Exacerbations

ERINSBIZ · Sep 19, 2009

When do you consider an exacerbation is occurring? Is it a lower than norm pft that won't get back to baseline or just roller coaster pft's? Is it doing oral antibiotics every three months and that includes exhaustion w/o productive cough?

I am distraught on when it's time for ivs. It's been a 1 1/2 yr since last hospital visit with iv antibiotics.

ERINSBIZ · Sep 19, 2009

When do you consider an exacerbation is occurring? Is it a lower than norm pft that won't get back to baseline or just roller coaster pft's? Is it doing oral antibiotics every three months and that includes exhaustion w/o productive cough?

I am distraught on when it's time for ivs. It's been a 1 1/2 yr since last hospital visit with iv antibiotics.

ERINSBIZ · Sep 19, 2009

When do you consider an exacerbation is occurring? Is it a lower than norm pft that won't get back to baseline or just roller coaster pft's? Is it doing oral antibiotics every three months and that includes exhaustion w/o productive cough?

I am distraught on when it's time for ivs. It's been a 1 1/2 yr since last hospital visit with iv antibiotics.

ERINSBIZ · Sep 19, 2009

When do you consider an exacerbation is occurring? Is it a lower than norm pft that won't get back to baseline or just roller coaster pft's? Is it doing oral antibiotics every three months and that includes exhaustion w/o productive cough?

I am distraught on when it's time for ivs. It's been a 1 1/2 yr since last hospital visit with iv antibiotics.

ERINSBIZ · Sep 19, 2009

When do you consider an exacerbation is occurring? Is it a lower than norm pft that won't get back to baseline or just roller coaster pft's? Is it doing oral antibiotics every three months and that includes exhaustion w/o productive cough?
 
 I am distraught on when it's time for ivs. It's been a 1 1/2 yr since last hospital visit with iv antibiotics.

ladybug · Sep 19, 2009

All of my exacerbations are a little different each time, it seems. Sometimes I am run down and feel awful just walking around the house (tired, etc.) but my numbers may not be down very far. I'd still go on IV abx in these cases cause I just feel wore out and that my body needs them. Usually, my numbers bounce above my baseline on abx.

Sometimes, my numbers are rather low and this may or may not surprise me. If numbers are low but I'm surprised by that or not coughing much out (which is the case this week), the docs look at other things as causing the problem (i.e. inflammation, GERD, etc.) before recommending abx. When the numbers are low and I feel kinda crappy, I usually would still go on abx cause I feel its just something "brewing" that may get far far worse.

Aside from regulating my blood sugars, this is one of the worst things about the disease for me. I hate not knowing when to go in, and when you're down to very limited options due to adverse reactions from medications and even the docs don't want me to go on abx unless absolutely necessary, it is very stressful.

Oh, and with regard to not bringing anything up, my doc said that is one of the most classic signs that it is abx time... an INCREASE in sputum and thickness, etc. This has also thrown me for a loop lately cause for the last few months I'm coughing very very little up, even with treatments and huffing (and laughing, which ALWAYS brought stuff up before for me). So, the docs at my current clinic told me no matter how awful I feel, if I'm not coughing a bunch up, they want to see if something else is responsible before jumping to abx.

Hope this helps.

ladybug · Sep 19, 2009

All of my exacerbations are a little different each time, it seems. Sometimes I am run down and feel awful just walking around the house (tired, etc.) but my numbers may not be down very far. I'd still go on IV abx in these cases cause I just feel wore out and that my body needs them. Usually, my numbers bounce above my baseline on abx.

Sometimes, my numbers are rather low and this may or may not surprise me. If numbers are low but I'm surprised by that or not coughing much out (which is the case this week), the docs look at other things as causing the problem (i.e. inflammation, GERD, etc.) before recommending abx. When the numbers are low and I feel kinda crappy, I usually would still go on abx cause I feel its just something "brewing" that may get far far worse.

Aside from regulating my blood sugars, this is one of the worst things about the disease for me. I hate not knowing when to go in, and when you're down to very limited options due to adverse reactions from medications and even the docs don't want me to go on abx unless absolutely necessary, it is very stressful.

Oh, and with regard to not bringing anything up, my doc said that is one of the most classic signs that it is abx time... an INCREASE in sputum and thickness, etc. This has also thrown me for a loop lately cause for the last few months I'm coughing very very little up, even with treatments and huffing (and laughing, which ALWAYS brought stuff up before for me). So, the docs at my current clinic told me no matter how awful I feel, if I'm not coughing a bunch up, they want to see if something else is responsible before jumping to abx.

Hope this helps.

ladybug · Sep 19, 2009

All of my exacerbations are a little different each time, it seems. Sometimes I am run down and feel awful just walking around the house (tired, etc.) but my numbers may not be down very far. I'd still go on IV abx in these cases cause I just feel wore out and that my body needs them. Usually, my numbers bounce above my baseline on abx.

Sometimes, my numbers are rather low and this may or may not surprise me. If numbers are low but I'm surprised by that or not coughing much out (which is the case this week), the docs look at other things as causing the problem (i.e. inflammation, GERD, etc.) before recommending abx. When the numbers are low and I feel kinda crappy, I usually would still go on abx cause I feel its just something "brewing" that may get far far worse.

Aside from regulating my blood sugars, this is one of the worst things about the disease for me. I hate not knowing when to go in, and when you're down to very limited options due to adverse reactions from medications and even the docs don't want me to go on abx unless absolutely necessary, it is very stressful.

Oh, and with regard to not bringing anything up, my doc said that is one of the most classic signs that it is abx time... an INCREASE in sputum and thickness, etc. This has also thrown me for a loop lately cause for the last few months I'm coughing very very little up, even with treatments and huffing (and laughing, which ALWAYS brought stuff up before for me). So, the docs at my current clinic told me no matter how awful I feel, if I'm not coughing a bunch up, they want to see if something else is responsible before jumping to abx.

Hope this helps.

ladybug · Sep 19, 2009

All of my exacerbations are a little different each time, it seems. Sometimes I am run down and feel awful just walking around the house (tired, etc.) but my numbers may not be down very far. I'd still go on IV abx in these cases cause I just feel wore out and that my body needs them. Usually, my numbers bounce above my baseline on abx.

Sometimes, my numbers are rather low and this may or may not surprise me. If numbers are low but I'm surprised by that or not coughing much out (which is the case this week), the docs look at other things as causing the problem (i.e. inflammation, GERD, etc.) before recommending abx. When the numbers are low and I feel kinda crappy, I usually would still go on abx cause I feel its just something "brewing" that may get far far worse.

Aside from regulating my blood sugars, this is one of the worst things about the disease for me. I hate not knowing when to go in, and when you're down to very limited options due to adverse reactions from medications and even the docs don't want me to go on abx unless absolutely necessary, it is very stressful.

Oh, and with regard to not bringing anything up, my doc said that is one of the most classic signs that it is abx time... an INCREASE in sputum and thickness, etc. This has also thrown me for a loop lately cause for the last few months I'm coughing very very little up, even with treatments and huffing (and laughing, which ALWAYS brought stuff up before for me). So, the docs at my current clinic told me no matter how awful I feel, if I'm not coughing a bunch up, they want to see if something else is responsible before jumping to abx.

Hope this helps.

ladybug · Sep 19, 2009

All of my exacerbations are a little different each time, it seems. Sometimes I am run down and feel awful just walking around the house (tired, etc.) but my numbers may not be down very far. I'd still go on IV abx in these cases cause I just feel wore out and that my body needs them. Usually, my numbers bounce above my baseline on abx.
 
 Sometimes, my numbers are rather low and this may or may not surprise me. If numbers are low but I'm surprised by that or not coughing much out (which is the case this week), the docs look at other things as causing the problem (i.e. inflammation, GERD, etc.) before recommending abx. When the numbers are low and I feel kinda crappy, I usually would still go on abx cause I feel its just something "brewing" that may get far far worse.
 
 Aside from regulating my blood sugars, this is one of the worst things about the disease for me. I hate not knowing when to go in, and when you're down to very limited options due to adverse reactions from medications and even the docs don't want me to go on abx unless absolutely necessary, it is very stressful.
 
 Oh, and with regard to not bringing anything up, my doc said that is one of the most classic signs that it is abx time... an INCREASE in sputum and thickness, etc. This has also thrown me for a loop lately cause for the last few months I'm coughing very very little up, even with treatments and huffing (and laughing, which ALWAYS brought stuff up before for me). So, the docs at my current clinic told me no matter how awful I feel, if I'm not coughing a bunch up, they want to see if something else is responsible before jumping to abx.
 
 Hope this helps.

ladybug · Sep 19, 2009

Oh, and with regard to roller coaster pfts, according to my RT, you pft number varies quite a bit from day to day, let alone month to month. She said lots of things can effect it and it should be looked at sort of like blood pressure. That varies even by MINUTE. So, to focus on number alone when choosing abx is not always wise.

ladybug · Sep 19, 2009

Oh, and with regard to roller coaster pfts, according to my RT, you pft number varies quite a bit from day to day, let alone month to month. She said lots of things can effect it and it should be looked at sort of like blood pressure. That varies even by MINUTE. So, to focus on number alone when choosing abx is not always wise.

ladybug · Sep 19, 2009

Oh, and with regard to roller coaster pfts, according to my RT, you pft number varies quite a bit from day to day, let alone month to month. She said lots of things can effect it and it should be looked at sort of like blood pressure. That varies even by MINUTE. So, to focus on number alone when choosing abx is not always wise.

ladybug · Sep 19, 2009

Oh, and with regard to roller coaster pfts, according to my RT, you pft number varies quite a bit from day to day, let alone month to month. She said lots of things can effect it and it should be looked at sort of like blood pressure. That varies even by MINUTE. So, to focus on number alone when choosing abx is not always wise.

ladybug · Sep 19, 2009

Oh, and with regard to roller coaster pfts, according to my RT, you pft number varies quite a bit from day to day, let alone month to month. She said lots of things can effect it and it should be looked at sort of like blood pressure. That varies even by MINUTE. So, to focus on number alone when choosing abx is not always wise.

Lance2020x · Sep 19, 2009