On IV's but PFT's falling

K

Kelli

New member
Hi Everyone,

I've been on home IV's for 2 weeks. I have not missed a single dose, I have been doing my vest, etc.
So my beginning PFT (fev1) was 40, after week 1 of IV's it went to 48, after week 2 of IV's it's down to 45.
So after working my butt off to get myself better, I have nothing to show for it.

The kicker is.... if I'm not feeling better by Thurs. I have to be in-patient for 2 weeks on Collistin. Which I DON'T want to do because that will be 5 straight weeks on IV's for me. (And I really don't want to be IN the hospital, last time I had a HUGE cepecia scare, which I do NOT want to repeat!)

Anyone been thru this? Any advice? I'm doing everything by the book. The ONE thing I can think of, at work a guy who was sick decided to visit my office to complain of how ill he was. I pulled my turtleneck over my mouth/nose and told him to leave, NOW! I know a bunch of people are sick right now, colds & flus have been going around work like crazy!

I'd appreciate anything that could help me stay out of the hospital!

Thanks everyone!
Kelli
30 f CF
 
K

Kelli

New member
Hi Everyone,

I've been on home IV's for 2 weeks. I have not missed a single dose, I have been doing my vest, etc.
So my beginning PFT (fev1) was 40, after week 1 of IV's it went to 48, after week 2 of IV's it's down to 45.
So after working my butt off to get myself better, I have nothing to show for it.

The kicker is.... if I'm not feeling better by Thurs. I have to be in-patient for 2 weeks on Collistin. Which I DON'T want to do because that will be 5 straight weeks on IV's for me. (And I really don't want to be IN the hospital, last time I had a HUGE cepecia scare, which I do NOT want to repeat!)

Anyone been thru this? Any advice? I'm doing everything by the book. The ONE thing I can think of, at work a guy who was sick decided to visit my office to complain of how ill he was. I pulled my turtleneck over my mouth/nose and told him to leave, NOW! I know a bunch of people are sick right now, colds & flus have been going around work like crazy!

I'd appreciate anything that could help me stay out of the hospital!

Thanks everyone!
Kelli
30 f CF
 
K

Kelli

New member
Hi Everyone,

I've been on home IV's for 2 weeks. I have not missed a single dose, I have been doing my vest, etc.
So my beginning PFT (fev1) was 40, after week 1 of IV's it went to 48, after week 2 of IV's it's down to 45.
So after working my butt off to get myself better, I have nothing to show for it.

The kicker is.... if I'm not feeling better by Thurs. I have to be in-patient for 2 weeks on Collistin. Which I DON'T want to do because that will be 5 straight weeks on IV's for me. (And I really don't want to be IN the hospital, last time I had a HUGE cepecia scare, which I do NOT want to repeat!)

Anyone been thru this? Any advice? I'm doing everything by the book. The ONE thing I can think of, at work a guy who was sick decided to visit my office to complain of how ill he was. I pulled my turtleneck over my mouth/nose and told him to leave, NOW! I know a bunch of people are sick right now, colds & flus have been going around work like crazy!

I'd appreciate anything that could help me stay out of the hospital!

Thanks everyone!
Kelli
30 f CF
 
K

Kelli

New member
Hi Everyone,

I've been on home IV's for 2 weeks. I have not missed a single dose, I have been doing my vest, etc.
So my beginning PFT (fev1) was 40, after week 1 of IV's it went to 48, after week 2 of IV's it's down to 45.
So after working my butt off to get myself better, I have nothing to show for it.

The kicker is.... if I'm not feeling better by Thurs. I have to be in-patient for 2 weeks on Collistin. Which I DON'T want to do because that will be 5 straight weeks on IV's for me. (And I really don't want to be IN the hospital, last time I had a HUGE cepecia scare, which I do NOT want to repeat!)

Anyone been thru this? Any advice? I'm doing everything by the book. The ONE thing I can think of, at work a guy who was sick decided to visit my office to complain of how ill he was. I pulled my turtleneck over my mouth/nose and told him to leave, NOW! I know a bunch of people are sick right now, colds & flus have been going around work like crazy!

I'd appreciate anything that could help me stay out of the hospital!

Thanks everyone!
Kelli
30 f CF
 
K

Kelli

New member
Hi Everyone,

I've been on home IV's for 2 weeks. I have not missed a single dose, I have been doing my vest, etc.
So my beginning PFT (fev1) was 40, after week 1 of IV's it went to 48, after week 2 of IV's it's down to 45.
So after working my butt off to get myself better, I have nothing to show for it.

The kicker is.... if I'm not feeling better by Thurs. I have to be in-patient for 2 weeks on Collistin. Which I DON'T want to do because that will be 5 straight weeks on IV's for me. (And I really don't want to be IN the hospital, last time I had a HUGE cepecia scare, which I do NOT want to repeat!)

Anyone been thru this? Any advice? I'm doing everything by the book. The ONE thing I can think of, at work a guy who was sick decided to visit my office to complain of how ill he was. I pulled my turtleneck over my mouth/nose and told him to leave, NOW! I know a bunch of people are sick right now, colds & flus have been going around work like crazy!

I'd appreciate anything that could help me stay out of the hospital!

Thanks everyone!
Kelli
30 f CF
 
N

NoExcuses

New member
sometimes inflammation can cause PFT's to go down instead of infection.

and if you're up all hours of the night doing IV's, the vest, etc, your body isn't getting a chance to heal. rest is such a huge part of getting better.

also, if your bacteria aren't particularly suseptable to the antibiotics you're on, the bacteria won't be killed and you'll still have an active infection. aside from getting a bronch (much more accurate than a sputum culture) to determine what bacteria are hanging out in your lungs, have you had your white blood cell count monitored? my doc always takes pre-IV WBC levels and then WBC about 7 and then 14 days after IV's are started. The #s should drop significantly if the antibiotics are working...
 
N

NoExcuses

New member
sometimes inflammation can cause PFT's to go down instead of infection.

and if you're up all hours of the night doing IV's, the vest, etc, your body isn't getting a chance to heal. rest is such a huge part of getting better.

also, if your bacteria aren't particularly suseptable to the antibiotics you're on, the bacteria won't be killed and you'll still have an active infection. aside from getting a bronch (much more accurate than a sputum culture) to determine what bacteria are hanging out in your lungs, have you had your white blood cell count monitored? my doc always takes pre-IV WBC levels and then WBC about 7 and then 14 days after IV's are started. The #s should drop significantly if the antibiotics are working...
 
N

NoExcuses

New member
sometimes inflammation can cause PFT's to go down instead of infection.

and if you're up all hours of the night doing IV's, the vest, etc, your body isn't getting a chance to heal. rest is such a huge part of getting better.

also, if your bacteria aren't particularly suseptable to the antibiotics you're on, the bacteria won't be killed and you'll still have an active infection. aside from getting a bronch (much more accurate than a sputum culture) to determine what bacteria are hanging out in your lungs, have you had your white blood cell count monitored? my doc always takes pre-IV WBC levels and then WBC about 7 and then 14 days after IV's are started. The #s should drop significantly if the antibiotics are working...
 
N

NoExcuses

New member
sometimes inflammation can cause PFT's to go down instead of infection.

and if you're up all hours of the night doing IV's, the vest, etc, your body isn't getting a chance to heal. rest is such a huge part of getting better.

also, if your bacteria aren't particularly suseptable to the antibiotics you're on, the bacteria won't be killed and you'll still have an active infection. aside from getting a bronch (much more accurate than a sputum culture) to determine what bacteria are hanging out in your lungs, have you had your white blood cell count monitored? my doc always takes pre-IV WBC levels and then WBC about 7 and then 14 days after IV's are started. The #s should drop significantly if the antibiotics are working...
 
N

NoExcuses

New member
sometimes inflammation can cause PFT's to go down instead of infection.

and if you're up all hours of the night doing IV's, the vest, etc, your body isn't getting a chance to heal. rest is such a huge part of getting better.

also, if your bacteria aren't particularly suseptable to the antibiotics you're on, the bacteria won't be killed and you'll still have an active infection. aside from getting a bronch (much more accurate than a sputum culture) to determine what bacteria are hanging out in your lungs, have you had your white blood cell count monitored? my doc always takes pre-IV WBC levels and then WBC about 7 and then 14 days after IV's are started. The #s should drop significantly if the antibiotics are working...
 
W

Wheezie

New member
The only thing I can think of is that if you're working while doing the home IVs, you might not be getting enough rest and recoup time. Sometimes it's better for me to stay home from work when I'm doing IVs, just so I can keep from running myself down when I'm already compromised and trying to get better. Also, I know 45 is down from 48, but it's still up from 40 so at least that's something. Is it possible you were just having an off day when you did your most recent PFTs? Good luck, Kelli; hope you get the answers you're looking for <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

Wheezie

New member
The only thing I can think of is that if you're working while doing the home IVs, you might not be getting enough rest and recoup time. Sometimes it's better for me to stay home from work when I'm doing IVs, just so I can keep from running myself down when I'm already compromised and trying to get better. Also, I know 45 is down from 48, but it's still up from 40 so at least that's something. Is it possible you were just having an off day when you did your most recent PFTs? Good luck, Kelli; hope you get the answers you're looking for <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

Wheezie

New member
The only thing I can think of is that if you're working while doing the home IVs, you might not be getting enough rest and recoup time. Sometimes it's better for me to stay home from work when I'm doing IVs, just so I can keep from running myself down when I'm already compromised and trying to get better. Also, I know 45 is down from 48, but it's still up from 40 so at least that's something. Is it possible you were just having an off day when you did your most recent PFTs? Good luck, Kelli; hope you get the answers you're looking for <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

Wheezie

New member
The only thing I can think of is that if you're working while doing the home IVs, you might not be getting enough rest and recoup time. Sometimes it's better for me to stay home from work when I'm doing IVs, just so I can keep from running myself down when I'm already compromised and trying to get better. Also, I know 45 is down from 48, but it's still up from 40 so at least that's something. Is it possible you were just having an off day when you did your most recent PFTs? Good luck, Kelli; hope you get the answers you're looking for <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

Wheezie

New member
The only thing I can think of is that if you're working while doing the home IVs, you might not be getting enough rest and recoup time. Sometimes it's better for me to stay home from work when I'm doing IVs, just so I can keep from running myself down when I'm already compromised and trying to get better. Also, I know 45 is down from 48, but it's still up from 40 so at least that's something. Is it possible you were just having an off day when you did your most recent PFTs? Good luck, Kelli; hope you get the answers you're looking for <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

my65roses4me

New member
well on a positive note you have gained 5 points on your FEV1, so it hasn't all been for nothing.
The only thing I can think of is that the IV meds that they have you are on not right for your bugs. Do you think that is possible? Maybe have them do another sputum sample to see what meds you are sensitive to.
Maybe your bugs have changed in mid cycle of Iv's. But a sputum sample will show that.
Sometimes it takes me awhile to show a diff in my FEV1 after I do IV's. As long as I feel better I dont pay attention to my FEV1 for a couple of weeks after I finish IV's. The meds alone make me feel crappy and soemtimes I dont think I have gotten any better but as soon as the meds are out of my body I start to feel better.
I hope I have helped. Good luck and hope you feel better soon.

Try not to get to hung up on numbers and try to concentrate on how you feel instead. Sometimes the numbers and how I feel dont match.
Hang in there!!!
 
M

my65roses4me

New member
well on a positive note you have gained 5 points on your FEV1, so it hasn't all been for nothing.
The only thing I can think of is that the IV meds that they have you are on not right for your bugs. Do you think that is possible? Maybe have them do another sputum sample to see what meds you are sensitive to.
Maybe your bugs have changed in mid cycle of Iv's. But a sputum sample will show that.
Sometimes it takes me awhile to show a diff in my FEV1 after I do IV's. As long as I feel better I dont pay attention to my FEV1 for a couple of weeks after I finish IV's. The meds alone make me feel crappy and soemtimes I dont think I have gotten any better but as soon as the meds are out of my body I start to feel better.
I hope I have helped. Good luck and hope you feel better soon.

Try not to get to hung up on numbers and try to concentrate on how you feel instead. Sometimes the numbers and how I feel dont match.
Hang in there!!!
 
M

my65roses4me

New member
well on a positive note you have gained 5 points on your FEV1, so it hasn't all been for nothing.
The only thing I can think of is that the IV meds that they have you are on not right for your bugs. Do you think that is possible? Maybe have them do another sputum sample to see what meds you are sensitive to.
Maybe your bugs have changed in mid cycle of Iv's. But a sputum sample will show that.
Sometimes it takes me awhile to show a diff in my FEV1 after I do IV's. As long as I feel better I dont pay attention to my FEV1 for a couple of weeks after I finish IV's. The meds alone make me feel crappy and soemtimes I dont think I have gotten any better but as soon as the meds are out of my body I start to feel better.
I hope I have helped. Good luck and hope you feel better soon.

Try not to get to hung up on numbers and try to concentrate on how you feel instead. Sometimes the numbers and how I feel dont match.
Hang in there!!!
 
M

my65roses4me

New member
well on a positive note you have gained 5 points on your FEV1, so it hasn't all been for nothing.
The only thing I can think of is that the IV meds that they have you are on not right for your bugs. Do you think that is possible? Maybe have them do another sputum sample to see what meds you are sensitive to.
Maybe your bugs have changed in mid cycle of Iv's. But a sputum sample will show that.
Sometimes it takes me awhile to show a diff in my FEV1 after I do IV's. As long as I feel better I dont pay attention to my FEV1 for a couple of weeks after I finish IV's. The meds alone make me feel crappy and soemtimes I dont think I have gotten any better but as soon as the meds are out of my body I start to feel better.
I hope I have helped. Good luck and hope you feel better soon.

Try not to get to hung up on numbers and try to concentrate on how you feel instead. Sometimes the numbers and how I feel dont match.
Hang in there!!!
 
M

my65roses4me

New member
well on a positive note you have gained 5 points on your FEV1, so it hasn't all been for nothing.
The only thing I can think of is that the IV meds that they have you are on not right for your bugs. Do you think that is possible? Maybe have them do another sputum sample to see what meds you are sensitive to.
Maybe your bugs have changed in mid cycle of Iv's. But a sputum sample will show that.
Sometimes it takes me awhile to show a diff in my FEV1 after I do IV's. As long as I feel better I dont pay attention to my FEV1 for a couple of weeks after I finish IV's. The meds alone make me feel crappy and soemtimes I dont think I have gotten any better but as soon as the meds are out of my body I start to feel better.
I hope I have helped. Good luck and hope you feel better soon.

Try not to get to hung up on numbers and try to concentrate on how you feel instead. Sometimes the numbers and how I feel dont match.
Hang in there!!!
 
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