Adam

adamsants

New member
Adam's pfts have been going down recently (under 50). This is after spending 7 weeks in the hospital back in October the 23 til Dec the 13th...he had a fungus growing (not aspergillus). he was put on aphro b ivs for 1 month and then sent home with vfend and has been on for 6 months.

Ct scan looks great fungus is 90 percent gone...lungs look great.

but lung function keeps going down. The dr. does not know why He is consulting with the other drs and they are going to see if what else they can think of.

Is there anything that I should be asking,

He is on Xopenex, Hypertonic Saline, pulmozyme, qvar and tobi for breathing treatments in addition to the vest and pep.

I feel like I am missing something or not asking something that I should.

Adam says he feels fine, looks good and still runs around like crazy. I am worried and don't know what else to do about his pfts.

Help!!!!

Sorry this is so long, I never really ask for help and I took awhile for me to post and ask for help. Again I don't know what else to do.

Thanks for any feedback in advance.

I should also say he is not growing anything other that PA.
 

adamsants

New member
Adam's pfts have been going down recently (under 50). This is after spending 7 weeks in the hospital back in October the 23 til Dec the 13th...he had a fungus growing (not aspergillus). he was put on aphro b ivs for 1 month and then sent home with vfend and has been on for 6 months.

Ct scan looks great fungus is 90 percent gone...lungs look great.

but lung function keeps going down. The dr. does not know why He is consulting with the other drs and they are going to see if what else they can think of.

Is there anything that I should be asking,

He is on Xopenex, Hypertonic Saline, pulmozyme, qvar and tobi for breathing treatments in addition to the vest and pep.

I feel like I am missing something or not asking something that I should.

Adam says he feels fine, looks good and still runs around like crazy. I am worried and don't know what else to do about his pfts.

Help!!!!

Sorry this is so long, I never really ask for help and I took awhile for me to post and ask for help. Again I don't know what else to do.

Thanks for any feedback in advance.

I should also say he is not growing anything other that PA.
 

adamsants

New member
Adam's pfts have been going down recently (under 50). This is after spending 7 weeks in the hospital back in October the 23 til Dec the 13th...he had a fungus growing (not aspergillus). he was put on aphro b ivs for 1 month and then sent home with vfend and has been on for 6 months.

Ct scan looks great fungus is 90 percent gone...lungs look great.

but lung function keeps going down. The dr. does not know why He is consulting with the other drs and they are going to see if what else they can think of.

Is there anything that I should be asking,

He is on Xopenex, Hypertonic Saline, pulmozyme, qvar and tobi for breathing treatments in addition to the vest and pep.

I feel like I am missing something or not asking something that I should.

Adam says he feels fine, looks good and still runs around like crazy. I am worried and don't know what else to do about his pfts.

Help!!!!

Sorry this is so long, I never really ask for help and I took awhile for me to post and ask for help. Again I don't know what else to do.

Thanks for any feedback in advance.

I should also say he is not growing anything other that PA.
 

adamsants

New member
Adam's pfts have been going down recently (under 50). This is after spending 7 weeks in the hospital back in October the 23 til Dec the 13th...he had a fungus growing (not aspergillus). he was put on aphro b ivs for 1 month and then sent home with vfend and has been on for 6 months.

Ct scan looks great fungus is 90 percent gone...lungs look great.

but lung function keeps going down. The dr. does not know why He is consulting with the other drs and they are going to see if what else they can think of.

Is there anything that I should be asking,

He is on Xopenex, Hypertonic Saline, pulmozyme, qvar and tobi for breathing treatments in addition to the vest and pep.

I feel like I am missing something or not asking something that I should.

Adam says he feels fine, looks good and still runs around like crazy. I am worried and don't know what else to do about his pfts.

Help!!!!

Sorry this is so long, I never really ask for help and I took awhile for me to post and ask for help. Again I don't know what else to do.

Thanks for any feedback in advance.

I should also say he is not growing anything other that PA.
 

adamsants

New member
Adam's pfts have been going down recently (under 50). This is after spending 7 weeks in the hospital back in October the 23 til Dec the 13th...he had a fungus growing (not aspergillus). he was put on aphro b ivs for 1 month and then sent home with vfend and has been on for 6 months.
<br />
<br />Ct scan looks great fungus is 90 percent gone...lungs look great.
<br />
<br />but lung function keeps going down. The dr. does not know why He is consulting with the other drs and they are going to see if what else they can think of.
<br />
<br />Is there anything that I should be asking,
<br />
<br />He is on Xopenex, Hypertonic Saline, pulmozyme, qvar and tobi for breathing treatments in addition to the vest and pep.
<br />
<br />I feel like I am missing something or not asking something that I should.
<br />
<br />Adam says he feels fine, looks good and still runs around like crazy. I am worried and don't know what else to do about his pfts.
<br />
<br />Help!!!!
<br />
<br />Sorry this is so long, I never really ask for help and I took awhile for me to post and ask for help. Again I don't know what else to do.
<br />
<br />Thanks for any feedback in advance.
<br />
<br />I should also say he is not growing anything other that PA.
 

JazzysMom

New member
How is his appetite?

Remind me....does he have CFRD? Something to check on if not

I know it is a frustrating & draining time for you!

HUGS
 

JazzysMom

New member
How is his appetite?

Remind me....does he have CFRD? Something to check on if not

I know it is a frustrating & draining time for you!

HUGS
 

JazzysMom

New member
How is his appetite?

Remind me....does he have CFRD? Something to check on if not

I know it is a frustrating & draining time for you!

HUGS
 

JazzysMom

New member
How is his appetite?

Remind me....does he have CFRD? Something to check on if not

I know it is a frustrating & draining time for you!

HUGS
 

JazzysMom

New member
How is his appetite?
<br />
<br />Remind me....does he have CFRD? Something to check on if not
<br />
<br />I know it is a frustrating & draining time for you!
<br />
<br />HUGS
 

Havoc

New member
does he have a significant asthma component to his CF? I do and found that the hypertonic saline caused quite a bit of bronchospasm even when pre-medicated with albuterol.
 

Havoc

New member
does he have a significant asthma component to his CF? I do and found that the hypertonic saline caused quite a bit of bronchospasm even when pre-medicated with albuterol.
 

Havoc

New member
does he have a significant asthma component to his CF? I do and found that the hypertonic saline caused quite a bit of bronchospasm even when pre-medicated with albuterol.
 

Havoc

New member
does he have a significant asthma component to his CF? I do and found that the hypertonic saline caused quite a bit of bronchospasm even when pre-medicated with albuterol.
 

Havoc

New member
does he have a significant asthma component to his CF? I do and found that the hypertonic saline caused quite a bit of bronchospasm even when pre-medicated with albuterol.
 

adamsants

New member
Mel...his appetite has never been great....and no he does not have cfrd..but we go again to check and rule that out.

Jonathan the drs say he does not have asthma...they hav tested with the pre and post test.
 

adamsants

New member
Mel...his appetite has never been great....and no he does not have cfrd..but we go again to check and rule that out.

Jonathan the drs say he does not have asthma...they hav tested with the pre and post test.
 

adamsants

New member
Mel...his appetite has never been great....and no he does not have cfrd..but we go again to check and rule that out.

Jonathan the drs say he does not have asthma...they hav tested with the pre and post test.
 

adamsants

New member
Mel...his appetite has never been great....and no he does not have cfrd..but we go again to check and rule that out.

Jonathan the drs say he does not have asthma...they hav tested with the pre and post test.
 

adamsants

New member
Mel...his appetite has never been great....and no he does not have cfrd..but we go again to check and rule that out.
<br />
<br />Jonathan the drs say he does not have asthma...they hav tested with the pre and post test.
 
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