unhappy with CF team

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beccab

New member
I think that as long as oral are working it is probally best to stay with them as long as you can but when you have been sick as much as i have been sick.. it seems that orals are not working and they need to move on to something else....

I actually coughed up crap yesterday (and got it out) and took it to the clinic so we will see if it grows anything....
 
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beccab

New member
I think that as long as oral are working it is probally best to stay with them as long as you can but when you have been sick as much as i have been sick.. it seems that orals are not working and they need to move on to something else....

I actually coughed up crap yesterday (and got it out) and took it to the clinic so we will see if it grows anything....
 
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beccab

New member
I think that as long as oral are working it is probally best to stay with them as long as you can but when you have been sick as much as i have been sick.. it seems that orals are not working and they need to move on to something else....

I actually coughed up crap yesterday (and got it out) and took it to the clinic so we will see if it grows anything....
 
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beccab

New member
I think that as long as oral are working it is probally best to stay with them as long as you can but when you have been sick as much as i have been sick.. it seems that orals are not working and they need to move on to something else....

I actually coughed up crap yesterday (and got it out) and took it to the clinic so we will see if it grows anything....
 
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beccab

New member
I think that as long as oral are working it is probally best to stay with them as long as you can but when you have been sick as much as i have been sick.. it seems that orals are not working and they need to move on to something else....
<br />
<br />I actually coughed up crap yesterday (and got it out) and took it to the clinic so we will see if it grows anything....
 
S

Skye

New member
becca....I am sorry you are dealing with this and I hope you find some resolution. People wonder how we get such tough skins and become such fighters.....you have to be a fighter and take the time and get your questions answered and get those second opinions.

so how did you transport your goo....LOL! did you have a sterile cup handy at home so you didn't miss that golden opportunity. I can just picture you excitedly handing over your specimen in a brown paper bag<img src="i/expressions/face-icon-small-smile.gif" border="0"> "here you go team...you asked for it, you got it, now do something for me<img src="i/expressions/face-icon-small-smile.gif" border="0">"
 
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Skye

New member
becca....I am sorry you are dealing with this and I hope you find some resolution. People wonder how we get such tough skins and become such fighters.....you have to be a fighter and take the time and get your questions answered and get those second opinions.

so how did you transport your goo....LOL! did you have a sterile cup handy at home so you didn't miss that golden opportunity. I can just picture you excitedly handing over your specimen in a brown paper bag<img src="i/expressions/face-icon-small-smile.gif" border="0"> "here you go team...you asked for it, you got it, now do something for me<img src="i/expressions/face-icon-small-smile.gif" border="0">"
 
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Skye

New member
becca....I am sorry you are dealing with this and I hope you find some resolution. People wonder how we get such tough skins and become such fighters.....you have to be a fighter and take the time and get your questions answered and get those second opinions.

so how did you transport your goo....LOL! did you have a sterile cup handy at home so you didn't miss that golden opportunity. I can just picture you excitedly handing over your specimen in a brown paper bag<img src="i/expressions/face-icon-small-smile.gif" border="0"> "here you go team...you asked for it, you got it, now do something for me<img src="i/expressions/face-icon-small-smile.gif" border="0">"
 
S

Skye

New member
becca....I am sorry you are dealing with this and I hope you find some resolution. People wonder how we get such tough skins and become such fighters.....you have to be a fighter and take the time and get your questions answered and get those second opinions.

so how did you transport your goo....LOL! did you have a sterile cup handy at home so you didn't miss that golden opportunity. I can just picture you excitedly handing over your specimen in a brown paper bag<img src="i/expressions/face-icon-small-smile.gif" border="0"> "here you go team...you asked for it, you got it, now do something for me<img src="i/expressions/face-icon-small-smile.gif" border="0">"
 
S

Skye

New member
becca....I am sorry you are dealing with this and I hope you find some resolution. People wonder how we get such tough skins and become such fighters.....you have to be a fighter and take the time and get your questions answered and get those second opinions.
<br />
<br />so how did you transport your goo....LOL! did you have a sterile cup handy at home so you didn't miss that golden opportunity. I can just picture you excitedly handing over your specimen in a brown paper bag<img src="i/expressions/face-icon-small-smile.gif" border="0"> "here you go team...you asked for it, you got it, now do something for me<img src="i/expressions/face-icon-small-smile.gif" border="0">"
<br />
<br />
 
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beccab

New member
i actually had a cup at home ...i could have given them a sample at clinic (i thought...i was coughing and it was close) the nurse was going to have the RT do CPT but the docs didn't want him to.....
so when I got it in the morning I called and left a message ....ya this is becca I got a sputum sample do you want it! ...I got a call in about 15 min LOL
 
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beccab

New member
i actually had a cup at home ...i could have given them a sample at clinic (i thought...i was coughing and it was close) the nurse was going to have the RT do CPT but the docs didn't want him to.....
so when I got it in the morning I called and left a message ....ya this is becca I got a sputum sample do you want it! ...I got a call in about 15 min LOL
 
B

beccab

New member
i actually had a cup at home ...i could have given them a sample at clinic (i thought...i was coughing and it was close) the nurse was going to have the RT do CPT but the docs didn't want him to.....
so when I got it in the morning I called and left a message ....ya this is becca I got a sputum sample do you want it! ...I got a call in about 15 min LOL
 
B

beccab

New member
i actually had a cup at home ...i could have given them a sample at clinic (i thought...i was coughing and it was close) the nurse was going to have the RT do CPT but the docs didn't want him to.....
so when I got it in the morning I called and left a message ....ya this is becca I got a sputum sample do you want it! ...I got a call in about 15 min LOL
 
B

beccab

New member
i actually had a cup at home ...i could have given them a sample at clinic (i thought...i was coughing and it was close) the nurse was going to have the RT do CPT but the docs didn't want him to.....
<br />so when I got it in the morning I called and left a message ....ya this is becca I got a sputum sample do you want it! ...I got a call in about 15 min LOL
 
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point

New member
I know some people aren't fond of TOBI via neb, but have you asked your doc's about that instead of the IV's. Also, I think the first step would be to check your bact flora sensitivities. Maybe you have something that your oral Abx isn't geared toward. I am also a high PFT'er and I had a drop last year that my dr's were ontop of immediately. We did a round of inhaled TOBI and I was back up to my normal (106%) and have been there for the past 4 months.

If your dr continues to treat you as a comparison w/ other CFers I personally would find another dr. A lot of CF prevention is reducing the time of inflammation and sickness to keep our lungs as free of fibrosis (scarring) as possible.

GL and Continue to Fight/Advocate for yourself! <img src="i/expressions/hugging.gif" border="0">
 
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point

New member
I know some people aren't fond of TOBI via neb, but have you asked your doc's about that instead of the IV's. Also, I think the first step would be to check your bact flora sensitivities. Maybe you have something that your oral Abx isn't geared toward. I am also a high PFT'er and I had a drop last year that my dr's were ontop of immediately. We did a round of inhaled TOBI and I was back up to my normal (106%) and have been there for the past 4 months.

If your dr continues to treat you as a comparison w/ other CFers I personally would find another dr. A lot of CF prevention is reducing the time of inflammation and sickness to keep our lungs as free of fibrosis (scarring) as possible.

GL and Continue to Fight/Advocate for yourself! <img src="i/expressions/hugging.gif" border="0">
 
P

point

New member
I know some people aren't fond of TOBI via neb, but have you asked your doc's about that instead of the IV's. Also, I think the first step would be to check your bact flora sensitivities. Maybe you have something that your oral Abx isn't geared toward. I am also a high PFT'er and I had a drop last year that my dr's were ontop of immediately. We did a round of inhaled TOBI and I was back up to my normal (106%) and have been there for the past 4 months.

If your dr continues to treat you as a comparison w/ other CFers I personally would find another dr. A lot of CF prevention is reducing the time of inflammation and sickness to keep our lungs as free of fibrosis (scarring) as possible.

GL and Continue to Fight/Advocate for yourself! <img src="i/expressions/hugging.gif" border="0">
 
P

point

New member
I know some people aren't fond of TOBI via neb, but have you asked your doc's about that instead of the IV's. Also, I think the first step would be to check your bact flora sensitivities. Maybe you have something that your oral Abx isn't geared toward. I am also a high PFT'er and I had a drop last year that my dr's were ontop of immediately. We did a round of inhaled TOBI and I was back up to my normal (106%) and have been there for the past 4 months.

If your dr continues to treat you as a comparison w/ other CFers I personally would find another dr. A lot of CF prevention is reducing the time of inflammation and sickness to keep our lungs as free of fibrosis (scarring) as possible.

GL and Continue to Fight/Advocate for yourself! <img src="i/expressions/hugging.gif" border="0">
 
P

point

New member
I know some people aren't fond of TOBI via neb, but have you asked your doc's about that instead of the IV's. Also, I think the first step would be to check your bact flora sensitivities. Maybe you have something that your oral Abx isn't geared toward. I am also a high PFT'er and I had a drop last year that my dr's were ontop of immediately. We did a round of inhaled TOBI and I was back up to my normal (106%) and have been there for the past 4 months.
<br />
<br />If your dr continues to treat you as a comparison w/ other CFers I personally would find another dr. A lot of CF prevention is reducing the time of inflammation and sickness to keep our lungs as free of fibrosis (scarring) as possible.
<br />
<br />GL and Continue to Fight/Advocate for yourself! <img src="i/expressions/hugging.gif" border="0">
 
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