Awaiting Tests

[SandyCheeks]

Thanks for all of your encouragement! This site and all of you are such an incredible blessing.

I have read your blogs prior to posting. I allow other to influence my thinking way to often. I have thought since my dd was young that there was something that was not right about her frequent infections but since none of the docs said anything I thought it was normal.

I would love to be wrong about this, but I also am prepared to be right. Lung function is way too important to be screwing around with.

Regardless of what we find, I am committed to educating others about the variety of symptoms that CF can take on. I know that until recently I have been fairly ignorant of this.

Thanks again for all of the input,
Sandy

 

[SandyCheeks]

Thanks for all of your encouragement! This site and all of you are such an incredible blessing.

I have read your blogs prior to posting. I allow other to influence my thinking way to often. I have thought since my dd was young that there was something that was not right about her frequent infections but since none of the docs said anything I thought it was normal.

I would love to be wrong about this, but I also am prepared to be right. Lung function is way too important to be screwing around with.

Regardless of what we find, I am committed to educating others about the variety of symptoms that CF can take on. I know that until recently I have been fairly ignorant of this.

Thanks again for all of the input,
Sandy

 

[SandyCheeks]

Thanks for all of your encouragement! This site and all of you are such an incredible blessing.

I have read your blogs prior to posting. I allow other to influence my thinking way to often. I have thought since my dd was young that there was something that was not right about her frequent infections but since none of the docs said anything I thought it was normal.

I would love to be wrong about this, but I also am prepared to be right. Lung function is way too important to be screwing around with.

Regardless of what we find, I am committed to educating others about the variety of symptoms that CF can take on. I know that until recently I have been fairly ignorant of this.

Thanks again for all of the input,
Sandy

 

[SandyCheeks]

Thanks for all of your encouragement! This site and all of you are such an incredible blessing.

I have read your blogs prior to posting. I allow other to influence my thinking way to often. I have thought since my dd was young that there was something that was not right about her frequent infections but since none of the docs said anything I thought it was normal.

I would love to be wrong about this, but I also am prepared to be right. Lung function is way too important to be screwing around with.

Regardless of what we find, I am committed to educating others about the variety of symptoms that CF can take on. I know that until recently I have been fairly ignorant of this.

Thanks again for all of the input,
Sandy

 

[SandyCheeks]

Thanks for all of your encouragement! This site and all of you are such an incredible blessing.
<br />
<br />I have read your blogs prior to posting. I allow other to influence my thinking way to often. I have thought since my dd was young that there was something that was not right about her frequent infections but since none of the docs said anything I thought it was normal.
<br />
<br />I would love to be wrong about this, but I also am prepared to be right. Lung function is way too important to be screwing around with.
<br />
<br />Regardless of what we find, I am committed to educating others about the variety of symptoms that CF can take on. I know that until recently I have been fairly ignorant of this.
<br />
<br />Thanks again for all of the input,
<br />Sandy

 

[JennifersHope]

HI Sandy.. I am sorry that you are dealing with this... You are for sure right to go forward with testing... It won't be settled in your heart till you know for sure....

I will be thinking about you tomorrow as you daughter goes through all the testing...

Jennifer

 

[JennifersHope]

HI Sandy.. I am sorry that you are dealing with this... You are for sure right to go forward with testing... It won't be settled in your heart till you know for sure....

I will be thinking about you tomorrow as you daughter goes through all the testing...

Jennifer

 

[JennifersHope]

HI Sandy.. I am sorry that you are dealing with this... You are for sure right to go forward with testing... It won't be settled in your heart till you know for sure....

I will be thinking about you tomorrow as you daughter goes through all the testing...

Jennifer

 

[JennifersHope]

HI Sandy.. I am sorry that you are dealing with this... You are for sure right to go forward with testing... It won't be settled in your heart till you know for sure....

I will be thinking about you tomorrow as you daughter goes through all the testing...

Jennifer

 

[JennifersHope]

HI Sandy.. I am sorry that you are dealing with this... You are for sure right to go forward with testing... It won't be settled in your heart till you know for sure....
<br />
<br />I will be thinking about you tomorrow as you daughter goes through all the testing...
<br />
<br />Jennifer

 

[SandyCheeks]

Em's bronch went well today, they are sending a sample for culture so we will have results from that in a week or so. Her lungs looked good, is this any indication that it would not be CF???
Cilliary biopsy results are back and she does not have a motility issue. The doc (different that our clinic doc) who did the procedure said that he is not sure what the reason is for her issues but it is definately not CF. I told him I am still somewhat concerned due to all issues mentioned above and he said, 38 is a normal sweat chloride and if she had cf we would have seen alot more junk in her lungs. UGH!
Those of you who have been diagnosed a little later, where are you being seen? Perhaps our clinic is just not as up on some of this research/knowledge and we will need to go elsewhere to get answers.
I am frustrated of course.
Sandy

 

[SandyCheeks]

Em's bronch went well today, they are sending a sample for culture so we will have results from that in a week or so. Her lungs looked good, is this any indication that it would not be CF???
Cilliary biopsy results are back and she does not have a motility issue. The doc (different that our clinic doc) who did the procedure said that he is not sure what the reason is for her issues but it is definately not CF. I told him I am still somewhat concerned due to all issues mentioned above and he said, 38 is a normal sweat chloride and if she had cf we would have seen alot more junk in her lungs. UGH!
Those of you who have been diagnosed a little later, where are you being seen? Perhaps our clinic is just not as up on some of this research/knowledge and we will need to go elsewhere to get answers.
I am frustrated of course.
Sandy

 

[SandyCheeks]

Em's bronch went well today, they are sending a sample for culture so we will have results from that in a week or so. Her lungs looked good, is this any indication that it would not be CF???
Cilliary biopsy results are back and she does not have a motility issue. The doc (different that our clinic doc) who did the procedure said that he is not sure what the reason is for her issues but it is definately not CF. I told him I am still somewhat concerned due to all issues mentioned above and he said, 38 is a normal sweat chloride and if she had cf we would have seen alot more junk in her lungs. UGH!
Those of you who have been diagnosed a little later, where are you being seen? Perhaps our clinic is just not as up on some of this research/knowledge and we will need to go elsewhere to get answers.
I am frustrated of course.
Sandy

 

[SandyCheeks]

Em's bronch went well today, they are sending a sample for culture so we will have results from that in a week or so. Her lungs looked good, is this any indication that it would not be CF???
Cilliary biopsy results are back and she does not have a motility issue. The doc (different that our clinic doc) who did the procedure said that he is not sure what the reason is for her issues but it is definately not CF. I told him I am still somewhat concerned due to all issues mentioned above and he said, 38 is a normal sweat chloride and if she had cf we would have seen alot more junk in her lungs. UGH!
Those of you who have been diagnosed a little later, where are you being seen? Perhaps our clinic is just not as up on some of this research/knowledge and we will need to go elsewhere to get answers.
I am frustrated of course.
Sandy

 

[SandyCheeks]

Em's bronch went well today, they are sending a sample for culture so we will have results from that in a week or so. Her lungs looked good, is this any indication that it would not be CF???
<br />Cilliary biopsy results are back and she does not have a motility issue. The doc (different that our clinic doc) who did the procedure said that he is not sure what the reason is for her issues but it is definately not CF. I told him I am still somewhat concerned due to all issues mentioned above and he said, 38 is a normal sweat chloride and if she had cf we would have seen alot more junk in her lungs. UGH!
<br />Those of you who have been diagnosed a little later, where are you being seen? Perhaps our clinic is just not as up on some of this research/knowledge and we will need to go elsewhere to get answers.
<br />I am frustrated of course.
<br />Sandy

 

[JORDYSMOM]

I'm sorry Sandy. I know this is frustrating. I'm no doctor, but it seems to me, that if there were obvious signs of CF, we wouldn't have adult diagnosis. I just don't understand why it's so hard to get one blood test done. That's all you are asking for. If they would just run the full-panel DNA test, and tell you there were no matching mutations, then you could rule it out. I'd keep pushing. Good luck.

Stacey

 

[JORDYSMOM]

I'm sorry Sandy. I know this is frustrating. I'm no doctor, but it seems to me, that if there were obvious signs of CF, we wouldn't have adult diagnosis. I just don't understand why it's so hard to get one blood test done. That's all you are asking for. If they would just run the full-panel DNA test, and tell you there were no matching mutations, then you could rule it out. I'd keep pushing. Good luck.

Stacey

 

[JORDYSMOM]

I'm sorry Sandy. I know this is frustrating. I'm no doctor, but it seems to me, that if there were obvious signs of CF, we wouldn't have adult diagnosis. I just don't understand why it's so hard to get one blood test done. That's all you are asking for. If they would just run the full-panel DNA test, and tell you there were no matching mutations, then you could rule it out. I'd keep pushing. Good luck.

Stacey

 

[JORDYSMOM]

I'm sorry Sandy. I know this is frustrating. I'm no doctor, but it seems to me, that if there were obvious signs of CF, we wouldn't have adult diagnosis. I just don't understand why it's so hard to get one blood test done. That's all you are asking for. If they would just run the full-panel DNA test, and tell you there were no matching mutations, then you could rule it out. I'd keep pushing. Good luck.

Stacey

 

[JORDYSMOM]

I'm sorry Sandy. I know this is frustrating. I'm no doctor, but it seems to me, that if there were obvious signs of CF, we wouldn't have adult diagnosis. I just don't understand why it's so hard to get one blood test done. That's all you are asking for. If they would just run the full-panel DNA test, and tell you there were no matching mutations, then you could rule it out. I'd keep pushing. Good luck.
<br />
<br />Stacey