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Gingerloveslife

New member
Hey I'm Ginger and I am a newcomer to this site. I was dx at 11, I am 27 yo, married, and have a five-year old son. My FEV1 has been baseline at 57-61% for about the last four years but in the last month in a half I have dropped to a FEV1 between 41-43%. After four weeks on iv cipro & aztreonam they have yet to budge. I was recently diagnosed with MDRPA and we are awaiting synergy lab tests to find new antibiotics. I also have severe anemia and depleted iron. My 02 sat was between 93-96% the whole time I was in the hospital, but in the past it never dropped below 97%. I was wondering if anyone else has had a significant drop like this so quickly without really having active pneumonia. Also what else should I be looking for. I just want my FEV1 to go back up!<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
G

Gingerloveslife

New member
Hey I'm Ginger and I am a newcomer to this site. I was dx at 11, I am 27 yo, married, and have a five-year old son. My FEV1 has been baseline at 57-61% for about the last four years but in the last month in a half I have dropped to a FEV1 between 41-43%. After four weeks on iv cipro & aztreonam they have yet to budge. I was recently diagnosed with MDRPA and we are awaiting synergy lab tests to find new antibiotics. I also have severe anemia and depleted iron. My 02 sat was between 93-96% the whole time I was in the hospital, but in the past it never dropped below 97%. I was wondering if anyone else has had a significant drop like this so quickly without really having active pneumonia. Also what else should I be looking for. I just want my FEV1 to go back up!<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
G

Gingerloveslife

New member
Hey I'm Ginger and I am a newcomer to this site. I was dx at 11, I am 27 yo, married, and have a five-year old son. My FEV1 has been baseline at 57-61% for about the last four years but in the last month in a half I have dropped to a FEV1 between 41-43%. After four weeks on iv cipro & aztreonam they have yet to budge. I was recently diagnosed with MDRPA and we are awaiting synergy lab tests to find new antibiotics. I also have severe anemia and depleted iron. My 02 sat was between 93-96% the whole time I was in the hospital, but in the past it never dropped below 97%. I was wondering if anyone else has had a significant drop like this so quickly without really having active pneumonia. Also what else should I be looking for. I just want my FEV1 to go back up!<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
G

Gingerloveslife

New member
Hey I'm Ginger and I am a newcomer to this site. I was dx at 11, I am 27 yo, married, and have a five-year old son. My FEV1 has been baseline at 57-61% for about the last four years but in the last month in a half I have dropped to a FEV1 between 41-43%. After four weeks on iv cipro & aztreonam they have yet to budge. I was recently diagnosed with MDRPA and we are awaiting synergy lab tests to find new antibiotics. I also have severe anemia and depleted iron. My 02 sat was between 93-96% the whole time I was in the hospital, but in the past it never dropped below 97%. I was wondering if anyone else has had a significant drop like this so quickly without really having active pneumonia. Also what else should I be looking for. I just want my FEV1 to go back up!<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
G

Gingerloveslife

New member
Hey I'm Ginger and I am a newcomer to this site. I was dx at 11, I am 27 yo, married, and have a five-year old son. My FEV1 has been baseline at 57-61% for about the last four years but in the last month in a half I have dropped to a FEV1 between 41-43%. After four weeks on iv cipro & aztreonam they have yet to budge. I was recently diagnosed with MDRPA and we are awaiting synergy lab tests to find new antibiotics. I also have severe anemia and depleted iron. My 02 sat was between 93-96% the whole time I was in the hospital, but in the past it never dropped below 97%. I was wondering if anyone else has had a significant drop like this so quickly without really having active pneumonia. Also what else should I be looking for. I just want my FEV1 to go back up!<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
N

NoExcuses

New member
Have you had a bronch?

Often times just coughing up sputum to discover what's growing in your lungs isn't accurate. getting a bronch will give a much more accurate picture of what bacteria are present and therefore which antibiotics to use.

All the best to you.
 
N

NoExcuses

New member
Have you had a bronch?

Often times just coughing up sputum to discover what's growing in your lungs isn't accurate. getting a bronch will give a much more accurate picture of what bacteria are present and therefore which antibiotics to use.

All the best to you.
 
N

NoExcuses

New member
Have you had a bronch?

Often times just coughing up sputum to discover what's growing in your lungs isn't accurate. getting a bronch will give a much more accurate picture of what bacteria are present and therefore which antibiotics to use.

All the best to you.
 
N

NoExcuses

New member
Have you had a bronch?

Often times just coughing up sputum to discover what's growing in your lungs isn't accurate. getting a bronch will give a much more accurate picture of what bacteria are present and therefore which antibiotics to use.

All the best to you.
 
N

NoExcuses

New member
Have you had a bronch?
<br />
<br />Often times just coughing up sputum to discover what's growing in your lungs isn't accurate. getting a bronch will give a much more accurate picture of what bacteria are present and therefore which antibiotics to use.
<br />
<br />All the best to you.
 
B

beleache

New member
Hi Ginger and welcome to the site.. My Fev1 runs about the same as yours 57-62.. My last big box test was at 62% and i was thrilled to say the least.. Although it went down 3 times in a row before this last test and i started to get nervous.. (i'm a big worry wart, blah)

I was getting nervous cause i have fairly new bug that the drs. are not treating me for as of yet, the treatment is harsh and they said if it is not harming me they would rather hold off on treatment.. But i started to freak (again) when the #'s started to go down. I didn't have pneumonia during any of this..

The only thing that i have done different during this time has been pulmo rehab.. I do believe that it has made a difference and plan to continue even though the first rehab i did is over..

My sat change depending on how im feeing , exercise, etc..

I hope the drs. get all under control soon ..Feel better ~ <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 
B

beleache

New member
Hi Ginger and welcome to the site.. My Fev1 runs about the same as yours 57-62.. My last big box test was at 62% and i was thrilled to say the least.. Although it went down 3 times in a row before this last test and i started to get nervous.. (i'm a big worry wart, blah)

I was getting nervous cause i have fairly new bug that the drs. are not treating me for as of yet, the treatment is harsh and they said if it is not harming me they would rather hold off on treatment.. But i started to freak (again) when the #'s started to go down. I didn't have pneumonia during any of this..

The only thing that i have done different during this time has been pulmo rehab.. I do believe that it has made a difference and plan to continue even though the first rehab i did is over..

My sat change depending on how im feeing , exercise, etc..

I hope the drs. get all under control soon ..Feel better ~ <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 
B

beleache

New member
Hi Ginger and welcome to the site.. My Fev1 runs about the same as yours 57-62.. My last big box test was at 62% and i was thrilled to say the least.. Although it went down 3 times in a row before this last test and i started to get nervous.. (i'm a big worry wart, blah)

I was getting nervous cause i have fairly new bug that the drs. are not treating me for as of yet, the treatment is harsh and they said if it is not harming me they would rather hold off on treatment.. But i started to freak (again) when the #'s started to go down. I didn't have pneumonia during any of this..

The only thing that i have done different during this time has been pulmo rehab.. I do believe that it has made a difference and plan to continue even though the first rehab i did is over..

My sat change depending on how im feeing , exercise, etc..

I hope the drs. get all under control soon ..Feel better ~ <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 
B

beleache

New member
Hi Ginger and welcome to the site.. My Fev1 runs about the same as yours 57-62.. My last big box test was at 62% and i was thrilled to say the least.. Although it went down 3 times in a row before this last test and i started to get nervous.. (i'm a big worry wart, blah)

I was getting nervous cause i have fairly new bug that the drs. are not treating me for as of yet, the treatment is harsh and they said if it is not harming me they would rather hold off on treatment.. But i started to freak (again) when the #'s started to go down. I didn't have pneumonia during any of this..

The only thing that i have done different during this time has been pulmo rehab.. I do believe that it has made a difference and plan to continue even though the first rehab i did is over..

My sat change depending on how im feeing , exercise, etc..

I hope the drs. get all under control soon ..Feel better ~ <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 
B

beleache

New member
Hi Ginger and welcome to the site.. My Fev1 runs about the same as yours 57-62.. My last big box test was at 62% and i was thrilled to say the least.. Although it went down 3 times in a row before this last test and i started to get nervous.. (i'm a big worry wart, blah)
<br />
<br /> I was getting nervous cause i have fairly new bug that the drs. are not treating me for as of yet, the treatment is harsh and they said if it is not harming me they would rather hold off on treatment.. But i started to freak (again) when the #'s started to go down. I didn't have pneumonia during any of this..
<br />
<br />The only thing that i have done different during this time has been pulmo rehab.. I do believe that it has made a difference and plan to continue even though the first rehab i did is over..
<br />
<br />My sat change depending on how im feeing , exercise, etc..
<br />
<br />I hope the drs. get all under control soon ..Feel better ~ <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 
G

Gingerloveslife

New member
No bronch. My doctor said it could just push me down farther?.. I did have the same problem when I was 16 though and the bronch showed I had Mycobacterium abcessus even though my sputum cultures did not show it. Maybe I should push for the bronch. Thanks for your opinion <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
G

Gingerloveslife

New member
No bronch. My doctor said it could just push me down farther?.. I did have the same problem when I was 16 though and the bronch showed I had Mycobacterium abcessus even though my sputum cultures did not show it. Maybe I should push for the bronch. Thanks for your opinion <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
G

Gingerloveslife

New member
No bronch. My doctor said it could just push me down farther?.. I did have the same problem when I was 16 though and the bronch showed I had Mycobacterium abcessus even though my sputum cultures did not show it. Maybe I should push for the bronch. Thanks for your opinion <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
G

Gingerloveslife

New member
No bronch. My doctor said it could just push me down farther?.. I did have the same problem when I was 16 though and the bronch showed I had Mycobacterium abcessus even though my sputum cultures did not show it. Maybe I should push for the bronch. Thanks for your opinion <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
G

Gingerloveslife

New member
No bronch. My doctor said it could just push me down farther?.. I did have the same problem when I was 16 though and the bronch showed I had Mycobacterium abcessus even though my sputum cultures did not show it. Maybe I should push for the bronch. Thanks for your opinion <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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