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I am in so much denial

A

Aka2007

New member
I am so not in the loop with my cystic fibrosis. I don't go to a great big nice CF center and I don't stay in a hospital where I have known the nurses. and they know me. I go to just a (normal clinic) where there are inturnests that treat anything and everyone.

(MY DX).......

My dx was not real clear the only thing that made my doc think it is CF is that I had all the issues a CFer would have. and one F508 gene. My sweat test was (noraml) and I know somethimes they can be noraml even if you do have CF. So anyway I just feel so out of the loop and disconnected from the CF world. I know that I get allot of infections and that food can be hard for me to digest I (NEVER cough up mucus (NEVER) I don't even cough up NORMAL mucus I cough up nothing! And then all the docs say well cough hard after your CPT and clear it out! well I just don't know anymore.. Why would I not be coughing anything up?! I was told CFers cough all the time and cough up cups and cups of mucus.

I cought up nothing all I have it shortness of breath and chest pain. I also never cough up blood.. never! So now I am on a CF treatment plan and I am going down to mayo in Dec.

But I just don't get it. and do CFers sleep all day? becuase I am sleepy all the time. I am so sick of being sick and everything thinks it CF or it is CF and I am in so much denial. I con't take having to take shots 4 times a day to keep my tummy from getting upset.. and I just con't keep up with my treatments! thats all I do all day it sleep, treatments, meds.... I hate it!!! Sorry I have so had it with this.

I have had 3 tune-ups this year and feel like I need more. and then theres the docs who don't think I have CF at all... SO WHAT THE F... do they think it is then???! I con't take it I just somethimes feeling like I am going to pop I am so made at my issues. And why could I have not been dx at BIRTH!!! like everyone eles...

Is there someone out there who can understand how I am feeling? I need help.<img src="i/expressions/face-icon-small-mad.gif" border="0">
 
A

Aka2007

New member
I am so not in the loop with my cystic fibrosis. I don't go to a great big nice CF center and I don't stay in a hospital where I have known the nurses. and they know me. I go to just a (normal clinic) where there are inturnests that treat anything and everyone.

(MY DX).......

My dx was not real clear the only thing that made my doc think it is CF is that I had all the issues a CFer would have. and one F508 gene. My sweat test was (noraml) and I know somethimes they can be noraml even if you do have CF. So anyway I just feel so out of the loop and disconnected from the CF world. I know that I get allot of infections and that food can be hard for me to digest I (NEVER cough up mucus (NEVER) I don't even cough up NORMAL mucus I cough up nothing! And then all the docs say well cough hard after your CPT and clear it out! well I just don't know anymore.. Why would I not be coughing anything up?! I was told CFers cough all the time and cough up cups and cups of mucus.

I cought up nothing all I have it shortness of breath and chest pain. I also never cough up blood.. never! So now I am on a CF treatment plan and I am going down to mayo in Dec.

But I just don't get it. and do CFers sleep all day? becuase I am sleepy all the time. I am so sick of being sick and everything thinks it CF or it is CF and I am in so much denial. I con't take having to take shots 4 times a day to keep my tummy from getting upset.. and I just con't keep up with my treatments! thats all I do all day it sleep, treatments, meds.... I hate it!!! Sorry I have so had it with this.

I have had 3 tune-ups this year and feel like I need more. and then theres the docs who don't think I have CF at all... SO WHAT THE F... do they think it is then???! I con't take it I just somethimes feeling like I am going to pop I am so made at my issues. And why could I have not been dx at BIRTH!!! like everyone eles...

Is there someone out there who can understand how I am feeling? I need help.<img src="i/expressions/face-icon-small-mad.gif" border="0">
 
A

Aka2007

New member
I am so not in the loop with my cystic fibrosis. I don't go to a great big nice CF center and I don't stay in a hospital where I have known the nurses. and they know me. I go to just a (normal clinic) where there are inturnests that treat anything and everyone.

(MY DX).......

My dx was not real clear the only thing that made my doc think it is CF is that I had all the issues a CFer would have. and one F508 gene. My sweat test was (noraml) and I know somethimes they can be noraml even if you do have CF. So anyway I just feel so out of the loop and disconnected from the CF world. I know that I get allot of infections and that food can be hard for me to digest I (NEVER cough up mucus (NEVER) I don't even cough up NORMAL mucus I cough up nothing! And then all the docs say well cough hard after your CPT and clear it out! well I just don't know anymore.. Why would I not be coughing anything up?! I was told CFers cough all the time and cough up cups and cups of mucus.

I cought up nothing all I have it shortness of breath and chest pain. I also never cough up blood.. never! So now I am on a CF treatment plan and I am going down to mayo in Dec.

But I just don't get it. and do CFers sleep all day? becuase I am sleepy all the time. I am so sick of being sick and everything thinks it CF or it is CF and I am in so much denial. I con't take having to take shots 4 times a day to keep my tummy from getting upset.. and I just con't keep up with my treatments! thats all I do all day it sleep, treatments, meds.... I hate it!!! Sorry I have so had it with this.

I have had 3 tune-ups this year and feel like I need more. and then theres the docs who don't think I have CF at all... SO WHAT THE F... do they think it is then???! I con't take it I just somethimes feeling like I am going to pop I am so made at my issues. And why could I have not been dx at BIRTH!!! like everyone eles...

Is there someone out there who can understand how I am feeling? I need help.<img src="i/expressions/face-icon-small-mad.gif" border="0">
 
A

Aka2007

New member
I am so not in the loop with my cystic fibrosis. I don't go to a great big nice CF center and I don't stay in a hospital where I have known the nurses. and they know me. I go to just a (normal clinic) where there are inturnests that treat anything and everyone.

(MY DX).......

My dx was not real clear the only thing that made my doc think it is CF is that I had all the issues a CFer would have. and one F508 gene. My sweat test was (noraml) and I know somethimes they can be noraml even if you do have CF. So anyway I just feel so out of the loop and disconnected from the CF world. I know that I get allot of infections and that food can be hard for me to digest I (NEVER cough up mucus (NEVER) I don't even cough up NORMAL mucus I cough up nothing! And then all the docs say well cough hard after your CPT and clear it out! well I just don't know anymore.. Why would I not be coughing anything up?! I was told CFers cough all the time and cough up cups and cups of mucus.

I cought up nothing all I have it shortness of breath and chest pain. I also never cough up blood.. never! So now I am on a CF treatment plan and I am going down to mayo in Dec.

But I just don't get it. and do CFers sleep all day? becuase I am sleepy all the time. I am so sick of being sick and everything thinks it CF or it is CF and I am in so much denial. I con't take having to take shots 4 times a day to keep my tummy from getting upset.. and I just con't keep up with my treatments! thats all I do all day it sleep, treatments, meds.... I hate it!!! Sorry I have so had it with this.

I have had 3 tune-ups this year and feel like I need more. and then theres the docs who don't think I have CF at all... SO WHAT THE F... do they think it is then???! I con't take it I just somethimes feeling like I am going to pop I am so made at my issues. And why could I have not been dx at BIRTH!!! like everyone eles...

Is there someone out there who can understand how I am feeling? I need help.<img src="i/expressions/face-icon-small-mad.gif" border="0">
 
A

Aka2007

New member
I am so not in the loop with my cystic fibrosis. I don't go to a great big nice CF center and I don't stay in a hospital where I have known the nurses. and they know me. I go to just a (normal clinic) where there are inturnests that treat anything and everyone.

(MY DX).......

My dx was not real clear the only thing that made my doc think it is CF is that I had all the issues a CFer would have. and one F508 gene. My sweat test was (noraml) and I know somethimes they can be noraml even if you do have CF. So anyway I just feel so out of the loop and disconnected from the CF world. I know that I get allot of infections and that food can be hard for me to digest I (NEVER cough up mucus (NEVER) I don't even cough up NORMAL mucus I cough up nothing! And then all the docs say well cough hard after your CPT and clear it out! well I just don't know anymore.. Why would I not be coughing anything up?! I was told CFers cough all the time and cough up cups and cups of mucus.

I cought up nothing all I have it shortness of breath and chest pain. I also never cough up blood.. never! So now I am on a CF treatment plan and I am going down to mayo in Dec.

But I just don't get it. and do CFers sleep all day? becuase I am sleepy all the time. I am so sick of being sick and everything thinks it CF or it is CF and I am in so much denial. I con't take having to take shots 4 times a day to keep my tummy from getting upset.. and I just con't keep up with my treatments! thats all I do all day it sleep, treatments, meds.... I hate it!!! Sorry I have so had it with this.

I have had 3 tune-ups this year and feel like I need more. and then theres the docs who don't think I have CF at all... SO WHAT THE F... do they think it is then???! I con't take it I just somethimes feeling like I am going to pop I am so made at my issues. And why could I have not been dx at BIRTH!!! like everyone eles...

Is there someone out there who can understand how I am feeling? I need help.<img src="i/expressions/face-icon-small-mad.gif" border="0">
 
B

BaylorCrew07

New member
Sorry for your frustration <img src="i/expressions/face-icon-small-sad.gif" border="0"> You're not the only one who never coughs up mucus. I have only coughed up enough for a sputum sample twice, normally I can't get anything up. I've also never coughed up blood (thank goodness)

About the sleeping all day... I hear ya! I've never been so exhausted as I have in the past couple months since I started working. I really wish I could sleep all day, and even then I feel like I'd be tired. I think I'm kinda making myself sick by over doing it though... I work about 57 hours a week, and it's nearly impossible to keep up w/ treatments, etc. Fortunately I'm going to the doc tomorrow, so hopefully I'll be feeling better, and maybe a bit less tired soon.

Just out of curiosity, when were you diagnosed w/ CF? I was diagnosed a couple years ago, and it was really hard for me to accept.
 
B

BaylorCrew07

New member
Sorry for your frustration <img src="i/expressions/face-icon-small-sad.gif" border="0"> You're not the only one who never coughs up mucus. I have only coughed up enough for a sputum sample twice, normally I can't get anything up. I've also never coughed up blood (thank goodness)

About the sleeping all day... I hear ya! I've never been so exhausted as I have in the past couple months since I started working. I really wish I could sleep all day, and even then I feel like I'd be tired. I think I'm kinda making myself sick by over doing it though... I work about 57 hours a week, and it's nearly impossible to keep up w/ treatments, etc. Fortunately I'm going to the doc tomorrow, so hopefully I'll be feeling better, and maybe a bit less tired soon.

Just out of curiosity, when were you diagnosed w/ CF? I was diagnosed a couple years ago, and it was really hard for me to accept.
 
B

BaylorCrew07

New member
Sorry for your frustration <img src="i/expressions/face-icon-small-sad.gif" border="0"> You're not the only one who never coughs up mucus. I have only coughed up enough for a sputum sample twice, normally I can't get anything up. I've also never coughed up blood (thank goodness)

About the sleeping all day... I hear ya! I've never been so exhausted as I have in the past couple months since I started working. I really wish I could sleep all day, and even then I feel like I'd be tired. I think I'm kinda making myself sick by over doing it though... I work about 57 hours a week, and it's nearly impossible to keep up w/ treatments, etc. Fortunately I'm going to the doc tomorrow, so hopefully I'll be feeling better, and maybe a bit less tired soon.

Just out of curiosity, when were you diagnosed w/ CF? I was diagnosed a couple years ago, and it was really hard for me to accept.
 
B

BaylorCrew07

New member
Sorry for your frustration <img src="i/expressions/face-icon-small-sad.gif" border="0"> You're not the only one who never coughs up mucus. I have only coughed up enough for a sputum sample twice, normally I can't get anything up. I've also never coughed up blood (thank goodness)

About the sleeping all day... I hear ya! I've never been so exhausted as I have in the past couple months since I started working. I really wish I could sleep all day, and even then I feel like I'd be tired. I think I'm kinda making myself sick by over doing it though... I work about 57 hours a week, and it's nearly impossible to keep up w/ treatments, etc. Fortunately I'm going to the doc tomorrow, so hopefully I'll be feeling better, and maybe a bit less tired soon.

Just out of curiosity, when were you diagnosed w/ CF? I was diagnosed a couple years ago, and it was really hard for me to accept.
 
B

BaylorCrew07

New member
Sorry for your frustration <img src="i/expressions/face-icon-small-sad.gif" border="0"> You're not the only one who never coughs up mucus. I have only coughed up enough for a sputum sample twice, normally I can't get anything up. I've also never coughed up blood (thank goodness)

About the sleeping all day... I hear ya! I've never been so exhausted as I have in the past couple months since I started working. I really wish I could sleep all day, and even then I feel like I'd be tired. I think I'm kinda making myself sick by over doing it though... I work about 57 hours a week, and it's nearly impossible to keep up w/ treatments, etc. Fortunately I'm going to the doc tomorrow, so hopefully I'll be feeling better, and maybe a bit less tired soon.

Just out of curiosity, when were you diagnosed w/ CF? I was diagnosed a couple years ago, and it was really hard for me to accept.
 
S

sue35

New member
You need to get a genetic panel done. You might not have CF, you won't know until you get it done. Have they only found the one gene? If so, then did you get the full panel done?
 
S

sue35

New member
You need to get a genetic panel done. You might not have CF, you won't know until you get it done. Have they only found the one gene? If so, then did you get the full panel done?
 
S

sue35

New member
You need to get a genetic panel done. You might not have CF, you won't know until you get it done. Have they only found the one gene? If so, then did you get the full panel done?
 
S

sue35

New member
You need to get a genetic panel done. You might not have CF, you won't know until you get it done. Have they only found the one gene? If so, then did you get the full panel done?
 
S

sue35

New member
You need to get a genetic panel done. You might not have CF, you won't know until you get it done. Have they only found the one gene? If so, then did you get the full panel done?
 
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