When did you get / start IV Antibiotics...

Juliet · Jun 15, 2008

I know lots of you have been in for "TuneUps" several times a year. I was wondering what in your specific history of CF has led your doctor to prescribe that kind of treatment. Having only been recently DXd with CF I've never been on IV antibiotics before. I'm curious why the doctors think it will benefit you. Is it purely a preventative treatment? Or is it because you regularly culture a specific bug? When did you start on regular IV antibiotic treatments? And did you ever stop them and just go to a 'flare up' type schedule?

I'm asking this because I'm curious if this is in store for me in the future - and when that future might happen. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Is it a matter of the philosophy of the doctor or if there are specific clinical things that lead to the adoption of that kind of treatment?

I mean I'm 43 and have survived this far, relatively healthy (CF speaking) <img src="i/expressions/face-icon-small-smile.gif" border="0"> without them... But maybe that's just been pure dumb luck!

Thanks, ~Juliet

Juliet · Jun 15, 2008

I know lots of you have been in for "TuneUps" several times a year. I was wondering what in your specific history of CF has led your doctor to prescribe that kind of treatment. Having only been recently DXd with CF I've never been on IV antibiotics before. I'm curious why the doctors think it will benefit you. Is it purely a preventative treatment? Or is it because you regularly culture a specific bug? When did you start on regular IV antibiotic treatments? And did you ever stop them and just go to a 'flare up' type schedule?

I'm asking this because I'm curious if this is in store for me in the future - and when that future might happen. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Is it a matter of the philosophy of the doctor or if there are specific clinical things that lead to the adoption of that kind of treatment?

I mean I'm 43 and have survived this far, relatively healthy (CF speaking) <img src="i/expressions/face-icon-small-smile.gif" border="0"> without them... But maybe that's just been pure dumb luck!

Thanks, ~Juliet

Juliet · Jun 15, 2008

I know lots of you have been in for "TuneUps" several times a year. I was wondering what in your specific history of CF has led your doctor to prescribe that kind of treatment. Having only been recently DXd with CF I've never been on IV antibiotics before. I'm curious why the doctors think it will benefit you. Is it purely a preventative treatment? Or is it because you regularly culture a specific bug? When did you start on regular IV antibiotic treatments? And did you ever stop them and just go to a 'flare up' type schedule?

I'm asking this because I'm curious if this is in store for me in the future - and when that future might happen. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Is it a matter of the philosophy of the doctor or if there are specific clinical things that lead to the adoption of that kind of treatment?

I mean I'm 43 and have survived this far, relatively healthy (CF speaking) <img src="i/expressions/face-icon-small-smile.gif" border="0"> without them... But maybe that's just been pure dumb luck!

Thanks, ~Juliet

Juliet · Jun 15, 2008

I know lots of you have been in for "TuneUps" several times a year. I was wondering what in your specific history of CF has led your doctor to prescribe that kind of treatment. Having only been recently DXd with CF I've never been on IV antibiotics before. I'm curious why the doctors think it will benefit you. Is it purely a preventative treatment? Or is it because you regularly culture a specific bug? When did you start on regular IV antibiotic treatments? And did you ever stop them and just go to a 'flare up' type schedule?

I'm asking this because I'm curious if this is in store for me in the future - and when that future might happen. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Is it a matter of the philosophy of the doctor or if there are specific clinical things that lead to the adoption of that kind of treatment?

I mean I'm 43 and have survived this far, relatively healthy (CF speaking) <img src="i/expressions/face-icon-small-smile.gif" border="0"> without them... But maybe that's just been pure dumb luck!

Thanks, ~Juliet

Juliet · Jun 15, 2008

I know lots of you have been in for "TuneUps" several times a year. I was wondering what in your specific history of CF has led your doctor to prescribe that kind of treatment. Having only been recently DXd with CF I've never been on IV antibiotics before. I'm curious why the doctors think it will benefit you. Is it purely a preventative treatment? Or is it because you regularly culture a specific bug? When did you start on regular IV antibiotic treatments? And did you ever stop them and just go to a 'flare up' type schedule?
 
 I'm asking this because I'm curious if this is in store for me in the future - and when that future might happen. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Is it a matter of the philosophy of the doctor or if there are specific clinical things that lead to the adoption of that kind of treatment?
 
 I mean I'm 43 and have survived this far, relatively healthy (CF speaking) <img src="i/expressions/face-icon-small-smile.gif" border="0"> without them... But maybe that's just been pure dumb luck!
 
 Thanks, ~Juliet

JazzysMom · Jun 15, 2008

I only did a preventative tune up one time in my twenties & I ended up back in the hospital for an actual exacerbation so I stop doing preventative. It gave me a bitter taste to the idea with my experience.

Now when I feel like crap, my PFTS & Xrays indicate a problem & its beyond handling with orals is when I get iv's. Basically I know its time & I call them.

I do culture PA regularly so when things flare up its usually that tho I have cultured MRSA in the past!

JazzysMom · Jun 15, 2008

I only did a preventative tune up one time in my twenties & I ended up back in the hospital for an actual exacerbation so I stop doing preventative. It gave me a bitter taste to the idea with my experience.

Now when I feel like crap, my PFTS & Xrays indicate a problem & its beyond handling with orals is when I get iv's. Basically I know its time & I call them.

I do culture PA regularly so when things flare up its usually that tho I have cultured MRSA in the past!

JazzysMom · Jun 15, 2008

I only did a preventative tune up one time in my twenties & I ended up back in the hospital for an actual exacerbation so I stop doing preventative. It gave me a bitter taste to the idea with my experience.

Now when I feel like crap, my PFTS & Xrays indicate a problem & its beyond handling with orals is when I get iv's. Basically I know its time & I call them.

I do culture PA regularly so when things flare up its usually that tho I have cultured MRSA in the past!

JazzysMom · Jun 15, 2008

I only did a preventative tune up one time in my twenties & I ended up back in the hospital for an actual exacerbation so I stop doing preventative. It gave me a bitter taste to the idea with my experience.

Now when I feel like crap, my PFTS & Xrays indicate a problem & its beyond handling with orals is when I get iv's. Basically I know its time & I call them.

I do culture PA regularly so when things flare up its usually that tho I have cultured MRSA in the past!

JazzysMom · Jun 15, 2008

I only did a preventative tune up one time in my twenties & I ended up back in the hospital for an actual exacerbation so I stop doing preventative. It gave me a bitter taste to the idea with my experience.
 
 Now when I feel like crap, my PFTS & Xrays indicate a problem & its beyond handling with orals is when I get iv's. Basically I know its time & I call them.
 
 
 I do culture PA regularly so when things flare up its usually that tho I have cultured MRSA in the past!

bittyhorse23 · Jun 15, 2008

I usually go on IVs when my PFTs drop, I loose weight (significant amount not just a lb or 2), have a hard time breathing, or catch something like a cold or the flu. I know when I am feeling crappy and need something stronger than my already 3 orals and TOBI. I will call for an appt and go in and usually he agrees with me. Only once did he let me go home feeling crappy but I recovered from that one so I guess he knew <img src="i/expressions/face-icon-small-smile.gif" border="0">

I regularly culture PA so when I catch something like a cold it flares up and that is what usually sets me up for IVs. I didn't need my first round of IVs until I was 18. Orals worked well for me up until then.

You will get to know your body and what you need. You will be able to read the signs after some time. It takes some work to realize what is going on and if what you feel is ok or if it is time to call the DR.

<img src="i/expressions/heart.gif" border="0">

bittyhorse23 · Jun 15, 2008

I usually go on IVs when my PFTs drop, I loose weight (significant amount not just a lb or 2), have a hard time breathing, or catch something like a cold or the flu. I know when I am feeling crappy and need something stronger than my already 3 orals and TOBI. I will call for an appt and go in and usually he agrees with me. Only once did he let me go home feeling crappy but I recovered from that one so I guess he knew <img src="i/expressions/face-icon-small-smile.gif" border="0">

I regularly culture PA so when I catch something like a cold it flares up and that is what usually sets me up for IVs. I didn't need my first round of IVs until I was 18. Orals worked well for me up until then.

You will get to know your body and what you need. You will be able to read the signs after some time. It takes some work to realize what is going on and if what you feel is ok or if it is time to call the DR.

<img src="i/expressions/heart.gif" border="0">

bittyhorse23 · Jun 15, 2008

I usually go on IVs when my PFTs drop, I loose weight (significant amount not just a lb or 2), have a hard time breathing, or catch something like a cold or the flu. I know when I am feeling crappy and need something stronger than my already 3 orals and TOBI. I will call for an appt and go in and usually he agrees with me. Only once did he let me go home feeling crappy but I recovered from that one so I guess he knew <img src="i/expressions/face-icon-small-smile.gif" border="0">

I regularly culture PA so when I catch something like a cold it flares up and that is what usually sets me up for IVs. I didn't need my first round of IVs until I was 18. Orals worked well for me up until then.

You will get to know your body and what you need. You will be able to read the signs after some time. It takes some work to realize what is going on and if what you feel is ok or if it is time to call the DR.

<img src="i/expressions/heart.gif" border="0">

bittyhorse23 · Jun 15, 2008

I usually go on IVs when my PFTs drop, I loose weight (significant amount not just a lb or 2), have a hard time breathing, or catch something like a cold or the flu. I know when I am feeling crappy and need something stronger than my already 3 orals and TOBI. I will call for an appt and go in and usually he agrees with me. Only once did he let me go home feeling crappy but I recovered from that one so I guess he knew <img src="i/expressions/face-icon-small-smile.gif" border="0">

I regularly culture PA so when I catch something like a cold it flares up and that is what usually sets me up for IVs. I didn't need my first round of IVs until I was 18. Orals worked well for me up until then.

You will get to know your body and what you need. You will be able to read the signs after some time. It takes some work to realize what is going on and if what you feel is ok or if it is time to call the DR.

<img src="i/expressions/heart.gif" border="0">

bittyhorse23 · Jun 15, 2008

I usually go on IVs when my PFTs drop, I loose weight (significant amount not just a lb or 2), have a hard time breathing, or catch something like a cold or the flu. I know when I am feeling crappy and need something stronger than my already 3 orals and TOBI. I will call for an appt and go in and usually he agrees with me. Only once did he let me go home feeling crappy but I recovered from that one so I guess he knew <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 I regularly culture PA so when I catch something like a cold it flares up and that is what usually sets me up for IVs. I didn't need my first round of IVs until I was 18. Orals worked well for me up until then.
 
 You will get to know your body and what you need. You will be able to read the signs after some time. It takes some work to realize what is going on and if what you feel is ok or if it is time to call the DR.
 
 <img src="i/expressions/heart.gif" border="0">

Emily65Roses · Jun 15, 2008

I do tune-ups basically when I tell my doc I need one. If my PFTs go down and my coughing goes up and gets in the way more, I tell my doc, and he goes "okay, let's maybe try an oral first" and then when the oral doesn't work (he always tries Cipro and it doesn't seem to work anymore), we go to IVs. I am currently finishing IVs because I did Cipro the end of May and it didn't work.

If my PFTs have a pretty big drop (a big drop for me, mind you), John likes to put me on IVs. Like my PFTs are usually right around 100%, and the last time he put me on IVs because of my PFTs, they had dropped to 91%. Still a wonderful number, but that's a big drop for me. More often, though, it's when I say "I feel crappy, help" and he puts me on meds.

It's basically when I notice it getting in the way more. When I'm sicker (and in need of IVs), a few things change. For one, when I get up in the morning to pee, I can't go back to sleep. I cough because I got up, and it lasts so long, I wake up. That means I'm sicker (usually I can get up to pee, go back to bed, and fall right back asleep). If coughing keeps me awake at night, I'm sicker. If I'm gagging more because the coughing fits are so rough, I'm sicker. It's just personal stuff I notice changing, really.

As for the bacteria, I always culture a little list of stuff. I have 4 different pseudomonases, staph, and I had MRSA in 01 (though I have not seen it since). So the bacteria doesn't really call for IVs. It's always there. It's basically when I feel like it's acting up.

And as a last note, for me, I do IVs at home. I have a port, so I don't have to go into the hospital at all. As long as John is using meds I've already been on, no hospital time at all is needed. I have been on IVs about once or twice a year since 2000, and I haven't been actually in patient since... 2004, I believe.

I hope all that babbling nonsense helps. Haha.

Emily65Roses · Jun 15, 2008

I do tune-ups basically when I tell my doc I need one. If my PFTs go down and my coughing goes up and gets in the way more, I tell my doc, and he goes "okay, let's maybe try an oral first" and then when the oral doesn't work (he always tries Cipro and it doesn't seem to work anymore), we go to IVs. I am currently finishing IVs because I did Cipro the end of May and it didn't work.

If my PFTs have a pretty big drop (a big drop for me, mind you), John likes to put me on IVs. Like my PFTs are usually right around 100%, and the last time he put me on IVs because of my PFTs, they had dropped to 91%. Still a wonderful number, but that's a big drop for me. More often, though, it's when I say "I feel crappy, help" and he puts me on meds.

It's basically when I notice it getting in the way more. When I'm sicker (and in need of IVs), a few things change. For one, when I get up in the morning to pee, I can't go back to sleep. I cough because I got up, and it lasts so long, I wake up. That means I'm sicker (usually I can get up to pee, go back to bed, and fall right back asleep). If coughing keeps me awake at night, I'm sicker. If I'm gagging more because the coughing fits are so rough, I'm sicker. It's just personal stuff I notice changing, really.

As for the bacteria, I always culture a little list of stuff. I have 4 different pseudomonases, staph, and I had MRSA in 01 (though I have not seen it since). So the bacteria doesn't really call for IVs. It's always there. It's basically when I feel like it's acting up.

And as a last note, for me, I do IVs at home. I have a port, so I don't have to go into the hospital at all. As long as John is using meds I've already been on, no hospital time at all is needed. I have been on IVs about once or twice a year since 2000, and I haven't been actually in patient since... 2004, I believe.

I hope all that babbling nonsense helps. Haha.

Emily65Roses · Jun 15, 2008

I do tune-ups basically when I tell my doc I need one. If my PFTs go down and my coughing goes up and gets in the way more, I tell my doc, and he goes "okay, let's maybe try an oral first" and then when the oral doesn't work (he always tries Cipro and it doesn't seem to work anymore), we go to IVs. I am currently finishing IVs because I did Cipro the end of May and it didn't work.

If my PFTs have a pretty big drop (a big drop for me, mind you), John likes to put me on IVs. Like my PFTs are usually right around 100%, and the last time he put me on IVs because of my PFTs, they had dropped to 91%. Still a wonderful number, but that's a big drop for me. More often, though, it's when I say "I feel crappy, help" and he puts me on meds.

It's basically when I notice it getting in the way more. When I'm sicker (and in need of IVs), a few things change. For one, when I get up in the morning to pee, I can't go back to sleep. I cough because I got up, and it lasts so long, I wake up. That means I'm sicker (usually I can get up to pee, go back to bed, and fall right back asleep). If coughing keeps me awake at night, I'm sicker. If I'm gagging more because the coughing fits are so rough, I'm sicker. It's just personal stuff I notice changing, really.

As for the bacteria, I always culture a little list of stuff. I have 4 different pseudomonases, staph, and I had MRSA in 01 (though I have not seen it since). So the bacteria doesn't really call for IVs. It's always there. It's basically when I feel like it's acting up.

And as a last note, for me, I do IVs at home. I have a port, so I don't have to go into the hospital at all. As long as John is using meds I've already been on, no hospital time at all is needed. I have been on IVs about once or twice a year since 2000, and I haven't been actually in patient since... 2004, I believe.

I hope all that babbling nonsense helps. Haha.

Emily65Roses · Jun 15, 2008

I do tune-ups basically when I tell my doc I need one. If my PFTs go down and my coughing goes up and gets in the way more, I tell my doc, and he goes "okay, let's maybe try an oral first" and then when the oral doesn't work (he always tries Cipro and it doesn't seem to work anymore), we go to IVs. I am currently finishing IVs because I did Cipro the end of May and it didn't work.

If my PFTs have a pretty big drop (a big drop for me, mind you), John likes to put me on IVs. Like my PFTs are usually right around 100%, and the last time he put me on IVs because of my PFTs, they had dropped to 91%. Still a wonderful number, but that's a big drop for me. More often, though, it's when I say "I feel crappy, help" and he puts me on meds.

It's basically when I notice it getting in the way more. When I'm sicker (and in need of IVs), a few things change. For one, when I get up in the morning to pee, I can't go back to sleep. I cough because I got up, and it lasts so long, I wake up. That means I'm sicker (usually I can get up to pee, go back to bed, and fall right back asleep). If coughing keeps me awake at night, I'm sicker. If I'm gagging more because the coughing fits are so rough, I'm sicker. It's just personal stuff I notice changing, really.

As for the bacteria, I always culture a little list of stuff. I have 4 different pseudomonases, staph, and I had MRSA in 01 (though I have not seen it since). So the bacteria doesn't really call for IVs. It's always there. It's basically when I feel like it's acting up.

And as a last note, for me, I do IVs at home. I have a port, so I don't have to go into the hospital at all. As long as John is using meds I've already been on, no hospital time at all is needed. I have been on IVs about once or twice a year since 2000, and I haven't been actually in patient since... 2004, I believe.

I hope all that babbling nonsense helps. Haha.

Emily65Roses · Jun 15, 2008

I do tune-ups basically when I tell my doc I need one. If my PFTs go down and my coughing goes up and gets in the way more, I tell my doc, and he goes "okay, let's maybe try an oral first" and then when the oral doesn't work (he always tries Cipro and it doesn't seem to work anymore), we go to IVs. I am currently finishing IVs because I did Cipro the end of May and it didn't work.
 
 If my PFTs have a pretty big drop (a big drop for me, mind you), John likes to put me on IVs. Like my PFTs are usually right around 100%, and the last time he put me on IVs because of my PFTs, they had dropped to 91%. Still a wonderful number, but that's a big drop for me. More often, though, it's when I say "I feel crappy, help" and he puts me on meds.
 
 It's basically when I notice it getting in the way more. When I'm sicker (and in need of IVs), a few things change. For one, when I get up in the morning to pee, I can't go back to sleep. I cough because I got up, and it lasts so long, I wake up. That means I'm sicker (usually I can get up to pee, go back to bed, and fall right back asleep). If coughing keeps me awake at night, I'm sicker. If I'm gagging more because the coughing fits are so rough, I'm sicker. It's just personal stuff I notice changing, really.
 
 As for the bacteria, I always culture a little list of stuff. I have 4 different pseudomonases, staph, and I had MRSA in 01 (though I have not seen it since). So the bacteria doesn't really call for IVs. It's always there. It's basically when I feel like it's acting up.
 
 And as a last note, for me, I do IVs at home. I have a port, so I don't have to go into the hospital at all. As long as John is using meds I've already been on, no hospital time at all is needed. I have been on IVs about once or twice a year since 2000, and I haven't been actually in patient since... 2004, I believe.
 
 I hope all that babbling nonsense helps. Haha.

When did you get / start IV Antibiotics...

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