Fed Up!!

[saveferris2009]

OK a few points.

-The info about only doing 10 days is interesting. What IV's were you on prior to being on Cipro for 10 days?

-What does your sputum culture say your bacteria are sensitive to?

-It's important to understand if they do analyze sputum cultures (as mentioned in the above point), that sputum cultures aren't 100% accurate. Whatever sputum you're coughin up isn't necessarily representative of the bacteria growing in your lungs. So if abx aren't working, chances are you have bacteria in your lungs that isn't showing up.

-Getting a bronchoscopy is important because clearly these antibiotics didn't help you. The bronchoscopy can examine what bacteria you have in your lungs and help the docs determine with abx are appropriate for you (or maybe identify a fungus that of course won't go away with ANY abx)

Push your doc - it's up to YOU to ensure you get the correct care you need

 

[saveferris2009]

OK a few points.

-The info about only doing 10 days is interesting. What IV's were you on prior to being on Cipro for 10 days?

-What does your sputum culture say your bacteria are sensitive to?

-It's important to understand if they do analyze sputum cultures (as mentioned in the above point), that sputum cultures aren't 100% accurate. Whatever sputum you're coughin up isn't necessarily representative of the bacteria growing in your lungs. So if abx aren't working, chances are you have bacteria in your lungs that isn't showing up.

-Getting a bronchoscopy is important because clearly these antibiotics didn't help you. The bronchoscopy can examine what bacteria you have in your lungs and help the docs determine with abx are appropriate for you (or maybe identify a fungus that of course won't go away with ANY abx)

Push your doc - it's up to YOU to ensure you get the correct care you need

 

[saveferris2009]

OK a few points.

-The info about only doing 10 days is interesting. What IV's were you on prior to being on Cipro for 10 days?

-What does your sputum culture say your bacteria are sensitive to?

-It's important to understand if they do analyze sputum cultures (as mentioned in the above point), that sputum cultures aren't 100% accurate. Whatever sputum you're coughin up isn't necessarily representative of the bacteria growing in your lungs. So if abx aren't working, chances are you have bacteria in your lungs that isn't showing up.

-Getting a bronchoscopy is important because clearly these antibiotics didn't help you. The bronchoscopy can examine what bacteria you have in your lungs and help the docs determine with abx are appropriate for you (or maybe identify a fungus that of course won't go away with ANY abx)

Push your doc - it's up to YOU to ensure you get the correct care you need

 

[saveferris2009]

OK a few points.

-The info about only doing 10 days is interesting. What IV's were you on prior to being on Cipro for 10 days?

-What does your sputum culture say your bacteria are sensitive to?

-It's important to understand if they do analyze sputum cultures (as mentioned in the above point), that sputum cultures aren't 100% accurate. Whatever sputum you're coughin up isn't necessarily representative of the bacteria growing in your lungs. So if abx aren't working, chances are you have bacteria in your lungs that isn't showing up.

-Getting a bronchoscopy is important because clearly these antibiotics didn't help you. The bronchoscopy can examine what bacteria you have in your lungs and help the docs determine with abx are appropriate for you (or maybe identify a fungus that of course won't go away with ANY abx)

Push your doc - it's up to YOU to ensure you get the correct care you need

 

[saveferris2009]

OK a few points.
<br />
<br />-The info about only doing 10 days is interesting. What IV's were you on prior to being on Cipro for 10 days?
<br />
<br />-What does your sputum culture say your bacteria are sensitive to?
<br />
<br />-It's important to understand if they do analyze sputum cultures (as mentioned in the above point), that sputum cultures aren't 100% accurate. Whatever sputum you're coughin up isn't necessarily representative of the bacteria growing in your lungs. So if abx aren't working, chances are you have bacteria in your lungs that isn't showing up.
<br />
<br />-Getting a bronchoscopy is important because clearly these antibiotics didn't help you. The bronchoscopy can examine what bacteria you have in your lungs and help the docs determine with abx are appropriate for you (or maybe identify a fungus that of course won't go away with ANY abx)
<br />
<br />Push your doc - it's up to YOU to ensure you get the correct care you need

 

[Juniper]

I was on Tobramycin and Ceftazidime. I have Pseudamonas and i know i am sensitive to Cipro which is why i was given this one.

I had Iv's back in may and was given the same two then as well.

We don't get to find out as much as you guys seem to from our hospital in the UK. We never get told what the cultures show or why we are given the drugs we are.

I have noticed from reading this site that a lot of you are much more knowledgeable than we are in the UK.

I suppose i need to ask a little more rather than just accepting what they tell us, but often the docs seem a bit intimidating. i know in the past i've bought up things that have been concerning me and i must admit i come away feeling as if i have been a nuisance for asking in the first place as it gets dismissed as one of those things.

I think i can learn a lot from your approach to care.

 

[Juniper]

I was on Tobramycin and Ceftazidime. I have Pseudamonas and i know i am sensitive to Cipro which is why i was given this one.

I had Iv's back in may and was given the same two then as well.

We don't get to find out as much as you guys seem to from our hospital in the UK. We never get told what the cultures show or why we are given the drugs we are.

I have noticed from reading this site that a lot of you are much more knowledgeable than we are in the UK.

I suppose i need to ask a little more rather than just accepting what they tell us, but often the docs seem a bit intimidating. i know in the past i've bought up things that have been concerning me and i must admit i come away feeling as if i have been a nuisance for asking in the first place as it gets dismissed as one of those things.

I think i can learn a lot from your approach to care.

 

[Juniper]

I was on Tobramycin and Ceftazidime. I have Pseudamonas and i know i am sensitive to Cipro which is why i was given this one.

I had Iv's back in may and was given the same two then as well.

We don't get to find out as much as you guys seem to from our hospital in the UK. We never get told what the cultures show or why we are given the drugs we are.

I have noticed from reading this site that a lot of you are much more knowledgeable than we are in the UK.

I suppose i need to ask a little more rather than just accepting what they tell us, but often the docs seem a bit intimidating. i know in the past i've bought up things that have been concerning me and i must admit i come away feeling as if i have been a nuisance for asking in the first place as it gets dismissed as one of those things.

I think i can learn a lot from your approach to care.

 

[Juniper]

I was on Tobramycin and Ceftazidime. I have Pseudamonas and i know i am sensitive to Cipro which is why i was given this one.

I had Iv's back in may and was given the same two then as well.

We don't get to find out as much as you guys seem to from our hospital in the UK. We never get told what the cultures show or why we are given the drugs we are.

I have noticed from reading this site that a lot of you are much more knowledgeable than we are in the UK.

I suppose i need to ask a little more rather than just accepting what they tell us, but often the docs seem a bit intimidating. i know in the past i've bought up things that have been concerning me and i must admit i come away feeling as if i have been a nuisance for asking in the first place as it gets dismissed as one of those things.

I think i can learn a lot from your approach to care.

 

[Juniper]

I was on Tobramycin and Ceftazidime. I have Pseudamonas and i know i am sensitive to Cipro which is why i was given this one.
<br />
<br />I had Iv's back in may and was given the same two then as well.
<br />
<br />We don't get to find out as much as you guys seem to from our hospital in the UK. We never get told what the cultures show or why we are given the drugs we are.
<br />
<br />I have noticed from reading this site that a lot of you are much more knowledgeable than we are in the UK.
<br />
<br />I suppose i need to ask a little more rather than just accepting what they tell us, but often the docs seem a bit intimidating. i know in the past i've bought up things that have been concerning me and i must admit i come away feeling as if i have been a nuisance for asking in the first place as it gets dismissed as one of those things.
<br />
<br />I think i can learn a lot from your approach to care.

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Juniper</b></i>



I suppose i need to ask a little more rather than just accepting what they tell us, but often the docs seem a bit intimidating.
</end quote></div>


I know it can be tough.

But at the end of the day, you are the only one who suffers the consequences of not speaking up.

These doctors go home to their families at the end of the day, go on their vacations, and move on with their lives.

You spend day and night with these lungs that aren't in tip top shape - 100% of your life.

Therefore you have the right and obligation to advocate for yourself, for your lungs, because you have to live with them 24/7. Your docs don't so naturally they don't have the incentive you do to question and advocate for your care.


<div class="FTQUOTE"><begin quote>
i know in the past i've bought up things that have been concerning me and i must admit i come away feeling as if i have been a nuisance for asking in the first place as it gets dismissed as one of those things.
</end quote></div>


At the end of your life, like all of us, you don't want to wonder what if you would have been persistent with a complaint and if getting the proper care would have extended your life or improve its quality.

Try telling your doc that CF patients in the US are getting better care than you are (by better I mean more involvement and say in their treatment, able to ask more questions, etc). I know the US is made fun of for lower quality of care, but maybe this will stir up your doc's competitive juices and/or make him think about making you feel bad for getting involved in your care.

<div class="FTQUOTE"><begin quote>


I think i can learn a lot from your approach to care.</end quote></div>


I hope so. You deserve the best quality care possible.

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Juniper</b></i>



I suppose i need to ask a little more rather than just accepting what they tell us, but often the docs seem a bit intimidating.
</end quote></div>


I know it can be tough.

But at the end of the day, you are the only one who suffers the consequences of not speaking up.

These doctors go home to their families at the end of the day, go on their vacations, and move on with their lives.

You spend day and night with these lungs that aren't in tip top shape - 100% of your life.

Therefore you have the right and obligation to advocate for yourself, for your lungs, because you have to live with them 24/7. Your docs don't so naturally they don't have the incentive you do to question and advocate for your care.


<div class="FTQUOTE"><begin quote>
i know in the past i've bought up things that have been concerning me and i must admit i come away feeling as if i have been a nuisance for asking in the first place as it gets dismissed as one of those things.
</end quote></div>


At the end of your life, like all of us, you don't want to wonder what if you would have been persistent with a complaint and if getting the proper care would have extended your life or improve its quality.

Try telling your doc that CF patients in the US are getting better care than you are (by better I mean more involvement and say in their treatment, able to ask more questions, etc). I know the US is made fun of for lower quality of care, but maybe this will stir up your doc's competitive juices and/or make him think about making you feel bad for getting involved in your care.

<div class="FTQUOTE"><begin quote>


I think i can learn a lot from your approach to care.</end quote></div>


I hope so. You deserve the best quality care possible.

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Juniper</b></i>



I suppose i need to ask a little more rather than just accepting what they tell us, but often the docs seem a bit intimidating.
</end quote></div>


I know it can be tough.

But at the end of the day, you are the only one who suffers the consequences of not speaking up.

These doctors go home to their families at the end of the day, go on their vacations, and move on with their lives.

You spend day and night with these lungs that aren't in tip top shape - 100% of your life.

Therefore you have the right and obligation to advocate for yourself, for your lungs, because you have to live with them 24/7. Your docs don't so naturally they don't have the incentive you do to question and advocate for your care.


<div class="FTQUOTE"><begin quote>
i know in the past i've bought up things that have been concerning me and i must admit i come away feeling as if i have been a nuisance for asking in the first place as it gets dismissed as one of those things.
</end quote></div>


At the end of your life, like all of us, you don't want to wonder what if you would have been persistent with a complaint and if getting the proper care would have extended your life or improve its quality.

Try telling your doc that CF patients in the US are getting better care than you are (by better I mean more involvement and say in their treatment, able to ask more questions, etc). I know the US is made fun of for lower quality of care, but maybe this will stir up your doc's competitive juices and/or make him think about making you feel bad for getting involved in your care.

<div class="FTQUOTE"><begin quote>


I think i can learn a lot from your approach to care.</end quote></div>


I hope so. You deserve the best quality care possible.

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Juniper</b></i>



I suppose i need to ask a little more rather than just accepting what they tell us, but often the docs seem a bit intimidating.
</end quote>


I know it can be tough.

But at the end of the day, you are the only one who suffers the consequences of not speaking up.

These doctors go home to their families at the end of the day, go on their vacations, and move on with their lives.

You spend day and night with these lungs that aren't in tip top shape - 100% of your life.

Therefore you have the right and obligation to advocate for yourself, for your lungs, because you have to live with them 24/7. Your docs don't so naturally they don't have the incentive you do to question and advocate for your care.


<div class="FTQUOTE"><begin quote>
i know in the past i've bought up things that have been concerning me and i must admit i come away feeling as if i have been a nuisance for asking in the first place as it gets dismissed as one of those things.
</end quote>


At the end of your life, like all of us, you don't want to wonder what if you would have been persistent with a complaint and if getting the proper care would have extended your life or improve its quality.

Try telling your doc that CF patients in the US are getting better care than you are (by better I mean more involvement and say in their treatment, able to ask more questions, etc). I know the US is made fun of for lower quality of care, but maybe this will stir up your doc's competitive juices and/or make him think about making you feel bad for getting involved in your care.

<div class="FTQUOTE"><begin quote>


I think i can learn a lot from your approach to care.</end quote>


I hope so. You deserve the best quality care possible.

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Juniper</b></i>
<br />
<br />
<br />
<br />I suppose i need to ask a little more rather than just accepting what they tell us, but often the docs seem a bit intimidating.
<br /></end quote>
<br />
<br />
<br />I know it can be tough.
<br />
<br />But at the end of the day, you are the only one who suffers the consequences of not speaking up.
<br />
<br />These doctors go home to their families at the end of the day, go on their vacations, and move on with their lives.
<br />
<br />You spend day and night with these lungs that aren't in tip top shape - 100% of your life.
<br />
<br />Therefore you have the right and obligation to advocate for yourself, for your lungs, because you have to live with them 24/7. Your docs don't so naturally they don't have the incentive you do to question and advocate for your care.
<br />
<br />
<br /><div class="FTQUOTE"><begin quote>
<br />i know in the past i've bought up things that have been concerning me and i must admit i come away feeling as if i have been a nuisance for asking in the first place as it gets dismissed as one of those things.
<br /></end quote>
<br />
<br />
<br />At the end of your life, like all of us, you don't want to wonder what if you would have been persistent with a complaint and if getting the proper care would have extended your life or improve its quality.
<br />
<br />Try telling your doc that CF patients in the US are getting better care than you are (by better I mean more involvement and say in their treatment, able to ask more questions, etc). I know the US is made fun of for lower quality of care, but maybe this will stir up your doc's competitive juices and/or make him think about making you feel bad for getting involved in your care.
<br />
<br /><div class="FTQUOTE"><begin quote>
<br />
<br />
<br />I think i can learn a lot from your approach to care.</end quote>
<br />
<br />
<br />I hope so. You deserve the best quality care possible.

 

[Lex]

I often go with the flow, accepting what the docs say.

Lucky for me, my wife isn't like me. She gets downright confrontational with the docs. And the result? I feel embarassed and the docs listen to her.

I may feel uncomfortable, but she gets the job done. If you can't speak up to the docs, bring along a family member who doesn't mind being aggressive.

It will save your life.

 

[Lex]

I often go with the flow, accepting what the docs say.

Lucky for me, my wife isn't like me. She gets downright confrontational with the docs. And the result? I feel embarassed and the docs listen to her.

I may feel uncomfortable, but she gets the job done. If you can't speak up to the docs, bring along a family member who doesn't mind being aggressive.

It will save your life.

 

[Lex]

I often go with the flow, accepting what the docs say.

Lucky for me, my wife isn't like me. She gets downright confrontational with the docs. And the result? I feel embarassed and the docs listen to her.

I may feel uncomfortable, but she gets the job done. If you can't speak up to the docs, bring along a family member who doesn't mind being aggressive.

It will save your life.

 

[Lex]

I often go with the flow, accepting what the docs say.

Lucky for me, my wife isn't like me. She gets downright confrontational with the docs. And the result? I feel embarassed and the docs listen to her.

I may feel uncomfortable, but she gets the job done. If you can't speak up to the docs, bring along a family member who doesn't mind being aggressive.

It will save your life.

 

[Lex]

I often go with the flow, accepting what the docs say.
<br />
<br />Lucky for me, my wife isn't like me. She gets downright confrontational with the docs. And the result? I feel embarassed and the docs listen to her.
<br />
<br />I may feel uncomfortable, but she gets the job done. If you can't speak up to the docs, bring along a family member who doesn't mind being aggressive.
<br />
<br />It will save your life.