7, and cleared it succesfully both times. I now chronically culture it.

The other stuff just comes with time. My parents just let me work it out by myself- educated me, but made me responsible for my treatment as early as possible. It's worked out pretty well, even when I moved to another country at 16.

 

[AnnaH]

<div class="FTQUOTE"><begin quote>What type of meds and treatments were you on while you showed no respiratory symptoms for 15 years? Did you do the vest? Did you ever wonder why you were doing them if you weren't showing those symptoms?</end quote></div>
I did ventolin(Albutrol in the states) CPT/the vest combined with the pep mask, and Mucomyst after I couldn't tolerate Pulmozone. I've done ventolin/cpt since birth, and I think was about tenish when I started mucolytics.
I did two rounds of tobi/cipro for PA when I was 3 and 7, and cleared it succesfully both times. I now chronically culture it.

The other stuff just comes with time. My parents just let me work it out by myself- educated me, but made me responsible for my treatment as early as possible. It's worked out pretty well, even when I moved to another country at 16.

 

[AnnaH]

<div class="FTQUOTE"><begin quote>What type of meds and treatments were you on while you showed no respiratory symptoms for 15 years? Did you do the vest? Did you ever wonder why you were doing them if you weren't showing those symptoms?</end quote></div>
I did ventolin(Albutrol in the states) CPT/the vest combined with the pep mask, and Mucomyst after I couldn't tolerate Pulmozone. I've done ventolin/cpt since birth, and I think was about tenish when I started mucolytics.
I did two rounds of tobi/cipro for PA when I was 3 and 7, and cleared it succesfully both times. I now chronically culture it.

The other stuff just comes with time. My parents just let me work it out by myself- educated me, but made me responsible for my treatment as early as possible. It's worked out pretty well, even when I moved to another country at 16.

 

[AnnaH]

<div class="FTQUOTE"><begin quote>What type of meds and treatments were you on while you showed no respiratory symptoms for 15 years? Did you do the vest? Did you ever wonder why you were doing them if you weren't showing those symptoms?</end quote>
I did ventolin(Albutrol in the states) CPT/the vest combined with the pep mask, and Mucomyst after I couldn't tolerate Pulmozone. I've done ventolin/cpt since birth, and I think was about tenish when I started mucolytics.
I did two rounds of tobi/cipro for PA when I was 3 and 7, and cleared it succesfully both times. I now chronically culture it.

The other stuff just comes with time. My parents just let me work it out by myself- educated me, but made me responsible for my treatment as early as possible. It's worked out pretty well, even when I moved to another country at 16.

 

[AnnaH]

<div class="FTQUOTE"><begin quote>What type of meds and treatments were you on while you showed no respiratory symptoms for 15 years? Did you do the vest? Did you ever wonder why you were doing them if you weren't showing those symptoms?</end quote>
<br />I did ventolin(Albutrol in the states) CPT/the vest combined with the pep mask, and Mucomyst after I couldn't tolerate Pulmozone. I've done ventolin/cpt since birth, and I think was about tenish when I started mucolytics.
<br />I did two rounds of tobi/cipro for PA when I was 3 and 7, and cleared it succesfully both times. I now chronically culture it.
<br />
<br />The other stuff just comes with time. My parents just let me work it out by myself- educated me, but made me responsible for my treatment as early as possible. It's worked out pretty well, even when I moved to another country at 16.
<br />
<br />