What next?

G

Gingerloveslife

New member
Hey Laura. I am actually going through the exact same thing. At the beginning of May, I started a four week stint on iv abx after an FEV1 drop of over 16%. After the four weeks my pfts have not budged and I am stuck at FEV1 42% after staying between 56-62% the last four years. They quit those antibiotics but I did keep my picc line in. We plan to start back antibiotics again after some more tests are done on my culture. I too couldn't part with the picc when I still had a low fev1. I also felt better and my sputum changed after the abx but after only two weeks off I am feeling bad again. We did a ct scan yesterday but still no results. I may consider a second opinion in the near future as well even though it does feel like we are cheating on our doctors. We have to worry about ourselves first though. I have no other answers and am actually feeling better after reading others' replies to you. I hope you and me both will be feeling better soon. Best of luck with everything.<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
G

Gingerloveslife

New member
Hey Laura. I am actually going through the exact same thing. At the beginning of May, I started a four week stint on iv abx after an FEV1 drop of over 16%. After the four weeks my pfts have not budged and I am stuck at FEV1 42% after staying between 56-62% the last four years. They quit those antibiotics but I did keep my picc line in. We plan to start back antibiotics again after some more tests are done on my culture. I too couldn't part with the picc when I still had a low fev1. I also felt better and my sputum changed after the abx but after only two weeks off I am feeling bad again. We did a ct scan yesterday but still no results. I may consider a second opinion in the near future as well even though it does feel like we are cheating on our doctors. We have to worry about ourselves first though. I have no other answers and am actually feeling better after reading others' replies to you. I hope you and me both will be feeling better soon. Best of luck with everything.<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
G

Gingerloveslife

New member
Hey Laura. I am actually going through the exact same thing. At the beginning of May, I started a four week stint on iv abx after an FEV1 drop of over 16%. After the four weeks my pfts have not budged and I am stuck at FEV1 42% after staying between 56-62% the last four years. They quit those antibiotics but I did keep my picc line in. We plan to start back antibiotics again after some more tests are done on my culture. I too couldn't part with the picc when I still had a low fev1. I also felt better and my sputum changed after the abx but after only two weeks off I am feeling bad again. We did a ct scan yesterday but still no results. I may consider a second opinion in the near future as well even though it does feel like we are cheating on our doctors. We have to worry about ourselves first though. I have no other answers and am actually feeling better after reading others' replies to you. I hope you and me both will be feeling better soon. Best of luck with everything.<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
G

Gingerloveslife

New member
Hey Laura. I am actually going through the exact same thing. At the beginning of May, I started a four week stint on iv abx after an FEV1 drop of over 16%. After the four weeks my pfts have not budged and I am stuck at FEV1 42% after staying between 56-62% the last four years. They quit those antibiotics but I did keep my picc line in. We plan to start back antibiotics again after some more tests are done on my culture. I too couldn't part with the picc when I still had a low fev1. I also felt better and my sputum changed after the abx but after only two weeks off I am feeling bad again. We did a ct scan yesterday but still no results. I may consider a second opinion in the near future as well even though it does feel like we are cheating on our doctors. We have to worry about ourselves first though. I have no other answers and am actually feeling better after reading others' replies to you. I hope you and me both will be feeling better soon. Best of luck with everything.<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
G

Gingerloveslife

New member
Hey Laura. I am actually going through the exact same thing. At the beginning of May, I started a four week stint on iv abx after an FEV1 drop of over 16%. After the four weeks my pfts have not budged and I am stuck at FEV1 42% after staying between 56-62% the last four years. They quit those antibiotics but I did keep my picc line in. We plan to start back antibiotics again after some more tests are done on my culture. I too couldn't part with the picc when I still had a low fev1. I also felt better and my sputum changed after the abx but after only two weeks off I am feeling bad again. We did a ct scan yesterday but still no results. I may consider a second opinion in the near future as well even though it does feel like we are cheating on our doctors. We have to worry about ourselves first though. I have no other answers and am actually feeling better after reading others' replies to you. I hope you and me both will be feeling better soon. Best of luck with everything.<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
J

joaniemusic

New member
<img src="i/expressions/coughing.gif" border="0">
Ok here's what i think, i too am dealing with the same crap. Although I would recommend to anyone who is listening or reading get a port-a-cath. Saves you time. It's the same as a PICC line but permanent. YOu can see it under your skin but who cares. People have weird stuff all the time.
anyways, I"m now allergic to everything, even with evil prednisone. I will not take that ever again, unless i'm dying. I hate how it makes me feel.
Anyways as for you PFT's well, this how i understand it. Every time we get an infection we do serious damage to our already damaged lungs. So recovering from and infection not only takes time but patience. If you feel great after your bout of antibiotics then take some time to rest. Finish them and chill out and see how you do over about a month. I know it's a long time but honest you need that time to recover. We are NOT normal we need way more time to heal then the average Joe.
Your sputum is your best guide. The color tells you when you are sick or not. I don't get fevers, nothing, i just feel tired and my sputum changes, that's how i know i'm sick, and once I get antibiotics they kick my rear end. BAD
So my advice is TIME give yourself time to heal. If you are still not noticing your PFT's go up well you may done more damage that is irreversable. We are not getting younger and docs don't know everything about adult CF'ers. we are teaching them each and every one of us.
Take care and feel better

Joanne 32 w/CF diagnosed at 13 and still working as an xray tech.
 
J

joaniemusic

New member
<img src="i/expressions/coughing.gif" border="0">
Ok here's what i think, i too am dealing with the same crap. Although I would recommend to anyone who is listening or reading get a port-a-cath. Saves you time. It's the same as a PICC line but permanent. YOu can see it under your skin but who cares. People have weird stuff all the time.
anyways, I"m now allergic to everything, even with evil prednisone. I will not take that ever again, unless i'm dying. I hate how it makes me feel.
Anyways as for you PFT's well, this how i understand it. Every time we get an infection we do serious damage to our already damaged lungs. So recovering from and infection not only takes time but patience. If you feel great after your bout of antibiotics then take some time to rest. Finish them and chill out and see how you do over about a month. I know it's a long time but honest you need that time to recover. We are NOT normal we need way more time to heal then the average Joe.
Your sputum is your best guide. The color tells you when you are sick or not. I don't get fevers, nothing, i just feel tired and my sputum changes, that's how i know i'm sick, and once I get antibiotics they kick my rear end. BAD
So my advice is TIME give yourself time to heal. If you are still not noticing your PFT's go up well you may done more damage that is irreversable. We are not getting younger and docs don't know everything about adult CF'ers. we are teaching them each and every one of us.
Take care and feel better

Joanne 32 w/CF diagnosed at 13 and still working as an xray tech.
 
J

joaniemusic

New member
<img src="i/expressions/coughing.gif" border="0">
Ok here's what i think, i too am dealing with the same crap. Although I would recommend to anyone who is listening or reading get a port-a-cath. Saves you time. It's the same as a PICC line but permanent. YOu can see it under your skin but who cares. People have weird stuff all the time.
anyways, I"m now allergic to everything, even with evil prednisone. I will not take that ever again, unless i'm dying. I hate how it makes me feel.
Anyways as for you PFT's well, this how i understand it. Every time we get an infection we do serious damage to our already damaged lungs. So recovering from and infection not only takes time but patience. If you feel great after your bout of antibiotics then take some time to rest. Finish them and chill out and see how you do over about a month. I know it's a long time but honest you need that time to recover. We are NOT normal we need way more time to heal then the average Joe.
Your sputum is your best guide. The color tells you when you are sick or not. I don't get fevers, nothing, i just feel tired and my sputum changes, that's how i know i'm sick, and once I get antibiotics they kick my rear end. BAD
So my advice is TIME give yourself time to heal. If you are still not noticing your PFT's go up well you may done more damage that is irreversable. We are not getting younger and docs don't know everything about adult CF'ers. we are teaching them each and every one of us.
Take care and feel better

Joanne 32 w/CF diagnosed at 13 and still working as an xray tech.
 
J

joaniemusic

New member
<img src="i/expressions/coughing.gif" border="0">
Ok here's what i think, i too am dealing with the same crap. Although I would recommend to anyone who is listening or reading get a port-a-cath. Saves you time. It's the same as a PICC line but permanent. YOu can see it under your skin but who cares. People have weird stuff all the time.
anyways, I"m now allergic to everything, even with evil prednisone. I will not take that ever again, unless i'm dying. I hate how it makes me feel.
Anyways as for you PFT's well, this how i understand it. Every time we get an infection we do serious damage to our already damaged lungs. So recovering from and infection not only takes time but patience. If you feel great after your bout of antibiotics then take some time to rest. Finish them and chill out and see how you do over about a month. I know it's a long time but honest you need that time to recover. We are NOT normal we need way more time to heal then the average Joe.
Your sputum is your best guide. The color tells you when you are sick or not. I don't get fevers, nothing, i just feel tired and my sputum changes, that's how i know i'm sick, and once I get antibiotics they kick my rear end. BAD
So my advice is TIME give yourself time to heal. If you are still not noticing your PFT's go up well you may done more damage that is irreversable. We are not getting younger and docs don't know everything about adult CF'ers. we are teaching them each and every one of us.
Take care and feel better

Joanne 32 w/CF diagnosed at 13 and still working as an xray tech.
 
J

joaniemusic

New member
<img src="i/expressions/coughing.gif" border="0">
<br />Ok here's what i think, i too am dealing with the same crap. Although I would recommend to anyone who is listening or reading get a port-a-cath. Saves you time. It's the same as a PICC line but permanent. YOu can see it under your skin but who cares. People have weird stuff all the time.
<br />anyways, I"m now allergic to everything, even with evil prednisone. I will not take that ever again, unless i'm dying. I hate how it makes me feel.
<br />Anyways as for you PFT's well, this how i understand it. Every time we get an infection we do serious damage to our already damaged lungs. So recovering from and infection not only takes time but patience. If you feel great after your bout of antibiotics then take some time to rest. Finish them and chill out and see how you do over about a month. I know it's a long time but honest you need that time to recover. We are NOT normal we need way more time to heal then the average Joe.
<br />Your sputum is your best guide. The color tells you when you are sick or not. I don't get fevers, nothing, i just feel tired and my sputum changes, that's how i know i'm sick, and once I get antibiotics they kick my rear end. BAD
<br />So my advice is TIME give yourself time to heal. If you are still not noticing your PFT's go up well you may done more damage that is irreversable. We are not getting younger and docs don't know everything about adult CF'ers. we are teaching them each and every one of us.
<br />Take care and feel better
<br />
<br />Joanne 32 w/CF diagnosed at 13 and still working as an xray tech.
 
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