Interesting Video

[NoExcuses]

I'm a strong believer that if patients understand how a med works, they will be far more compliant with the med.

I found myself in 2003 getting too lazy to do my Pulmozyme. I was working my 1st job, time was limited. I didn't see an immediate impact of not taking the med, so I stopped it all together for about 3 months. The result? Ya, you guessed it... infection. hemoptasis. and lots of trouble.

I wish I would have had this video back then to help me understand what the heck this med does. I think those of you on Pulmozyme or those who are considering taking it will benefit from the video to understand the med's MOA:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.pulmozyme.com/patient/2_5_animation.jsp">http://www.pulmozyme.com/patient/2_5_animation.jsp</a>

 

[NoExcuses]

I'm a strong believer that if patients understand how a med works, they will be far more compliant with the med.

I found myself in 2003 getting too lazy to do my Pulmozyme. I was working my 1st job, time was limited. I didn't see an immediate impact of not taking the med, so I stopped it all together for about 3 months. The result? Ya, you guessed it... infection. hemoptasis. and lots of trouble.

I wish I would have had this video back then to help me understand what the heck this med does. I think those of you on Pulmozyme or those who are considering taking it will benefit from the video to understand the med's MOA:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.pulmozyme.com/patient/2_5_animation.jsp">http://www.pulmozyme.com/patient/2_5_animation.jsp</a>

 

[NoExcuses]

I'm a strong believer that if patients understand how a med works, they will be far more compliant with the med.

I found myself in 2003 getting too lazy to do my Pulmozyme. I was working my 1st job, time was limited. I didn't see an immediate impact of not taking the med, so I stopped it all together for about 3 months. The result? Ya, you guessed it... infection. hemoptasis. and lots of trouble.

I wish I would have had this video back then to help me understand what the heck this med does. I think those of you on Pulmozyme or those who are considering taking it will benefit from the video to understand the med's MOA:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.pulmozyme.com/patient/2_5_animation.jsp">http://www.pulmozyme.com/patient/2_5_animation.jsp</a>

 

[Jem]

Thanks for the link...it does help explain its purpose well. I take pulmozyme once a day but I always wondered if I should be taking it twice a day. Do you take it twice a day?

 

[Jem]

Thanks for the link...it does help explain its purpose well. I take pulmozyme once a day but I always wondered if I should be taking it twice a day. Do you take it twice a day?

 

[Jem]

Thanks for the link...it does help explain its purpose well. I take pulmozyme once a day but I always wondered if I should be taking it twice a day. Do you take it twice a day?

 

[JazzysMom]

OK Did I understand the video correctly? When our immune systems send the white blood cells to attempt & fight the infection.....the cells will breakdown into the enzyme/dna form which adds to the already problematic mucous? SOOOOO in many ways we wouldnt want our immune symstems to kick in. I would think this is just for "CF related bugs" and not normal cold etc or would it apply to everything? It makes me wonder about the thought process of "letting us building our immune system". Am I over thinking this or just taking it out of text? Curious!!!

 

[JazzysMom]

OK Did I understand the video correctly? When our immune systems send the white blood cells to attempt & fight the infection.....the cells will breakdown into the enzyme/dna form which adds to the already problematic mucous? SOOOOO in many ways we wouldnt want our immune symstems to kick in. I would think this is just for "CF related bugs" and not normal cold etc or would it apply to everything? It makes me wonder about the thought process of "letting us building our immune system". Am I over thinking this or just taking it out of text? Curious!!!

 

[JazzysMom]

OK Did I understand the video correctly? When our immune systems send the white blood cells to attempt & fight the infection.....the cells will breakdown into the enzyme/dna form which adds to the already problematic mucous? SOOOOO in many ways we wouldnt want our immune symstems to kick in. I would think this is just for "CF related bugs" and not normal cold etc or would it apply to everything? It makes me wonder about the thought process of "letting us building our immune system". Am I over thinking this or just taking it out of text? Curious!!!

 

[Sakem]

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

I found myself in 2003 getting too lazy to do my Pulmozyme. I was working my 1st job, time was limited. I didn't see an immediate impact of not taking the med, so I stopped it all together for about 3 months. [/L]</end quote></div>


I think this is a common response for many young people as yourself. When things are going good, denial of CF can be convienient.

Doctors should educate their patients about the actions and importance of drugs they are prescribing, but the patient is ultimately the one responsible for reading the drug info and educating themselve why some things are important, even if they so not have an immediate onset of action. If someone is too lazy to do this, then I can see why someone would be too lazy to do the drug.

 

[Sakem]

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

I found myself in 2003 getting too lazy to do my Pulmozyme. I was working my 1st job, time was limited. I didn't see an immediate impact of not taking the med, so I stopped it all together for about 3 months. [/L]</end quote></div>


I think this is a common response for many young people as yourself. When things are going good, denial of CF can be convienient.

Doctors should educate their patients about the actions and importance of drugs they are prescribing, but the patient is ultimately the one responsible for reading the drug info and educating themselve why some things are important, even if they so not have an immediate onset of action. If someone is too lazy to do this, then I can see why someone would be too lazy to do the drug.

 

[Sakem]

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

I found myself in 2003 getting too lazy to do my Pulmozyme. I was working my 1st job, time was limited. I didn't see an immediate impact of not taking the med, so I stopped it all together for about 3 months. [/L]</end quote></div>


I think this is a common response for many young people as yourself. When things are going good, denial of CF can be convienient.

Doctors should educate their patients about the actions and importance of drugs they are prescribing, but the patient is ultimately the one responsible for reading the drug info and educating themselve why some things are important, even if they so not have an immediate onset of action. If someone is too lazy to do this, then I can see why someone would be too lazy to do the drug.

 

[AnD]

Thanks for the link, Amy. I did have all this explained to me when I was in the final drug study, so, except for the year or so I took off when we first started trying to get pregnant (another cf dr. put me back on, saying that the molecule was too large to pass through the placenta, and he didn't think it would be a problem- I'm very grateful to him for doing the research) I've taken it religously, and now am on it twice a day (as it turned out I was in the drug study, when I had the best results <img src="i/expressions/face-icon-small-wink.gif" border="0"> ). Apparently, for the majority of cfers, once a day is just as effective as twice a day- but for me, twice a day is needed to show improvement <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[AnD]

Thanks for the link, Amy. I did have all this explained to me when I was in the final drug study, so, except for the year or so I took off when we first started trying to get pregnant (another cf dr. put me back on, saying that the molecule was too large to pass through the placenta, and he didn't think it would be a problem- I'm very grateful to him for doing the research) I've taken it religously, and now am on it twice a day (as it turned out I was in the drug study, when I had the best results <img src="i/expressions/face-icon-small-wink.gif" border="0"> ). Apparently, for the majority of cfers, once a day is just as effective as twice a day- but for me, twice a day is needed to show improvement <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[AnD]

Thanks for the link, Amy. I did have all this explained to me when I was in the final drug study, so, except for the year or so I took off when we first started trying to get pregnant (another cf dr. put me back on, saying that the molecule was too large to pass through the placenta, and he didn't think it would be a problem- I'm very grateful to him for doing the research) I've taken it religously, and now am on it twice a day (as it turned out I was in the drug study, when I had the best results <img src="i/expressions/face-icon-small-wink.gif" border="0"> ). Apparently, for the majority of cfers, once a day is just as effective as twice a day- but for me, twice a day is needed to show improvement <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[NoExcuses]

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

SOOOOO in many ways we wouldnt want our immune symstems to kick in. I would think this is just for "CF related bugs" and not normal cold etc or would it apply to everything? </end quote></div>

You're right. The human body does not have the ability to destroy PA or Cepacia on it's own... but it still constantly tries to fight the bacteria creating this crazy inflammation/white blood cell cycle that ends up hurting our lungs.

This is why it's so hard for us to recover from colds as well. There's already a great deal of inflammation & white blood cells in the airways, so when the body fights a virus (which it is always successfully in killing, unless you die from a virus), the same process occures as when the body tries to fight CF bacteria.


<div class="FTQUOTE"><begin quote> It makes me wonder about the thought process of "letting us building our immune system"</end quote></div>

This happens whether you let it or not. When you're exposed to viruses, your body builds up a memory bank of how to fight them for future exposures. You have a memory bank of all the viruses you've been exposed to throughout your whole life. AND, if your mother breast fed, you have her body's memory bank as well.

Problem is that viruses mutate so this memory bank is often useless to new viruses that circulate every year.

 

[NoExcuses]

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

SOOOOO in many ways we wouldnt want our immune symstems to kick in. I would think this is just for "CF related bugs" and not normal cold etc or would it apply to everything? </end quote></div>

You're right. The human body does not have the ability to destroy PA or Cepacia on it's own... but it still constantly tries to fight the bacteria creating this crazy inflammation/white blood cell cycle that ends up hurting our lungs.

This is why it's so hard for us to recover from colds as well. There's already a great deal of inflammation & white blood cells in the airways, so when the body fights a virus (which it is always successfully in killing, unless you die from a virus), the same process occures as when the body tries to fight CF bacteria.


<div class="FTQUOTE"><begin quote> It makes me wonder about the thought process of "letting us building our immune system"</end quote></div>

This happens whether you let it or not. When you're exposed to viruses, your body builds up a memory bank of how to fight them for future exposures. You have a memory bank of all the viruses you've been exposed to throughout your whole life. AND, if your mother breast fed, you have her body's memory bank as well.

Problem is that viruses mutate so this memory bank is often useless to new viruses that circulate every year.

 

[NoExcuses]

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

SOOOOO in many ways we wouldnt want our immune symstems to kick in. I would think this is just for "CF related bugs" and not normal cold etc or would it apply to everything? </end quote></div>

You're right. The human body does not have the ability to destroy PA or Cepacia on it's own... but it still constantly tries to fight the bacteria creating this crazy inflammation/white blood cell cycle that ends up hurting our lungs.

This is why it's so hard for us to recover from colds as well. There's already a great deal of inflammation & white blood cells in the airways, so when the body fights a virus (which it is always successfully in killing, unless you die from a virus), the same process occures as when the body tries to fight CF bacteria.


<div class="FTQUOTE"><begin quote> It makes me wonder about the thought process of "letting us building our immune system"</end quote></div>

This happens whether you let it or not. When you're exposed to viruses, your body builds up a memory bank of how to fight them for future exposures. You have a memory bank of all the viruses you've been exposed to throughout your whole life. AND, if your mother breast fed, you have her body's memory bank as well.

Problem is that viruses mutate so this memory bank is often useless to new viruses that circulate every year.

 

[NoExcuses]

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

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



I found myself in 2003 getting too lazy to do my Pulmozyme. I was working my 1st job, time was limited. I didn't see an immediate impact of not taking the med, so I stopped it all together for about 3 months. [/L]</end quote></div>





I think this is a common response for many young people as yourself. When things are going good, denial of CF can be convienient. </end quote></div>

For me it wasn't denial, it was just thinking hey, this drug doens't seem to do anything for me. I did all the rest of my nebs - my albuterol, TOBI and my Vest.



<div class="FTQUOTE"><begin quote>Doctors should educate their patients about the actions and importance of drugs they are prescribing, but the patient is ultimately the one responsible for reading the drug info and educating themselve why some things are important, even if they so not have an immediate onset of action.</end quote></div>

I agree 100%

The problem that I see in adult clinicis is that, especially at my clinic, when meds are initiated as a ped, meds aren't re-explained as an adult. I've been on this med since my early teens, so I doubt my doc though, "wow, she's been on the med for a decade, it's time to re-explain to her why this med is important." But that's just the ticket - the mind of a 22 year old is different than a 14 year old. So it's on the adult clinics to make sure patients understand meds, even if they've been on them for a long time.

Needless to say I've been compliant for the past 3 years. It's a great drug.

 

[NoExcuses]

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

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



I found myself in 2003 getting too lazy to do my Pulmozyme. I was working my 1st job, time was limited. I didn't see an immediate impact of not taking the med, so I stopped it all together for about 3 months. [/L]</end quote></div>





I think this is a common response for many young people as yourself. When things are going good, denial of CF can be convienient. </end quote></div>

For me it wasn't denial, it was just thinking hey, this drug doens't seem to do anything for me. I did all the rest of my nebs - my albuterol, TOBI and my Vest.



<div class="FTQUOTE"><begin quote>Doctors should educate their patients about the actions and importance of drugs they are prescribing, but the patient is ultimately the one responsible for reading the drug info and educating themselve why some things are important, even if they so not have an immediate onset of action.</end quote></div>

I agree 100%

The problem that I see in adult clinicis is that, especially at my clinic, when meds are initiated as a ped, meds aren't re-explained as an adult. I've been on this med since my early teens, so I doubt my doc though, "wow, she's been on the med for a decade, it's time to re-explain to her why this med is important." But that's just the ticket - the mind of a 22 year old is different than a 14 year old. So it's on the adult clinics to make sure patients understand meds, even if they've been on them for a long time.

Needless to say I've been compliant for the past 3 years. It's a great drug.