When did you get / start IV Antibiotics...

J

jodijp

New member
Even though I was Dx at 25, I didn't experience my first PICC and IV Abx round until I was 44. Up to that time, the orals seemed to do the job just fine. <img src="i/expressions/face-icon-small-smile.gif" border="0"> But there comes a point, and you will know it, when the orals do don't squat anymore. You can just tell how you feel that you need more.

There is no crystal ball of when it will start for you, but it will at some point. I've had years that I've needed IVs just once a year and the worst being 2007, where I needed IVs 5 times. So far this year, knock, knock, - nada. So you just never know. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I explain the feeling of an exacerbation to my non CF friends and family, as having the worst flu you've ever experienced that simply won't go away.

Good luck, hope you can go awhile longer without them. <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
J

jodijp

New member
Even though I was Dx at 25, I didn't experience my first PICC and IV Abx round until I was 44. Up to that time, the orals seemed to do the job just fine. <img src="i/expressions/face-icon-small-smile.gif" border="0"> But there comes a point, and you will know it, when the orals do don't squat anymore. You can just tell how you feel that you need more.

There is no crystal ball of when it will start for you, but it will at some point. I've had years that I've needed IVs just once a year and the worst being 2007, where I needed IVs 5 times. So far this year, knock, knock, - nada. So you just never know. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I explain the feeling of an exacerbation to my non CF friends and family, as having the worst flu you've ever experienced that simply won't go away.

Good luck, hope you can go awhile longer without them. <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
J

jodijp

New member
Even though I was Dx at 25, I didn't experience my first PICC and IV Abx round until I was 44. Up to that time, the orals seemed to do the job just fine. <img src="i/expressions/face-icon-small-smile.gif" border="0"> But there comes a point, and you will know it, when the orals do don't squat anymore. You can just tell how you feel that you need more.

There is no crystal ball of when it will start for you, but it will at some point. I've had years that I've needed IVs just once a year and the worst being 2007, where I needed IVs 5 times. So far this year, knock, knock, - nada. So you just never know. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I explain the feeling of an exacerbation to my non CF friends and family, as having the worst flu you've ever experienced that simply won't go away.

Good luck, hope you can go awhile longer without them. <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
J

jodijp

New member
Even though I was Dx at 25, I didn't experience my first PICC and IV Abx round until I was 44. Up to that time, the orals seemed to do the job just fine. <img src="i/expressions/face-icon-small-smile.gif" border="0"> But there comes a point, and you will know it, when the orals do don't squat anymore. You can just tell how you feel that you need more.

There is no crystal ball of when it will start for you, but it will at some point. I've had years that I've needed IVs just once a year and the worst being 2007, where I needed IVs 5 times. So far this year, knock, knock, - nada. So you just never know. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I explain the feeling of an exacerbation to my non CF friends and family, as having the worst flu you've ever experienced that simply won't go away.

Good luck, hope you can go awhile longer without them. <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
J

jodijp

New member
Even though I was Dx at 25, I didn't experience my first PICC and IV Abx round until I was 44. Up to that time, the orals seemed to do the job just fine. <img src="i/expressions/face-icon-small-smile.gif" border="0"> But there comes a point, and you will know it, when the orals do don't squat anymore. You can just tell how you feel that you need more.
<br />
<br />There is no crystal ball of when it will start for you, but it will at some point. I've had years that I've needed IVs just once a year and the worst being 2007, where I needed IVs 5 times. So far this year, knock, knock, - nada. So you just never know. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />I explain the feeling of an exacerbation to my non CF friends and family, as having the worst flu you've ever experienced that simply won't go away.
<br />
<br />Good luck, hope you can go awhile longer without them. <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
S

Sevenstars

New member
I think the name "tune up" is kind of a misnomer. That's what they always called them at children's hospital, but I think it was more for our benefit, you know? Rather than telling a kid "you're sick and need to go into the hospital" they'd tell us "well, we're gonna bring you in for a tune up so you can feel better!" Does that make sense?

I don't think I've ever had a preventative tune-up. Basically, just like everyone else said, you know when you need meds. <img src="i/expressions/face-icon-small-smile.gif" border="0"> You'll have your own tell tale signs... for Emily it's coughing that keeps her awake, for me it's when I get too SOB to walk up steps.

Also, just because your PFTs are good, don't stop your treatments!! And be vigilant if they do drop. Like Emily said, if hers drops to 91%... sure that might be awesome for a lot of us, but its not good for HER, so it's time for meds. Know what your numbers typically are, and don't settle for them being less. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

Sevenstars

New member
I think the name "tune up" is kind of a misnomer. That's what they always called them at children's hospital, but I think it was more for our benefit, you know? Rather than telling a kid "you're sick and need to go into the hospital" they'd tell us "well, we're gonna bring you in for a tune up so you can feel better!" Does that make sense?

I don't think I've ever had a preventative tune-up. Basically, just like everyone else said, you know when you need meds. <img src="i/expressions/face-icon-small-smile.gif" border="0"> You'll have your own tell tale signs... for Emily it's coughing that keeps her awake, for me it's when I get too SOB to walk up steps.

Also, just because your PFTs are good, don't stop your treatments!! And be vigilant if they do drop. Like Emily said, if hers drops to 91%... sure that might be awesome for a lot of us, but its not good for HER, so it's time for meds. Know what your numbers typically are, and don't settle for them being less. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

Sevenstars

New member
I think the name "tune up" is kind of a misnomer. That's what they always called them at children's hospital, but I think it was more for our benefit, you know? Rather than telling a kid "you're sick and need to go into the hospital" they'd tell us "well, we're gonna bring you in for a tune up so you can feel better!" Does that make sense?

I don't think I've ever had a preventative tune-up. Basically, just like everyone else said, you know when you need meds. <img src="i/expressions/face-icon-small-smile.gif" border="0"> You'll have your own tell tale signs... for Emily it's coughing that keeps her awake, for me it's when I get too SOB to walk up steps.

Also, just because your PFTs are good, don't stop your treatments!! And be vigilant if they do drop. Like Emily said, if hers drops to 91%... sure that might be awesome for a lot of us, but its not good for HER, so it's time for meds. Know what your numbers typically are, and don't settle for them being less. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

Sevenstars

New member
I think the name "tune up" is kind of a misnomer. That's what they always called them at children's hospital, but I think it was more for our benefit, you know? Rather than telling a kid "you're sick and need to go into the hospital" they'd tell us "well, we're gonna bring you in for a tune up so you can feel better!" Does that make sense?

I don't think I've ever had a preventative tune-up. Basically, just like everyone else said, you know when you need meds. <img src="i/expressions/face-icon-small-smile.gif" border="0"> You'll have your own tell tale signs... for Emily it's coughing that keeps her awake, for me it's when I get too SOB to walk up steps.

Also, just because your PFTs are good, don't stop your treatments!! And be vigilant if they do drop. Like Emily said, if hers drops to 91%... sure that might be awesome for a lot of us, but its not good for HER, so it's time for meds. Know what your numbers typically are, and don't settle for them being less. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

Sevenstars

New member
I think the name "tune up" is kind of a misnomer. That's what they always called them at children's hospital, but I think it was more for our benefit, you know? Rather than telling a kid "you're sick and need to go into the hospital" they'd tell us "well, we're gonna bring you in for a tune up so you can feel better!" Does that make sense?
<br />
<br />I don't think I've ever had a preventative tune-up. Basically, just like everyone else said, you know when you need meds. <img src="i/expressions/face-icon-small-smile.gif" border="0"> You'll have your own tell tale signs... for Emily it's coughing that keeps her awake, for me it's when I get too SOB to walk up steps.
<br />
<br />Also, just because your PFTs are good, don't stop your treatments!! And be vigilant if they do drop. Like Emily said, if hers drops to 91%... sure that might be awesome for a lot of us, but its not good for HER, so it's time for meds. Know what your numbers typically are, and don't settle for them being less. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
 
D

DarbSkull

New member
Hey Juliet, I was also a late dx, and the whole story is in my blog if you are interested. Let me know if you have any questions. <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=23627&catid=2473">Link here</a>
 
D

DarbSkull

New member
Hey Juliet, I was also a late dx, and the whole story is in my blog if you are interested. Let me know if you have any questions. <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=23627&catid=2473">Link here</a>
 
D

DarbSkull

New member
Hey Juliet, I was also a late dx, and the whole story is in my blog if you are interested. Let me know if you have any questions. <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=23627&catid=2473">Link here</a>
 
D

DarbSkull

New member
Hey Juliet, I was also a late dx, and the whole story is in my blog if you are interested. Let me know if you have any questions. <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=23627&catid=2473">Link here</a>
 
D

DarbSkull

New member
Hey Juliet, I was also a late dx, and the whole story is in my blog if you are interested. Let me know if you have any questions. <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=23627&catid=2473">Link here</a>
 
M

Momtana

New member
hi, Juliet. I have had oral antibiotics for lung infections since I was about 11 years old - usually a couple of times a year. One year I was really sick and we did a sputum culture which showed Pseudomonas which led to my first IV antibiotics - treated by our family doctor. He sent me off to a pulmonologist who did a bunch of testing and found my CF diagnosis. Since then I have had IV antibiotics three times - usually when I haven't responded to oral antibiotics. HOWEVER since I now react to Levaquin and Cipro - I now get IV when I need to be treated and pull my lung function up. I am not so grumpy about getting IV now, it really makes a difference for me.
 
M

Momtana

New member
hi, Juliet. I have had oral antibiotics for lung infections since I was about 11 years old - usually a couple of times a year. One year I was really sick and we did a sputum culture which showed Pseudomonas which led to my first IV antibiotics - treated by our family doctor. He sent me off to a pulmonologist who did a bunch of testing and found my CF diagnosis. Since then I have had IV antibiotics three times - usually when I haven't responded to oral antibiotics. HOWEVER since I now react to Levaquin and Cipro - I now get IV when I need to be treated and pull my lung function up. I am not so grumpy about getting IV now, it really makes a difference for me.
 
M

Momtana

New member
hi, Juliet. I have had oral antibiotics for lung infections since I was about 11 years old - usually a couple of times a year. One year I was really sick and we did a sputum culture which showed Pseudomonas which led to my first IV antibiotics - treated by our family doctor. He sent me off to a pulmonologist who did a bunch of testing and found my CF diagnosis. Since then I have had IV antibiotics three times - usually when I haven't responded to oral antibiotics. HOWEVER since I now react to Levaquin and Cipro - I now get IV when I need to be treated and pull my lung function up. I am not so grumpy about getting IV now, it really makes a difference for me.
 
M

Momtana

New member
hi, Juliet. I have had oral antibiotics for lung infections since I was about 11 years old - usually a couple of times a year. One year I was really sick and we did a sputum culture which showed Pseudomonas which led to my first IV antibiotics - treated by our family doctor. He sent me off to a pulmonologist who did a bunch of testing and found my CF diagnosis. Since then I have had IV antibiotics three times - usually when I haven't responded to oral antibiotics. HOWEVER since I now react to Levaquin and Cipro - I now get IV when I need to be treated and pull my lung function up. I am not so grumpy about getting IV now, it really makes a difference for me.
 
M

Momtana

New member
hi, Juliet. I have had oral antibiotics for lung infections since I was about 11 years old - usually a couple of times a year. One year I was really sick and we did a sputum culture which showed Pseudomonas which led to my first IV antibiotics - treated by our family doctor. He sent me off to a pulmonologist who did a bunch of testing and found my CF diagnosis. Since then I have had IV antibiotics three times - usually when I haven't responded to oral antibiotics. HOWEVER since I now react to Levaquin and Cipro - I now get IV when I need to be treated and pull my lung function up. I am not so grumpy about getting IV now, it really makes a difference for me.
 
You must log in or register to reply here.
Top