x

[Ratatosk]

not doing CPTs

We do treatments 3 times a day -- 4 if ds is coming down with something. He's almost 3 1/2 and he's only missed a treatment once and that's when we were catching a flight back from mexico and I'd hoped to get the middle one in during our layover in Denver, but we got delayed in customs. Our local clinic doesn't suggest treatments until the lungs are affected whereas our clinic in the city stresses 2 minimum -- otherwise 3-4 times a day. When we went to the local clinic -- most of the patients had nasty junky sounding coughs. Clinic in the city -- I rarely hear anyone cough except for a couple of the adult ones.

We want to keep ds as healthy as possibly and we feel cpt is very very important to keeping his lungs healthy. Keeping them clear of mucus and infection.

 

[NoExcuses]

not doing CPTs

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

Hi Amy,

his a like to the site for the Cochran report, also do a search
just using cystic fibrosis and it's interesting to see the things
they say, basically the COchran report looks at all the research
done on a specific area of research and summarizers it.  What
the CPT report said is that it DOES help short term, but no long
term benefit has been found.  and since my son does not have
the mucus in his lung I feel it is a waste of time, I could beat on
his chest or he could use the vest for 3 hrs and he would not cough
anything up.  I'm not saying I will never do it, it's just not
needed at this time, and I believe the only reason it is pushed on
us because it is the protocol the doctors use in order to continue
receiving CF funding.  I am trying to do what is best for my
son, I know my son better than any doctor that sees every 4 times a
year.  The reasoning that u should do it now do that it
becomes a part of him, does not hold weight w/ me.  I'm sure
the majority of CF patients rebelled from treatment in their
teenage years and older adults that develop diseases later in life
such as diabetes or High cholesterol have to start to treatment.
  I don't think the reason we are not doing CPT is
because I am denial, at least I hope not, but I struggle with how I
am going to handle him when he's in his 20s and can't  play
football or run, hopefully that won't happen.



thanks,

here's the link:

<a target=_blank class=ftalternatingbarlinklarge href="http://
]http://www.mrw.interscience.wi...CD001401/frame.html</end quote></div>http://
"></div>
"><a target=_blank class=ftalternatingbarlinklarge href="http://www.mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD001401/frame.html</end quot">http://www.m...CD001401/frame.html[/q</a></a></end quote></div>


so you are saying that once you find that he has sputum (all people on this planet have mucus....) then you'll do CPT?

this question is not to be a smart ass...but do you not believe in preventative medicine? if you wait until your son has sputum, then that means you are reacting to an event that has already occured. this is the opposite of preventative.

and if you're worried about your son being in his 20s and not being able to play football or run, i would think that you would approach CF care in a preventative fashion.

help me understand what your thoughts are on preventative medicine.

 

[NoExcuses]

not doing CPTs

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

Hi Amy,

his a like to the site for the Cochran report, also do a search
just using cystic fibrosis and it's interesting to see the things
they say, basically the COchran report looks at all the research
done on a specific area of research and summarizers it.  What
the CPT report said is that it DOES help short term, but no long
term benefit has been found.  and since my son does not have
the mucus in his lung I feel it is a waste of time, I could beat on
his chest or he could use the vest for 3 hrs and he would not cough
anything up.  I'm not saying I will never do it, it's just not
needed at this time, and I believe the only reason it is pushed on
us because it is the protocol the doctors use in order to continue
receiving CF funding.  I am trying to do what is best for my
son, I know my son better than any doctor that sees every 4 times a
year.  The reasoning that u should do it now do that it
becomes a part of him, does not hold weight w/ me.  I'm sure
the majority of CF patients rebelled from treatment in their
teenage years and older adults that develop diseases later in life
such as diabetes or High cholesterol have to start to treatment.
  I don't think the reason we are not doing CPT is
because I am denial, at least I hope not, but I struggle with how I
am going to handle him when he's in his 20s and can't  play
football or run, hopefully that won't happen.



thanks,

here's the link:

<a target=_blank class=ftalternatingbarlinklarge href="http://
]http://www.mrw.interscience.wi...CD001401/frame.html</end quote></div>http://
"></div>
"><a target=_blank class=ftalternatingbarlinklarge href="http://www.mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD001401/frame.html</end quot">http://www.m...CD001401/frame.html[/q</a></a></end quote></div>


so you are saying that once you find that he has sputum (all people on this planet have mucus....) then you'll do CPT?

this question is not to be a smart ass...but do you not believe in preventative medicine? if you wait until your son has sputum, then that means you are reacting to an event that has already occured. this is the opposite of preventative.

and if you're worried about your son being in his 20s and not being able to play football or run, i would think that you would approach CF care in a preventative fashion.

help me understand what your thoughts are on preventative medicine.

 

[NoExcuses]

not doing CPTs

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

Hi Amy,

his a like to the site for the Cochran report, also do a search
just using cystic fibrosis and it's interesting to see the things
they say, basically the COchran report looks at all the research
done on a specific area of research and summarizers it.  What
the CPT report said is that it DOES help short term, but no long
term benefit has been found.  and since my son does not have
the mucus in his lung I feel it is a waste of time, I could beat on
his chest or he could use the vest for 3 hrs and he would not cough
anything up.  I'm not saying I will never do it, it's just not
needed at this time, and I believe the only reason it is pushed on
us because it is the protocol the doctors use in order to continue
receiving CF funding.  I am trying to do what is best for my
son, I know my son better than any doctor that sees every 4 times a
year.  The reasoning that u should do it now do that it
becomes a part of him, does not hold weight w/ me.  I'm sure
the majority of CF patients rebelled from treatment in their
teenage years and older adults that develop diseases later in life
such as diabetes or High cholesterol have to start to treatment.
  I don't think the reason we are not doing CPT is
because I am denial, at least I hope not, but I struggle with how I
am going to handle him when he's in his 20s and can't  play
football or run, hopefully that won't happen.



thanks,

here's the link:

<a target=_blank class=ftalternatingbarlinklarge href="http://
]http://www.mrw.interscience.wi...CD001401/frame.html</end quote></div>http://
"></div>
"><a target=_blank class=ftalternatingbarlinklarge href="http://www.mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD001401/frame.html</end quot">http://www.m...CD001401/frame.html[/q</a></a></end quote></div>


so you are saying that once you find that he has sputum (all people on this planet have mucus....) then you'll do CPT?

this question is not to be a smart ass...but do you not believe in preventative medicine? if you wait until your son has sputum, then that means you are reacting to an event that has already occured. this is the opposite of preventative.

and if you're worried about your son being in his 20s and not being able to play football or run, i would think that you would approach CF care in a preventative fashion.

help me understand what your thoughts are on preventative medicine.

 

[NoExcuses]

not doing CPTs

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

I believe the only reason it is pushed on
us because it is the protocol the doctors use in order to continue
receiving CF funding.  </end quote></div>

CF clinics dno't receive funding based on the frequency of CPT.

They receive funding based on # of patients that go to the clinic, compliance with basic protocols (do you seperate patients with b. cepacia from the normal population and how), etc.

Funding is not based on compliance with CPT.

Call the CFF if you want to put your mind at ease with regards to your clinic's motivations. You might be surprised to hear that your kid's doc is simply trying to keep your son healthy <img src="i/expressions/face-icon-small-shocked.gif" border="0">

 

[NoExcuses]

not doing CPTs

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

I believe the only reason it is pushed on
us because it is the protocol the doctors use in order to continue
receiving CF funding.  </end quote></div>

CF clinics dno't receive funding based on the frequency of CPT.

They receive funding based on # of patients that go to the clinic, compliance with basic protocols (do you seperate patients with b. cepacia from the normal population and how), etc.

Funding is not based on compliance with CPT.

Call the CFF if you want to put your mind at ease with regards to your clinic's motivations. You might be surprised to hear that your kid's doc is simply trying to keep your son healthy <img src="i/expressions/face-icon-small-shocked.gif" border="0">

 

[NoExcuses]

not doing CPTs

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

I believe the only reason it is pushed on
us because it is the protocol the doctors use in order to continue
receiving CF funding.  </end quote></div>

CF clinics dno't receive funding based on the frequency of CPT.

They receive funding based on # of patients that go to the clinic, compliance with basic protocols (do you seperate patients with b. cepacia from the normal population and how), etc.

Funding is not based on compliance with CPT.

Call the CFF if you want to put your mind at ease with regards to your clinic's motivations. You might be surprised to hear that your kid's doc is simply trying to keep your son healthy <img src="i/expressions/face-icon-small-shocked.gif" border="0">

 

[Anns]

x

 

[Anns]

x

 

[Anns]

x

 

[rcq925]

not doing CPTs

To the original poster, I am glad that your son is doing so well! I personally think the opposite of you, that the CPT/Vest is preventative and should be done early to get them into a routine and also to keep the mucous moving. Even if CFers are not coughing up the mucous, the CPT does help keep the mucous moving and thus helps prevent infections as well.

Some CFers are lucky, like your son, and for whatever reason (mutation, environment, sheer luck) do well in their early years or have "mild CF" as some would call it. But not every child or CFer fits that description. I just hope that others who are currently doing CPT and vest because they don't think it is necessary. My daughter Hayley is 2½ and she does three vest treatments per day, each for 30 minutes. We have only had her vest 1 year and it already has over 500 hours on it. We do this religiously because it may make the difference down the road. Personally for me, I would hate to have to look at myself in the mirror years down the road when she might not be doing so well and wonder if I had done the CPT/vest regularly if she would not be so sick. I think prevention is the key to this disease and this is the main reason why the median age of survival for CF keeps going up and up!

I have also read many posts on this board from adults who did not do their treatments regularly as small children or whose parents did not push the treatments as priority, and now they are not doing so well because of it, I just don't want that to happen to my daughter.

I respect everyone does things differently but I know in my house CPT/vest is a priority each and everyday. And also lying to the doctor is not good for any reason! Your doctor cannot get an accurate picture of what is going on with your child or what works for your child if you aren't honest about what treatments you are doing at home.

 

[rcq925]

not doing CPTs

To the original poster, I am glad that your son is doing so well! I personally think the opposite of you, that the CPT/Vest is preventative and should be done early to get them into a routine and also to keep the mucous moving. Even if CFers are not coughing up the mucous, the CPT does help keep the mucous moving and thus helps prevent infections as well.

Some CFers are lucky, like your son, and for whatever reason (mutation, environment, sheer luck) do well in their early years or have "mild CF" as some would call it. But not every child or CFer fits that description. I just hope that others who are currently doing CPT and vest because they don't think it is necessary. My daughter Hayley is 2½ and she does three vest treatments per day, each for 30 minutes. We have only had her vest 1 year and it already has over 500 hours on it. We do this religiously because it may make the difference down the road. Personally for me, I would hate to have to look at myself in the mirror years down the road when she might not be doing so well and wonder if I had done the CPT/vest regularly if she would not be so sick. I think prevention is the key to this disease and this is the main reason why the median age of survival for CF keeps going up and up!

I have also read many posts on this board from adults who did not do their treatments regularly as small children or whose parents did not push the treatments as priority, and now they are not doing so well because of it, I just don't want that to happen to my daughter.

I respect everyone does things differently but I know in my house CPT/vest is a priority each and everyday. And also lying to the doctor is not good for any reason! Your doctor cannot get an accurate picture of what is going on with your child or what works for your child if you aren't honest about what treatments you are doing at home.

 

[rcq925]

not doing CPTs

To the original poster, I am glad that your son is doing so well! I personally think the opposite of you, that the CPT/Vest is preventative and should be done early to get them into a routine and also to keep the mucous moving. Even if CFers are not coughing up the mucous, the CPT does help keep the mucous moving and thus helps prevent infections as well.

Some CFers are lucky, like your son, and for whatever reason (mutation, environment, sheer luck) do well in their early years or have "mild CF" as some would call it. But not every child or CFer fits that description. I just hope that others who are currently doing CPT and vest because they don't think it is necessary. My daughter Hayley is 2½ and she does three vest treatments per day, each for 30 minutes. We have only had her vest 1 year and it already has over 500 hours on it. We do this religiously because it may make the difference down the road. Personally for me, I would hate to have to look at myself in the mirror years down the road when she might not be doing so well and wonder if I had done the CPT/vest regularly if she would not be so sick. I think prevention is the key to this disease and this is the main reason why the median age of survival for CF keeps going up and up!

I have also read many posts on this board from adults who did not do their treatments regularly as small children or whose parents did not push the treatments as priority, and now they are not doing so well because of it, I just don't want that to happen to my daughter.

I respect everyone does things differently but I know in my house CPT/vest is a priority each and everyday. And also lying to the doctor is not good for any reason! Your doctor cannot get an accurate picture of what is going on with your child or what works for your child if you aren't honest about what treatments you are doing at home.

 

[NoExcuses]

not doing CPTs

Becky, you sound like my mother. At 25 years old, I have normal lung function with an FEV1 of 95%. In my childhood, I had very very little symptoms of CF. But my mother religiously used preventative therapies with me. I ask my doc frequency today why I am so healthy? What should I make sure to continue to do? Every time, he tells me to go home and hug my parents.

Infection and sputum never had a chance in my young lungs...beacuse my parents did preventative therapy like CPT every day and every night.

If exercise was simply enough to keep the lungs clear, kids would ahve been living to their 40s like they are today back in the 60s, 70s, and 80s. Because they played and exercised just like they do today.

So why do kids live longer today than every before? preventative medicine. not reacting to when a problem arises. preventing the problem before it even has a chance.

Bottomline, Hayley is extremely fortunate to have you, Becky. As a person who has been in this game for 25 years, I have a more macro perspective on this issues and what I see is Hayley having an excellent chance to living to old age because of what you are doing for her today!

 

[NoExcuses]

not doing CPTs

Becky, you sound like my mother. At 25 years old, I have normal lung function with an FEV1 of 95%. In my childhood, I had very very little symptoms of CF. But my mother religiously used preventative therapies with me. I ask my doc frequency today why I am so healthy? What should I make sure to continue to do? Every time, he tells me to go home and hug my parents.

Infection and sputum never had a chance in my young lungs...beacuse my parents did preventative therapy like CPT every day and every night.

If exercise was simply enough to keep the lungs clear, kids would ahve been living to their 40s like they are today back in the 60s, 70s, and 80s. Because they played and exercised just like they do today.

So why do kids live longer today than every before? preventative medicine. not reacting to when a problem arises. preventing the problem before it even has a chance.

Bottomline, Hayley is extremely fortunate to have you, Becky. As a person who has been in this game for 25 years, I have a more macro perspective on this issues and what I see is Hayley having an excellent chance to living to old age because of what you are doing for her today!

 

[NoExcuses]

not doing CPTs

Becky, you sound like my mother. At 25 years old, I have normal lung function with an FEV1 of 95%. In my childhood, I had very very little symptoms of CF. But my mother religiously used preventative therapies with me. I ask my doc frequency today why I am so healthy? What should I make sure to continue to do? Every time, he tells me to go home and hug my parents.

Infection and sputum never had a chance in my young lungs...beacuse my parents did preventative therapy like CPT every day and every night.

If exercise was simply enough to keep the lungs clear, kids would ahve been living to their 40s like they are today back in the 60s, 70s, and 80s. Because they played and exercised just like they do today.

So why do kids live longer today than every before? preventative medicine. not reacting to when a problem arises. preventing the problem before it even has a chance.

Bottomline, Hayley is extremely fortunate to have you, Becky. As a person who has been in this game for 25 years, I have a more macro perspective on this issues and what I see is Hayley having an excellent chance to living to old age because of what you are doing for her today!

 

[littledebbie]

not doing CPTs

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

Becky, you sound like my mother. At 25 years old, I have normal lung function with an FEV1 of 95%. In my childhood, I had very very little symptoms of CF. But my mother religiously used preventative therapies with me. I ask my doc frequency today why I am so healthy? What should I make sure to continue to do? Every time, he tells me to go home and hug my parents.



Infection and sputum never had a chance in my young lungs...beacuse my parents did preventative therapy like CPT every day and every night.



If exercise was simply enough to keep the lungs clear, kids would ahve been living to their 40s like they are today back in the 60s, 70s, and 80s. Because they played and exercised just like they do today.



So why do kids live longer today than every before? preventative medicine. not reacting to when a problem arises. preventing the problem before it even has a chance.



Bottomline, Hayley is extremely fortunate to have you, Becky. As a person who has been in this game for 25 years, I have a more macro perspective on this issues and what I see is Hayley having an excellent chance to living to old age because of what you are doing for her today!</end quote></div>


Blah blah blah...bite me. Prevenative care.....bite me. You can do prevenative care until the cows come home and some are still going to get terribly sick. And yes maybe the prevenative care is helping maybe not. I am not saying we should throw it all out but I do think we are going overboard with it. And making it out to sound like "prevenative care" is the golden key to everlasting life is bologna. And I think it's crazy to just across the board say "everyone with CF should do this" we are all sooo different. And why why why would they do CPT on this kid who is so healthy right now? There will be a time when he probably has to start but if it's not right now...yeah for him. If he can have a few years free of that particular charming aspect of this disease....whoopee I say. You go boy. Go run run like the wind while you can. Be as normal as possible for as long as possible.

And the go home and hug your parents part. Hey my parents didn't miss a beat and my health sucks should I go give them a beat down? I mean it should go both ways right? The logic eludes me.

I have a problem with people with good PFT's wanting to take so much credit for them and then act like their good health makes them some kind of guru who knows what their talking about. Since my PFT's are crap does this mean I can't talk about taking care of ourselves. I mean obviously everything I did and my parents did must have been wrong? It couldn't just possibly be that CF is a sucky disease and it bites us all in the butt sooner or later at various ages in a multitude of ways?

I think this argument is a lot like the nature vs nurture thing and the answer probably lies somewhere in the middle.

Original poster I commend you for thinking on your own. Looking out for your kids best interest. Seeing your son as an individual and not just doing whatever the Dr.'s say like their a God. Dr.'s are Dr.'s they're going to prescribe and recommend etc. just like a surgeon is usually going to want to operate. It's up to you to sift through all of it and try to make the best choices and teach your kid how to do the same.

Amy: "Infection and sputum never had a chance in my young lungs...beacuse my parents did preventative therapy like CPT every day and every night."
Do you realize how arrogant that sounds? And how possibly insulting that could be to others?

 

[littledebbie]

not doing CPTs

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

Becky, you sound like my mother. At 25 years old, I have normal lung function with an FEV1 of 95%. In my childhood, I had very very little symptoms of CF. But my mother religiously used preventative therapies with me. I ask my doc frequency today why I am so healthy? What should I make sure to continue to do? Every time, he tells me to go home and hug my parents.



Infection and sputum never had a chance in my young lungs...beacuse my parents did preventative therapy like CPT every day and every night.



If exercise was simply enough to keep the lungs clear, kids would ahve been living to their 40s like they are today back in the 60s, 70s, and 80s. Because they played and exercised just like they do today.



So why do kids live longer today than every before? preventative medicine. not reacting to when a problem arises. preventing the problem before it even has a chance.



Bottomline, Hayley is extremely fortunate to have you, Becky. As a person who has been in this game for 25 years, I have a more macro perspective on this issues and what I see is Hayley having an excellent chance to living to old age because of what you are doing for her today!</end quote></div>


Blah blah blah...bite me. Prevenative care.....bite me. You can do prevenative care until the cows come home and some are still going to get terribly sick. And yes maybe the prevenative care is helping maybe not. I am not saying we should throw it all out but I do think we are going overboard with it. And making it out to sound like "prevenative care" is the golden key to everlasting life is bologna. And I think it's crazy to just across the board say "everyone with CF should do this" we are all sooo different. And why why why would they do CPT on this kid who is so healthy right now? There will be a time when he probably has to start but if it's not right now...yeah for him. If he can have a few years free of that particular charming aspect of this disease....whoopee I say. You go boy. Go run run like the wind while you can. Be as normal as possible for as long as possible.

And the go home and hug your parents part. Hey my parents didn't miss a beat and my health sucks should I go give them a beat down? I mean it should go both ways right? The logic eludes me.

I have a problem with people with good PFT's wanting to take so much credit for them and then act like their good health makes them some kind of guru who knows what their talking about. Since my PFT's are crap does this mean I can't talk about taking care of ourselves. I mean obviously everything I did and my parents did must have been wrong? It couldn't just possibly be that CF is a sucky disease and it bites us all in the butt sooner or later at various ages in a multitude of ways?

I think this argument is a lot like the nature vs nurture thing and the answer probably lies somewhere in the middle.

Original poster I commend you for thinking on your own. Looking out for your kids best interest. Seeing your son as an individual and not just doing whatever the Dr.'s say like their a God. Dr.'s are Dr.'s they're going to prescribe and recommend etc. just like a surgeon is usually going to want to operate. It's up to you to sift through all of it and try to make the best choices and teach your kid how to do the same.

Amy: "Infection and sputum never had a chance in my young lungs...beacuse my parents did preventative therapy like CPT every day and every night."
Do you realize how arrogant that sounds? And how possibly insulting that could be to others?

 

[littledebbie]

not doing CPTs

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

Becky, you sound like my mother. At 25 years old, I have normal lung function with an FEV1 of 95%. In my childhood, I had very very little symptoms of CF. But my mother religiously used preventative therapies with me. I ask my doc frequency today why I am so healthy? What should I make sure to continue to do? Every time, he tells me to go home and hug my parents.



Infection and sputum never had a chance in my young lungs...beacuse my parents did preventative therapy like CPT every day and every night.



If exercise was simply enough to keep the lungs clear, kids would ahve been living to their 40s like they are today back in the 60s, 70s, and 80s. Because they played and exercised just like they do today.



So why do kids live longer today than every before? preventative medicine. not reacting to when a problem arises. preventing the problem before it even has a chance.



Bottomline, Hayley is extremely fortunate to have you, Becky. As a person who has been in this game for 25 years, I have a more macro perspective on this issues and what I see is Hayley having an excellent chance to living to old age because of what you are doing for her today!</end quote></div>


Blah blah blah...bite me. Prevenative care.....bite me. You can do prevenative care until the cows come home and some are still going to get terribly sick. And yes maybe the prevenative care is helping maybe not. I am not saying we should throw it all out but I do think we are going overboard with it. And making it out to sound like "prevenative care" is the golden key to everlasting life is bologna. And I think it's crazy to just across the board say "everyone with CF should do this" we are all sooo different. And why why why would they do CPT on this kid who is so healthy right now? There will be a time when he probably has to start but if it's not right now...yeah for him. If he can have a few years free of that particular charming aspect of this disease....whoopee I say. You go boy. Go run run like the wind while you can. Be as normal as possible for as long as possible.

And the go home and hug your parents part. Hey my parents didn't miss a beat and my health sucks should I go give them a beat down? I mean it should go both ways right? The logic eludes me.

I have a problem with people with good PFT's wanting to take so much credit for them and then act like their good health makes them some kind of guru who knows what their talking about. Since my PFT's are crap does this mean I can't talk about taking care of ourselves. I mean obviously everything I did and my parents did must have been wrong? It couldn't just possibly be that CF is a sucky disease and it bites us all in the butt sooner or later at various ages in a multitude of ways?

I think this argument is a lot like the nature vs nurture thing and the answer probably lies somewhere in the middle.

Original poster I commend you for thinking on your own. Looking out for your kids best interest. Seeing your son as an individual and not just doing whatever the Dr.'s say like their a God. Dr.'s are Dr.'s they're going to prescribe and recommend etc. just like a surgeon is usually going to want to operate. It's up to you to sift through all of it and try to make the best choices and teach your kid how to do the same.

Amy: "Infection and sputum never had a chance in my young lungs...beacuse my parents did preventative therapy like CPT every day and every night."
Do you realize how arrogant that sounds? And how possibly insulting that could be to others?

 

[NoExcuses]

not doing CPTs

<i>Originally posted by: <b>littledebbie</b></i>

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

Hey my parents didn't miss a beat and my health sucks should I go give them a beat down? I mean it should go both ways right? The logic eludes me.

</end quote></div> Whoa there. Because your parents helped you, you're probably much better off than if they didn't. So definitely go give them a big hug too.... you have probably lived longer than you would have if your parents hadn't "missed a beat" as you said.

<div class="FTQUOTE"><begin quote>Since my PFT's are crap does this mean I can't talk about taking care of ourselves. </end quote></div>

All I was saying is that I'm healthier than I would have been if my parents didn't do CPT with me. That's all. I'm not comparing myself to other CFers. I'm comparing myself to my theoretical self. CF varies widely, like you said. But I know for sure if I didn't do meds that I would be much worse off than I am today. I've gone days without meds and I've seen what I'm like. Not pretty. And I still stand by the fact that it sounds like you're healthier than u would have been and you have lived longer than you would have as a result of your parents helping you out as a kid. That's all I'm saying.

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

Amy: "Infection and sputum never had a chance in my young lungs...beacuse my parents did preventative therapy like CPT every day and every night."

Do you realize how arrogant that sounds? And how possibly insulting that could be to others?</end quote></div>


It's stating a fact. There are very few differences between the CF patients of today and the CF patients of 40 year ago. Meds is one of them. This includes CPT.