I need some input and support desperately!!!

breathe7

New member
this last pft i did my fev1 was .66...i know that sounds a extremely bad but do to a late diagnosis and many years of damage i have developed acute lung collapsibility....the minute i try to blow hard when the technician screams at you to blow my lungs snap shut...the fvc is a more accurate number to read my lung function due to that reason...the best i have ever had charted was 2.43 and was done right after diagnosis at age 20, 5 years ago...after first seeing my specialist and doing my first tune up in februaury that number had gotten back to 2.32...thats when we thought i was on the right track....its funny that you say that about TOBI...i actually asked my doctor about that on tuesday and he agreed that it could be causing irritation...i have however always been on the pulmozyme twice a day and had no problems...i am going to ask him about this allergy test for sure...i see him again this tuesday...we were also going to contimplate a bronchoscopy to make sure we aren't missing anything down there...i culture pseudomonous and mrsa...but have been clear of mrsa for about 2 months now, so just the pseudomonous last time....i was able to give a small culture sample this time so i'm curious to see what it says because my mucus production has been next to nothing...thanks you guys for so much feedback...it is very encouraging
 

breathe7

New member
this last pft i did my fev1 was .66...i know that sounds a extremely bad but do to a late diagnosis and many years of damage i have developed acute lung collapsibility....the minute i try to blow hard when the technician screams at you to blow my lungs snap shut...the fvc is a more accurate number to read my lung function due to that reason...the best i have ever had charted was 2.43 and was done right after diagnosis at age 20, 5 years ago...after first seeing my specialist and doing my first tune up in februaury that number had gotten back to 2.32...thats when we thought i was on the right track....its funny that you say that about TOBI...i actually asked my doctor about that on tuesday and he agreed that it could be causing irritation...i have however always been on the pulmozyme twice a day and had no problems...i am going to ask him about this allergy test for sure...i see him again this tuesday...we were also going to contimplate a bronchoscopy to make sure we aren't missing anything down there...i culture pseudomonous and mrsa...but have been clear of mrsa for about 2 months now, so just the pseudomonous last time....i was able to give a small culture sample this time so i'm curious to see what it says because my mucus production has been next to nothing...thanks you guys for so much feedback...it is very encouraging
 

breathe7

New member
this last pft i did my fev1 was .66...i know that sounds a extremely bad but do to a late diagnosis and many years of damage i have developed acute lung collapsibility....the minute i try to blow hard when the technician screams at you to blow my lungs snap shut...the fvc is a more accurate number to read my lung function due to that reason...the best i have ever had charted was 2.43 and was done right after diagnosis at age 20, 5 years ago...after first seeing my specialist and doing my first tune up in februaury that number had gotten back to 2.32...thats when we thought i was on the right track....its funny that you say that about TOBI...i actually asked my doctor about that on tuesday and he agreed that it could be causing irritation...i have however always been on the pulmozyme twice a day and had no problems...i am going to ask him about this allergy test for sure...i see him again this tuesday...we were also going to contimplate a bronchoscopy to make sure we aren't missing anything down there...i culture pseudomonous and mrsa...but have been clear of mrsa for about 2 months now, so just the pseudomonous last time....i was able to give a small culture sample this time so i'm curious to see what it says because my mucus production has been next to nothing...thanks you guys for so much feedback...it is very encouraging
 

breathe7

New member
this last pft i did my fev1 was .66...i know that sounds a extremely bad but do to a late diagnosis and many years of damage i have developed acute lung collapsibility....the minute i try to blow hard when the technician screams at you to blow my lungs snap shut...the fvc is a more accurate number to read my lung function due to that reason...the best i have ever had charted was 2.43 and was done right after diagnosis at age 20, 5 years ago...after first seeing my specialist and doing my first tune up in februaury that number had gotten back to 2.32...thats when we thought i was on the right track....its funny that you say that about TOBI...i actually asked my doctor about that on tuesday and he agreed that it could be causing irritation...i have however always been on the pulmozyme twice a day and had no problems...i am going to ask him about this allergy test for sure...i see him again this tuesday...we were also going to contimplate a bronchoscopy to make sure we aren't missing anything down there...i culture pseudomonous and mrsa...but have been clear of mrsa for about 2 months now, so just the pseudomonous last time....i was able to give a small culture sample this time so i'm curious to see what it says because my mucus production has been next to nothing...thanks you guys for so much feedback...it is very encouraging
 

breathe7

New member
this last pft i did my fev1 was .66...i know that sounds a extremely bad but do to a late diagnosis and many years of damage i have developed acute lung collapsibility....the minute i try to blow hard when the technician screams at you to blow my lungs snap shut...the fvc is a more accurate number to read my lung function due to that reason...the best i have ever had charted was 2.43 and was done right after diagnosis at age 20, 5 years ago...after first seeing my specialist and doing my first tune up in februaury that number had gotten back to 2.32...thats when we thought i was on the right track....its funny that you say that about TOBI...i actually asked my doctor about that on tuesday and he agreed that it could be causing irritation...i have however always been on the pulmozyme twice a day and had no problems...i am going to ask him about this allergy test for sure...i see him again this tuesday...we were also going to contimplate a bronchoscopy to make sure we aren't missing anything down there...i culture pseudomonous and mrsa...but have been clear of mrsa for about 2 months now, so just the pseudomonous last time....i was able to give a small culture sample this time so i'm curious to see what it says because my mucus production has been next to nothing...thanks you guys for so much feedback...it is very encouraging
 

breathe7

New member
Lindsey,

What was the oral antibiotic that your doc had put you on in substitute of your TOBI?? I know were not all the same but just curious...
 

breathe7

New member
Lindsey,

What was the oral antibiotic that your doc had put you on in substitute of your TOBI?? I know were not all the same but just curious...
 

breathe7

New member
Lindsey,

What was the oral antibiotic that your doc had put you on in substitute of your TOBI?? I know were not all the same but just curious...
 

breathe7

New member
Lindsey,

What was the oral antibiotic that your doc had put you on in substitute of your TOBI?? I know were not all the same but just curious...
 

breathe7

New member
Lindsey,
<br />
<br />What was the oral antibiotic that your doc had put you on in substitute of your TOBI?? I know were not all the same but just curious...
 

breathe7

New member
What exactly do I need to ask for when asking for the specific allergy test you had mentioned so I don't have to take a million of them to get the right one....LOL
 

breathe7

New member
What exactly do I need to ask for when asking for the specific allergy test you had mentioned so I don't have to take a million of them to get the right one....LOL
 

breathe7

New member
What exactly do I need to ask for when asking for the specific allergy test you had mentioned so I don't have to take a million of them to get the right one....LOL
 

breathe7

New member
What exactly do I need to ask for when asking for the specific allergy test you had mentioned so I don't have to take a million of them to get the right one....LOL
 

breathe7

New member
What exactly do I need to ask for when asking for the specific allergy test you had mentioned so I don't have to take a million of them to get the right one....LOL
 
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