My PFT's are down... any advice?

T

twistedlibrarian

New member
I'm depressed. I've been coughing really badly lately, and I went to the doctor yesterday. My numbers are down. I feel like I've been doing everything right, three long vest treatments every day, duoneb with each vest treatment, hypertonic saline twice a day, pulmozyme twice a day... And I only was on iv's two months ago. The doc put me on cipro, thinking that would bring my infection under control, since i obviously am not feeling sick enough to be in the hospital.

Last night I coughed so bad I didn't sleep all night, and now my chest hurts from coughing. This damned HUMIDITY!!! (Louisiana=yucky!!)

I wanna beef up the regimin somehow... but anytime something makes me cough, I just can't seem to stop coughing. I try cough drops, codeine, those cough strips that melt on your tongue... nothing seems to calm me down. no clue what more I could do...

If anyone has any ideas for me... any tips are appreciated.. Thanks so much yall. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lauren/23/wcf
 
T

twistedlibrarian

New member
I'm depressed. I've been coughing really badly lately, and I went to the doctor yesterday. My numbers are down. I feel like I've been doing everything right, three long vest treatments every day, duoneb with each vest treatment, hypertonic saline twice a day, pulmozyme twice a day... And I only was on iv's two months ago. The doc put me on cipro, thinking that would bring my infection under control, since i obviously am not feeling sick enough to be in the hospital.

Last night I coughed so bad I didn't sleep all night, and now my chest hurts from coughing. This damned HUMIDITY!!! (Louisiana=yucky!!)

I wanna beef up the regimin somehow... but anytime something makes me cough, I just can't seem to stop coughing. I try cough drops, codeine, those cough strips that melt on your tongue... nothing seems to calm me down. no clue what more I could do...

If anyone has any ideas for me... any tips are appreciated.. Thanks so much yall. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lauren/23/wcf
 
T

twistedlibrarian

New member
I'm depressed. I've been coughing really badly lately, and I went to the doctor yesterday. My numbers are down. I feel like I've been doing everything right, three long vest treatments every day, duoneb with each vest treatment, hypertonic saline twice a day, pulmozyme twice a day... And I only was on iv's two months ago. The doc put me on cipro, thinking that would bring my infection under control, since i obviously am not feeling sick enough to be in the hospital.

Last night I coughed so bad I didn't sleep all night, and now my chest hurts from coughing. This damned HUMIDITY!!! (Louisiana=yucky!!)

I wanna beef up the regimin somehow... but anytime something makes me cough, I just can't seem to stop coughing. I try cough drops, codeine, those cough strips that melt on your tongue... nothing seems to calm me down. no clue what more I could do...

If anyone has any ideas for me... any tips are appreciated.. Thanks so much yall. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lauren/23/wcf
 
N

NoExcuses

New member
Well, if your PFT's are down, it would seem to me that you <i> are </i> sick enough to be in the hospital, especially since your PFT's are down and you were just in the hospital 2 month's ago. That's my initial reaction.

Additionally, how are you doing the Vest? What settings? Are you doing special coughing? How is your actual jacket fitting? All these things can make a difference in the Vest's ability to keep you healthy.

Are you exercising? Have you had your allergies tested (skin test, not blood IgE)? If so, are you practicing environment control for your allergies?

Just a few suggestions... I could go on and on. Good luck!
 
N

NoExcuses

New member
Well, if your PFT's are down, it would seem to me that you <i> are </i> sick enough to be in the hospital, especially since your PFT's are down and you were just in the hospital 2 month's ago. That's my initial reaction.

Additionally, how are you doing the Vest? What settings? Are you doing special coughing? How is your actual jacket fitting? All these things can make a difference in the Vest's ability to keep you healthy.

Are you exercising? Have you had your allergies tested (skin test, not blood IgE)? If so, are you practicing environment control for your allergies?

Just a few suggestions... I could go on and on. Good luck!
 
N

NoExcuses

New member
Well, if your PFT's are down, it would seem to me that you <i> are </i> sick enough to be in the hospital, especially since your PFT's are down and you were just in the hospital 2 month's ago. That's my initial reaction.

Additionally, how are you doing the Vest? What settings? Are you doing special coughing? How is your actual jacket fitting? All these things can make a difference in the Vest's ability to keep you healthy.

Are you exercising? Have you had your allergies tested (skin test, not blood IgE)? If so, are you practicing environment control for your allergies?

Just a few suggestions... I could go on and on. Good luck!
 
S

sarabeth87

New member
I agree with Amy (sakasuka) that you are probably sick enough to go in the hospital. I know what you mean about the humidty. It's not any better in Miss. In fact it's been horrible these past few days and it's been making me feel pretty crappy too.
 
S

sarabeth87

New member
I agree with Amy (sakasuka) that you are probably sick enough to go in the hospital. I know what you mean about the humidty. It's not any better in Miss. In fact it's been horrible these past few days and it's been making me feel pretty crappy too.
 
S

sarabeth87

New member
I agree with Amy (sakasuka) that you are probably sick enough to go in the hospital. I know what you mean about the humidty. It's not any better in Miss. In fact it's been horrible these past few days and it's been making me feel pretty crappy too.
 
T

twistedlibrarian

New member
I dunno, its like if the doc thinks cipro might help, I want to give it a try at least, because I am so sick of the picc lines and scars all over my arms and having to remember all those iv meds by myself. I don't have much help, and I hardly get any time to sleep,I end up missing doses. It's so much easier when someone can just take care of you. I hope that doesn't sound bad... piccs are just a pain all around, and a major source of stress. If I have to have one, I want to at least wait until after Christmas...

My vest fits pretty snugly, I usually do it on the lowest setting, cuz I had pluerisy for a long time, and I've been having the really bad coughing fits, and it seems if I do the vest any higher, it disturbs my lungs to the point where I cough for hours. I mean I know I need to cough, but I've been trying to have some control over it, so I don't hyperventilate. I don't do huff coughs or any of that for the same reason, but I usually sit at the vest for at least an hour, three times a day, while i surf the net.. and usually I bring up a lot of junk.


I don't excersize, I used to, and my gym membership is about to expire. The last few times I went to the gym was really humiliating, cuz I worked myself into a coughing fit and everyone was worried about me. I just wanted to drop dead. I am not much of the outdoors type, unless it's a pretty day, and we just haven't been seeing much of those lately...
*sigh*
 
T

twistedlibrarian

New member
I dunno, its like if the doc thinks cipro might help, I want to give it a try at least, because I am so sick of the picc lines and scars all over my arms and having to remember all those iv meds by myself. I don't have much help, and I hardly get any time to sleep,I end up missing doses. It's so much easier when someone can just take care of you. I hope that doesn't sound bad... piccs are just a pain all around, and a major source of stress. If I have to have one, I want to at least wait until after Christmas...

My vest fits pretty snugly, I usually do it on the lowest setting, cuz I had pluerisy for a long time, and I've been having the really bad coughing fits, and it seems if I do the vest any higher, it disturbs my lungs to the point where I cough for hours. I mean I know I need to cough, but I've been trying to have some control over it, so I don't hyperventilate. I don't do huff coughs or any of that for the same reason, but I usually sit at the vest for at least an hour, three times a day, while i surf the net.. and usually I bring up a lot of junk.


I don't excersize, I used to, and my gym membership is about to expire. The last few times I went to the gym was really humiliating, cuz I worked myself into a coughing fit and everyone was worried about me. I just wanted to drop dead. I am not much of the outdoors type, unless it's a pretty day, and we just haven't been seeing much of those lately...
*sigh*
 
T

twistedlibrarian

New member
I dunno, its like if the doc thinks cipro might help, I want to give it a try at least, because I am so sick of the picc lines and scars all over my arms and having to remember all those iv meds by myself. I don't have much help, and I hardly get any time to sleep,I end up missing doses. It's so much easier when someone can just take care of you. I hope that doesn't sound bad... piccs are just a pain all around, and a major source of stress. If I have to have one, I want to at least wait until after Christmas...

My vest fits pretty snugly, I usually do it on the lowest setting, cuz I had pluerisy for a long time, and I've been having the really bad coughing fits, and it seems if I do the vest any higher, it disturbs my lungs to the point where I cough for hours. I mean I know I need to cough, but I've been trying to have some control over it, so I don't hyperventilate. I don't do huff coughs or any of that for the same reason, but I usually sit at the vest for at least an hour, three times a day, while i surf the net.. and usually I bring up a lot of junk.


I don't excersize, I used to, and my gym membership is about to expire. The last few times I went to the gym was really humiliating, cuz I worked myself into a coughing fit and everyone was worried about me. I just wanted to drop dead. I am not much of the outdoors type, unless it's a pretty day, and we just haven't been seeing much of those lately...
*sigh*
 
N

NoExcuses

New member
well if you're going to avoid picc lines because they're a pain and you don't like scars, etc., then you should get used to PFT's declining. one of the best ways to preserve lung function is antibiotic therapy if you are in fact colonized with PA. if you're not, then there are a whole host of other options. that's the trade off. it's unfortunate, but that's the way CF goes.

unless cipro works miracles for you (and you suseptable PA)..... but i have a feeling if IV's can't keep you clean for 2 months, cipro isn't going help all that much.
 
N

NoExcuses

New member
well if you're going to avoid picc lines because they're a pain and you don't like scars, etc., then you should get used to PFT's declining. one of the best ways to preserve lung function is antibiotic therapy if you are in fact colonized with PA. if you're not, then there are a whole host of other options. that's the trade off. it's unfortunate, but that's the way CF goes.

unless cipro works miracles for you (and you suseptable PA)..... but i have a feeling if IV's can't keep you clean for 2 months, cipro isn't going help all that much.
 
N

NoExcuses

New member
well if you're going to avoid picc lines because they're a pain and you don't like scars, etc., then you should get used to PFT's declining. one of the best ways to preserve lung function is antibiotic therapy if you are in fact colonized with PA. if you're not, then there are a whole host of other options. that's the trade off. it's unfortunate, but that's the way CF goes.

unless cipro works miracles for you (and you suseptable PA)..... but i have a feeling if IV's can't keep you clean for 2 months, cipro isn't going help all that much.
 
T

twistedlibrarian

New member
I just don't want to go through this all again yet, because for me two months is too soon! Its usually at least three or four months apart between the times that I am on iv's ... and the last time they had so much trouble getting the picc line in... I am afraid that they will have to put a port in me. If that's nessecary I will do it, but I'm telling you what the doctor said, He thought that I didn't need to be on iv's.... but after coughing all night, I feel even worse. so, if I feel worse tommorow, I guess I will call them. I haven't used cipro in a long time, so I hope it does something.. I doubt it too though. grrrr
 
T

twistedlibrarian

New member
I just don't want to go through this all again yet, because for me two months is too soon! Its usually at least three or four months apart between the times that I am on iv's ... and the last time they had so much trouble getting the picc line in... I am afraid that they will have to put a port in me. If that's nessecary I will do it, but I'm telling you what the doctor said, He thought that I didn't need to be on iv's.... but after coughing all night, I feel even worse. so, if I feel worse tommorow, I guess I will call them. I haven't used cipro in a long time, so I hope it does something.. I doubt it too though. grrrr
 
T

twistedlibrarian

New member
I just don't want to go through this all again yet, because for me two months is too soon! Its usually at least three or four months apart between the times that I am on iv's ... and the last time they had so much trouble getting the picc line in... I am afraid that they will have to put a port in me. If that's nessecary I will do it, but I'm telling you what the doctor said, He thought that I didn't need to be on iv's.... but after coughing all night, I feel even worse. so, if I feel worse tommorow, I guess I will call them. I haven't used cipro in a long time, so I hope it does something.. I doubt it too though. grrrr
 
K

kybert

New member
you should probably consider getting a port. its no where near as bad as a picc line and can be easily disguised.
 
K

kybert

New member
you should probably consider getting a port. its no where near as bad as a picc line and can be easily disguised.
 
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