I want...

Jeana

New member
Age 32

FEV1 80% in May, Will update Aug 4

Last IVs in Jan this year

Saveferris, when you say aggressively going on IVs, how often do you use them? Just when sick or regularly?
 

Jeana

New member
Age 32

FEV1 80% in May, Will update Aug 4

Last IVs in Jan this year

Saveferris, when you say aggressively going on IVs, how often do you use them? Just when sick or regularly?
 

Jeana

New member
Age 32

FEV1 80% in May, Will update Aug 4

Last IVs in Jan this year

Saveferris, when you say aggressively going on IVs, how often do you use them? Just when sick or regularly?
 

Jeana

New member
Age 32

FEV1 80% in May, Will update Aug 4

Last IVs in Jan this year

Saveferris, when you say aggressively going on IVs, how often do you use them? Just when sick or regularly?
 

Jeana

New member
Age 32
<br />
<br />FEV1 80% in May, Will update Aug 4
<br />
<br />Last IVs in Jan this year
<br />
<br />Saveferris, when you say aggressively going on IVs, how often do you use them? Just when sick or regularly?
 

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jeana</b></i>



Saveferris, when you say aggressively going on IVs, how often do you use them? Just when sick or regularly?</end quote></div>


Good question - when i'm showing any sign of an exacerbation (other than just a slight exacerbation due to a cold... does that make sense?) I go on IV's.

So I don't want too long to see if it will go away. I know for me, my PA flare ups don't go away.

I cough up blood frequently and the consensus from the 5 CF centers across the country I have been to is to start IV's during a hemo (not just streaking... i full on bleed).

So right now for example, a cold was going around my office and although I didn't have symptoms of the cold, I got very tired. And a few days later I started coughing up more gunk - leading me to believe that i caught the virus, successfully fought it off before getting symptoms, but this immune system distraction allowed my PA to grow.

So although I'm feeling a bit more gunky and slightly fatigued, I'm not running a fever and my exercise tolerance is fine.

BUT this isn't my baseline... at all. I can just tell this isn't an allergy or "this too shall pass" type of gunky.

So I'm on cycle for Colistin early and added Levo to the mix (PO).

So I consider this kind of a mild flare up, so no IV's, but definitely aggressive with the abx. Anytime we have a flare up, white blood cells and at the site of the infection full force, and it's these white blood cells that induce permanent lung damage.

Some disagree, but I'm off the mind that I'd rather be aggressive with abx and preserve lung function (1) because chances of me dying from being pan-resistant are lower than me dying from permanent lung damage (2) There may be some drugs coming down the pipeline that it would be nice to have high lung function for.


Anything other than this little flare up I have right now I would go straight to IV's.

Hope that all makes sense. Let me know if you need further clarification.
 

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jeana</b></i>



Saveferris, when you say aggressively going on IVs, how often do you use them? Just when sick or regularly?</end quote></div>


Good question - when i'm showing any sign of an exacerbation (other than just a slight exacerbation due to a cold... does that make sense?) I go on IV's.

So I don't want too long to see if it will go away. I know for me, my PA flare ups don't go away.

I cough up blood frequently and the consensus from the 5 CF centers across the country I have been to is to start IV's during a hemo (not just streaking... i full on bleed).

So right now for example, a cold was going around my office and although I didn't have symptoms of the cold, I got very tired. And a few days later I started coughing up more gunk - leading me to believe that i caught the virus, successfully fought it off before getting symptoms, but this immune system distraction allowed my PA to grow.

So although I'm feeling a bit more gunky and slightly fatigued, I'm not running a fever and my exercise tolerance is fine.

BUT this isn't my baseline... at all. I can just tell this isn't an allergy or "this too shall pass" type of gunky.

So I'm on cycle for Colistin early and added Levo to the mix (PO).

So I consider this kind of a mild flare up, so no IV's, but definitely aggressive with the abx. Anytime we have a flare up, white blood cells and at the site of the infection full force, and it's these white blood cells that induce permanent lung damage.

Some disagree, but I'm off the mind that I'd rather be aggressive with abx and preserve lung function (1) because chances of me dying from being pan-resistant are lower than me dying from permanent lung damage (2) There may be some drugs coming down the pipeline that it would be nice to have high lung function for.


Anything other than this little flare up I have right now I would go straight to IV's.

Hope that all makes sense. Let me know if you need further clarification.
 

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jeana</b></i>



Saveferris, when you say aggressively going on IVs, how often do you use them? Just when sick or regularly?</end quote></div>


Good question - when i'm showing any sign of an exacerbation (other than just a slight exacerbation due to a cold... does that make sense?) I go on IV's.

So I don't want too long to see if it will go away. I know for me, my PA flare ups don't go away.

I cough up blood frequently and the consensus from the 5 CF centers across the country I have been to is to start IV's during a hemo (not just streaking... i full on bleed).

So right now for example, a cold was going around my office and although I didn't have symptoms of the cold, I got very tired. And a few days later I started coughing up more gunk - leading me to believe that i caught the virus, successfully fought it off before getting symptoms, but this immune system distraction allowed my PA to grow.

So although I'm feeling a bit more gunky and slightly fatigued, I'm not running a fever and my exercise tolerance is fine.

BUT this isn't my baseline... at all. I can just tell this isn't an allergy or "this too shall pass" type of gunky.

So I'm on cycle for Colistin early and added Levo to the mix (PO).

So I consider this kind of a mild flare up, so no IV's, but definitely aggressive with the abx. Anytime we have a flare up, white blood cells and at the site of the infection full force, and it's these white blood cells that induce permanent lung damage.

Some disagree, but I'm off the mind that I'd rather be aggressive with abx and preserve lung function (1) because chances of me dying from being pan-resistant are lower than me dying from permanent lung damage (2) There may be some drugs coming down the pipeline that it would be nice to have high lung function for.


Anything other than this little flare up I have right now I would go straight to IV's.

Hope that all makes sense. Let me know if you need further clarification.
 

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jeana</b></i>



Saveferris, when you say aggressively going on IVs, how often do you use them? Just when sick or regularly?</end quote>


Good question - when i'm showing any sign of an exacerbation (other than just a slight exacerbation due to a cold... does that make sense?) I go on IV's.

So I don't want too long to see if it will go away. I know for me, my PA flare ups don't go away.

I cough up blood frequently and the consensus from the 5 CF centers across the country I have been to is to start IV's during a hemo (not just streaking... i full on bleed).

So right now for example, a cold was going around my office and although I didn't have symptoms of the cold, I got very tired. And a few days later I started coughing up more gunk - leading me to believe that i caught the virus, successfully fought it off before getting symptoms, but this immune system distraction allowed my PA to grow.

So although I'm feeling a bit more gunky and slightly fatigued, I'm not running a fever and my exercise tolerance is fine.

BUT this isn't my baseline... at all. I can just tell this isn't an allergy or "this too shall pass" type of gunky.

So I'm on cycle for Colistin early and added Levo to the mix (PO).

So I consider this kind of a mild flare up, so no IV's, but definitely aggressive with the abx. Anytime we have a flare up, white blood cells and at the site of the infection full force, and it's these white blood cells that induce permanent lung damage.

Some disagree, but I'm off the mind that I'd rather be aggressive with abx and preserve lung function (1) because chances of me dying from being pan-resistant are lower than me dying from permanent lung damage (2) There may be some drugs coming down the pipeline that it would be nice to have high lung function for.


Anything other than this little flare up I have right now I would go straight to IV's.

Hope that all makes sense. Let me know if you need further clarification.
 

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jeana</b></i>
<br />
<br />
<br />
<br />Saveferris, when you say aggressively going on IVs, how often do you use them? Just when sick or regularly?</end quote>
<br />
<br />
<br />Good question - when i'm showing any sign of an exacerbation (other than just a slight exacerbation due to a cold... does that make sense?) I go on IV's.
<br />
<br />So I don't want too long to see if it will go away. I know for me, my PA flare ups don't go away.
<br />
<br />I cough up blood frequently and the consensus from the 5 CF centers across the country I have been to is to start IV's during a hemo (not just streaking... i full on bleed).
<br />
<br />So right now for example, a cold was going around my office and although I didn't have symptoms of the cold, I got very tired. And a few days later I started coughing up more gunk - leading me to believe that i caught the virus, successfully fought it off before getting symptoms, but this immune system distraction allowed my PA to grow.
<br />
<br />So although I'm feeling a bit more gunky and slightly fatigued, I'm not running a fever and my exercise tolerance is fine.
<br />
<br />BUT this isn't my baseline... at all. I can just tell this isn't an allergy or "this too shall pass" type of gunky.
<br />
<br />So I'm on cycle for Colistin early and added Levo to the mix (PO).
<br />
<br />So I consider this kind of a mild flare up, so no IV's, but definitely aggressive with the abx. Anytime we have a flare up, white blood cells and at the site of the infection full force, and it's these white blood cells that induce permanent lung damage.
<br />
<br />Some disagree, but I'm off the mind that I'd rather be aggressive with abx and preserve lung function (1) because chances of me dying from being pan-resistant are lower than me dying from permanent lung damage (2) There may be some drugs coming down the pipeline that it would be nice to have high lung function for.
<br />
<br />
<br />Anything other than this little flare up I have right now I would go straight to IV's.
<br />
<br />Hope that all makes sense. Let me know if you need further clarification.
 

LouLou

New member
Age: 30
FEV1: 67%
Last IVs: 7/09 (this month)
I no longer have oral abx options so its straight to IVs for me when I'm exacerbating from my PA and/or MRSA.
 

LouLou

New member
Age: 30
FEV1: 67%
Last IVs: 7/09 (this month)
I no longer have oral abx options so its straight to IVs for me when I'm exacerbating from my PA and/or MRSA.
 

LouLou

New member
Age: 30
FEV1: 67%
Last IVs: 7/09 (this month)
I no longer have oral abx options so its straight to IVs for me when I'm exacerbating from my PA and/or MRSA.
 

LouLou

New member
Age: 30
FEV1: 67%
Last IVs: 7/09 (this month)
I no longer have oral abx options so its straight to IVs for me when I'm exacerbating from my PA and/or MRSA.
 

LouLou

New member
Age: 30
<br />FEV1: 67%
<br />Last IVs: 7/09 (this month)
<br />I no longer have oral abx options so its straight to IVs for me when I'm exacerbating from my PA and/or MRSA.
 
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