Ever wonder.....?

[jodijp]

Hi KrazyKat, <img src="i/expressions/face-icon-small-smile.gif" border="0">

I <i>was</i> in your shoes until I reached 44 and my first IV round. You and I are just a milder case of CF than most of the folks here. But just know, that time has a way of creeping up on you, it's just a matter of <i>when</i> CF will 'officially arrive' for you requiring more meds and treatments.

CF affects everyone differently, some worse than others and in it's own time. I don't share all the symptoms everyone else does either, but what Jessi is experiencing is real and not from over medicating. To suggest otherwise is minimizing her pain and struggles.

And yes, you summed it up nicely, you are one incredibly lucky lady so far!
Hope lady luck stays with you. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[jodijp]

Hi KrazyKat, <img src="i/expressions/face-icon-small-smile.gif" border="0">

I <i>was</i> in your shoes until I reached 44 and my first IV round. You and I are just a milder case of CF than most of the folks here. But just know, that time has a way of creeping up on you, it's just a matter of <i>when</i> CF will 'officially arrive' for you requiring more meds and treatments.

CF affects everyone differently, some worse than others and in it's own time. I don't share all the symptoms everyone else does either, but what Jessi is experiencing is real and not from over medicating. To suggest otherwise is minimizing her pain and struggles.

And yes, you summed it up nicely, you are one incredibly lucky lady so far!
Hope lady luck stays with you. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[jodijp]

Hi KrazyKat, <img src="i/expressions/face-icon-small-smile.gif" border="0">

I <i>was</i> in your shoes until I reached 44 and my first IV round. You and I are just a milder case of CF than most of the folks here. But just know, that time has a way of creeping up on you, it's just a matter of <i>when</i> CF will 'officially arrive' for you requiring more meds and treatments.

CF affects everyone differently, some worse than others and in it's own time. I don't share all the symptoms everyone else does either, but what Jessi is experiencing is real and not from over medicating. To suggest otherwise is minimizing her pain and struggles.

And yes, you summed it up nicely, you are one incredibly lucky lady so far!
Hope lady luck stays with you. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[jodijp]

Hi KrazyKat, <img src="i/expressions/face-icon-small-smile.gif" border="0">

I <i>was</i> in your shoes until I reached 44 and my first IV round. You and I are just a milder case of CF than most of the folks here. But just know, that time has a way of creeping up on you, it's just a matter of <i>when</i> CF will 'officially arrive' for you requiring more meds and treatments.

CF affects everyone differently, some worse than others and in it's own time. I don't share all the symptoms everyone else does either, but what Jessi is experiencing is real and not from over medicating. To suggest otherwise is minimizing her pain and struggles.

And yes, you summed it up nicely, you are one incredibly lucky lady so far!
Hope lady luck stays with you. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[jodijp]

Hi KrazyKat, <img src="i/expressions/face-icon-small-smile.gif" border="0">

I <i>was</i> in your shoes until I reached 44 and my first IV round. You and I are just a milder case of CF than most of the folks here. But just know, that time has a way of creeping up on you, it's just a matter of <i>when</i> CF will 'officially arrive' for you requiring more meds and treatments.

CF affects everyone differently, some worse than others and in it's own time. I don't share all the symptoms everyone else does either, but what Jessi is experiencing is real and not from over medicating. To suggest otherwise is minimizing her pain and struggles.

And yes, you summed it up nicely, you are one incredibly lucky lady so far!
Hope lady luck stays with you. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[KrazyKat]

Sorry, i didn't mean to minimalise the poster's pain at all, as i said it must be absolute hell to live like that.

But i often look at the list of meds some CFers in the US are on and think, wow, what must some of those chemicals be doing to the body?
I realise that each drug goes through rigorous testing before being released on the market, however, no drug can ever be tested for 'long term effects' before being released for public consumption.

I have wondered so many times why i don't get body aches, sore joints, cough up blood, night sweats etc - am i just lucky? Will i get them all eventually? Or are they actually side effects from long term use of some CF meds?
And therefore, do I really want to continue on the road i'm currently on, where i am starting to take more and more classic CF meds - when really, i'm not sure i need them yet, if at all.

Just thinking out loud i guess and looking for others opinions on this. Please don't think i'm being arrogant or trying to show anybody up - I am genuinely puzzled by all of this.

 

[KrazyKat]

Sorry, i didn't mean to minimalise the poster's pain at all, as i said it must be absolute hell to live like that.

But i often look at the list of meds some CFers in the US are on and think, wow, what must some of those chemicals be doing to the body?
I realise that each drug goes through rigorous testing before being released on the market, however, no drug can ever be tested for 'long term effects' before being released for public consumption.

I have wondered so many times why i don't get body aches, sore joints, cough up blood, night sweats etc - am i just lucky? Will i get them all eventually? Or are they actually side effects from long term use of some CF meds?
And therefore, do I really want to continue on the road i'm currently on, where i am starting to take more and more classic CF meds - when really, i'm not sure i need them yet, if at all.

Just thinking out loud i guess and looking for others opinions on this. Please don't think i'm being arrogant or trying to show anybody up - I am genuinely puzzled by all of this.

 

[KrazyKat]

Sorry, i didn't mean to minimalise the poster's pain at all, as i said it must be absolute hell to live like that.

But i often look at the list of meds some CFers in the US are on and think, wow, what must some of those chemicals be doing to the body?
I realise that each drug goes through rigorous testing before being released on the market, however, no drug can ever be tested for 'long term effects' before being released for public consumption.

I have wondered so many times why i don't get body aches, sore joints, cough up blood, night sweats etc - am i just lucky? Will i get them all eventually? Or are they actually side effects from long term use of some CF meds?
And therefore, do I really want to continue on the road i'm currently on, where i am starting to take more and more classic CF meds - when really, i'm not sure i need them yet, if at all.

Just thinking out loud i guess and looking for others opinions on this. Please don't think i'm being arrogant or trying to show anybody up - I am genuinely puzzled by all of this.

 

[KrazyKat]

Sorry, i didn't mean to minimalise the poster's pain at all, as i said it must be absolute hell to live like that.

But i often look at the list of meds some CFers in the US are on and think, wow, what must some of those chemicals be doing to the body?
I realise that each drug goes through rigorous testing before being released on the market, however, no drug can ever be tested for 'long term effects' before being released for public consumption.

I have wondered so many times why i don't get body aches, sore joints, cough up blood, night sweats etc - am i just lucky? Will i get them all eventually? Or are they actually side effects from long term use of some CF meds?
And therefore, do I really want to continue on the road i'm currently on, where i am starting to take more and more classic CF meds - when really, i'm not sure i need them yet, if at all.

Just thinking out loud i guess and looking for others opinions on this. Please don't think i'm being arrogant or trying to show anybody up - I am genuinely puzzled by all of this.

 

[KrazyKat]

Sorry, i didn't mean to minimalise the poster's pain at all, as i said it must be absolute hell to live like that.

But i often look at the list of meds some CFers in the US are on and think, wow, what must some of those chemicals be doing to the body?
I realise that each drug goes through rigorous testing before being released on the market, however, no drug can ever be tested for 'long term effects' before being released for public consumption.

I have wondered so many times why i don't get body aches, sore joints, cough up blood, night sweats etc - am i just lucky? Will i get them all eventually? Or are they actually side effects from long term use of some CF meds?
And therefore, do I really want to continue on the road i'm currently on, where i am starting to take more and more classic CF meds - when really, i'm not sure i need them yet, if at all.

Just thinking out loud i guess and looking for others opinions on this. Please don't think i'm being arrogant or trying to show anybody up - I am genuinely puzzled by all of this.

 

[sue35]

I take steroids and am well aware of the long term side effects. It's not that I am over medicating, I just don't have a choice. If I go off the prednisone my IGE level gets too high and I get sick. So I wouldn't say the majority of us are over medicating, just trying to do the most we can to get by<img src="i/expressions/face-icon-small-smile.gif" border="0"> But who knows, maybe I am wrong...

 

[sue35]

I take steroids and am well aware of the long term side effects. It's not that I am over medicating, I just don't have a choice. If I go off the prednisone my IGE level gets too high and I get sick. So I wouldn't say the majority of us are over medicating, just trying to do the most we can to get by<img src="i/expressions/face-icon-small-smile.gif" border="0"> But who knows, maybe I am wrong...

 

[sue35]

I take steroids and am well aware of the long term side effects. It's not that I am over medicating, I just don't have a choice. If I go off the prednisone my IGE level gets too high and I get sick. So I wouldn't say the majority of us are over medicating, just trying to do the most we can to get by<img src="i/expressions/face-icon-small-smile.gif" border="0"> But who knows, maybe I am wrong...

 

[sue35]

I take steroids and am well aware of the long term side effects. It's not that I am over medicating, I just don't have a choice. If I go off the prednisone my IGE level gets too high and I get sick. So I wouldn't say the majority of us are over medicating, just trying to do the most we can to get by<img src="i/expressions/face-icon-small-smile.gif" border="0"> But who knows, maybe I am wrong...

 

[sue35]

I take steroids and am well aware of the long term side effects. It's not that I am over medicating, I just don't have a choice. If I go off the prednisone my IGE level gets too high and I get sick. So I wouldn't say the majority of us are over medicating, just trying to do the most we can to get by<img src="i/expressions/face-icon-small-smile.gif" border="0"> But who knows, maybe I am wrong...

 

[KrazyKat]

GRRR, sorry, i forgot to add the most important part of my story and the main source of my confusion - duh!!

I am NOT a mild case - my lung function is only 45% on a good day, has been as low as 36%.

The doctors are as confused as I am. When i had my first round of IVs they thought i was some sort of 'miracle' case because i APPEARED to be so unaffected - then they tested my lung function and mucus - suddenly their smiles turned to frowns.

I'm no miracle - 36% lung function with mucoid pseudomonas AND cepacia!!

I hope now you can see where i'm coming from. My lungs are scarred to all hell and i have some very nasty bugs - BUT - i still suffer from virtually no real ill health apart from the odd (quite mild) chest infection.

It just doesnt make any sense to me and i hate unsolved puzzles!!! What am i doing/not doing that is making me such a strange case?

Hence my curiosity about long term use of CF meds.

 

[KrazyKat]

GRRR, sorry, i forgot to add the most important part of my story and the main source of my confusion - duh!!

I am NOT a mild case - my lung function is only 45% on a good day, has been as low as 36%.

The doctors are as confused as I am. When i had my first round of IVs they thought i was some sort of 'miracle' case because i APPEARED to be so unaffected - then they tested my lung function and mucus - suddenly their smiles turned to frowns.

I'm no miracle - 36% lung function with mucoid pseudomonas AND cepacia!!

I hope now you can see where i'm coming from. My lungs are scarred to all hell and i have some very nasty bugs - BUT - i still suffer from virtually no real ill health apart from the odd (quite mild) chest infection.

It just doesnt make any sense to me and i hate unsolved puzzles!!! What am i doing/not doing that is making me such a strange case?

Hence my curiosity about long term use of CF meds.

 

[KrazyKat]

GRRR, sorry, i forgot to add the most important part of my story and the main source of my confusion - duh!!

I am NOT a mild case - my lung function is only 45% on a good day, has been as low as 36%.

The doctors are as confused as I am. When i had my first round of IVs they thought i was some sort of 'miracle' case because i APPEARED to be so unaffected - then they tested my lung function and mucus - suddenly their smiles turned to frowns.

I'm no miracle - 36% lung function with mucoid pseudomonas AND cepacia!!

I hope now you can see where i'm coming from. My lungs are scarred to all hell and i have some very nasty bugs - BUT - i still suffer from virtually no real ill health apart from the odd (quite mild) chest infection.

It just doesnt make any sense to me and i hate unsolved puzzles!!! What am i doing/not doing that is making me such a strange case?

Hence my curiosity about long term use of CF meds.

 

[KrazyKat]

GRRR, sorry, i forgot to add the most important part of my story and the main source of my confusion - duh!!

I am NOT a mild case - my lung function is only 45% on a good day, has been as low as 36%.

The doctors are as confused as I am. When i had my first round of IVs they thought i was some sort of 'miracle' case because i APPEARED to be so unaffected - then they tested my lung function and mucus - suddenly their smiles turned to frowns.

I'm no miracle - 36% lung function with mucoid pseudomonas AND cepacia!!

I hope now you can see where i'm coming from. My lungs are scarred to all hell and i have some very nasty bugs - BUT - i still suffer from virtually no real ill health apart from the odd (quite mild) chest infection.

It just doesnt make any sense to me and i hate unsolved puzzles!!! What am i doing/not doing that is making me such a strange case?

Hence my curiosity about long term use of CF meds.

 

[KrazyKat]

GRRR, sorry, i forgot to add the most important part of my story and the main source of my confusion - duh!!

I am NOT a mild case - my lung function is only 45% on a good day, has been as low as 36%.

The doctors are as confused as I am. When i had my first round of IVs they thought i was some sort of 'miracle' case because i APPEARED to be so unaffected - then they tested my lung function and mucus - suddenly their smiles turned to frowns.

I'm no miracle - 36% lung function with mucoid pseudomonas AND cepacia!!

I hope now you can see where i'm coming from. My lungs are scarred to all hell and i have some very nasty bugs - BUT - i still suffer from virtually no real ill health apart from the odd (quite mild) chest infection.

It just doesnt make any sense to me and i hate unsolved puzzles!!! What am i doing/not doing that is making me such a strange case?

Hence my curiosity about long term use of CF meds.