hypertonic saline vs. pulmozyme

[mom2lillian]

I have read some articles showing that some just dont respond well to pulmozyme, there are a # of theories as to why. Whether or not you and your son 'feel' the treatments are doing good they most assuradely are so please do not set a bad example for your son by allowing him to think that it is ok to 'decide' if something is worth it or not. Compliance is so important in this disease and he can only learn it from you. I know as I have been very bad with compliance before and thought it to be making little to no difference until I got to the point like lightnlife mentions of always being compliant and then you can really see the difference. If you son is getting 'the cough' now is key to teach him to be regimented. I am not trying to come down on you as I have beent here before, I am just trying to tell you my experience. I sincerely hope HTS will give you the desired affects

btw I go to kalamazoo clinic what one did you go to?

 

[mom2lillian]

I have read some articles showing that some just dont respond well to pulmozyme, there are a # of theories as to why. Whether or not you and your son 'feel' the treatments are doing good they most assuradely are so please do not set a bad example for your son by allowing him to think that it is ok to 'decide' if something is worth it or not. Compliance is so important in this disease and he can only learn it from you. I know as I have been very bad with compliance before and thought it to be making little to no difference until I got to the point like lightnlife mentions of always being compliant and then you can really see the difference. If you son is getting 'the cough' now is key to teach him to be regimented. I am not trying to come down on you as I have beent here before, I am just trying to tell you my experience. I sincerely hope HTS will give you the desired affects

btw I go to kalamazoo clinic what one did you go to?

 

[lightNlife]

Good point Nicole about some people not responding well to Pulmozyme. Back when it was first available I was one of the first people in the country to have it. At that time I didn't have much lung involvement with my CF, and the longer I did Pulmozyme, I started to notice that I was having a really weird cough with hemoptysis. The doctor told me (after looking at a chest x-ray) that what was probably happening was that the mucolytic (mucus cutting) property of the P-zyme wasn't finding any thick mucus to act on, so it was lysing (cutting apart) some of the lining of my lungs. We discontinued the P-zyme. After a 10+ year break, I am on it again. I have MUCH more lung involvement now and I'm finding that the P-zyme is really helping break things up so I can cough it up and out with the aid of a vest.

So long story short, some people don't tolerate it. But that doesn't mean you can't try again later.

 

[lightNlife]

Good point Nicole about some people not responding well to Pulmozyme. Back when it was first available I was one of the first people in the country to have it. At that time I didn't have much lung involvement with my CF, and the longer I did Pulmozyme, I started to notice that I was having a really weird cough with hemoptysis. The doctor told me (after looking at a chest x-ray) that what was probably happening was that the mucolytic (mucus cutting) property of the P-zyme wasn't finding any thick mucus to act on, so it was lysing (cutting apart) some of the lining of my lungs. We discontinued the P-zyme. After a 10+ year break, I am on it again. I have MUCH more lung involvement now and I'm finding that the P-zyme is really helping break things up so I can cough it up and out with the aid of a vest.

So long story short, some people don't tolerate it. But that doesn't mean you can't try again later.

 

[lightNlife]

Good point Nicole about some people not responding well to Pulmozyme. Back when it was first available I was one of the first people in the country to have it. At that time I didn't have much lung involvement with my CF, and the longer I did Pulmozyme, I started to notice that I was having a really weird cough with hemoptysis. The doctor told me (after looking at a chest x-ray) that what was probably happening was that the mucolytic (mucus cutting) property of the P-zyme wasn't finding any thick mucus to act on, so it was lysing (cutting apart) some of the lining of my lungs. We discontinued the P-zyme. After a 10+ year break, I am on it again. I have MUCH more lung involvement now and I'm finding that the P-zyme is really helping break things up so I can cough it up and out with the aid of a vest.

So long story short, some people don't tolerate it. But that doesn't mean you can't try again later.

 

[lightNlife]

Good point Nicole about some people not responding well to Pulmozyme. Back when it was first available I was one of the first people in the country to have it. At that time I didn't have much lung involvement with my CF, and the longer I did Pulmozyme, I started to notice that I was having a really weird cough with hemoptysis. The doctor told me (after looking at a chest x-ray) that what was probably happening was that the mucolytic (mucus cutting) property of the P-zyme wasn't finding any thick mucus to act on, so it was lysing (cutting apart) some of the lining of my lungs. We discontinued the P-zyme. After a 10+ year break, I am on it again. I have MUCH more lung involvement now and I'm finding that the P-zyme is really helping break things up so I can cough it up and out with the aid of a vest.

So long story short, some people don't tolerate it. But that doesn't mean you can't try again later.

 

[lightNlife]

Good point Nicole about some people not responding well to Pulmozyme. Back when it was first available I was one of the first people in the country to have it. At that time I didn't have much lung involvement with my CF, and the longer I did Pulmozyme, I started to notice that I was having a really weird cough with hemoptysis. The doctor told me (after looking at a chest x-ray) that what was probably happening was that the mucolytic (mucus cutting) property of the P-zyme wasn't finding any thick mucus to act on, so it was lysing (cutting apart) some of the lining of my lungs. We discontinued the P-zyme. After a 10+ year break, I am on it again. I have MUCH more lung involvement now and I'm finding that the P-zyme is really helping break things up so I can cough it up and out with the aid of a vest.

So long story short, some people don't tolerate it. But that doesn't mean you can't try again later.

 

[lightNlife]

Good point Nicole about some people not responding well to Pulmozyme. Back when it was first available I was one of the first people in the country to have it. At that time I didn't have much lung involvement with my CF, and the longer I did Pulmozyme, I started to notice that I was having a really weird cough with hemoptysis. The doctor told me (after looking at a chest x-ray) that what was probably happening was that the mucolytic (mucus cutting) property of the P-zyme wasn't finding any thick mucus to act on, so it was lysing (cutting apart) some of the lining of my lungs. We discontinued the P-zyme. After a 10+ year break, I am on it again. I have MUCH more lung involvement now and I'm finding that the P-zyme is really helping break things up so I can cough it up and out with the aid of a vest.

So long story short, some people don't tolerate it. But that doesn't mean you can't try again later.

 

[NoExcuses]

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

I do both HS and Pulmozyme. I have written an article about neb treatments and CF, and how each of them work together to help us stay as infection free as possible.



I know it can sometimes feel like a waste of time to do treatments that don't seem to work. Don't let that be a reason to stop doing them! The key to managing CF is being diligent with treatments and doing all that's possible by way of preventive maintenance. Quite often I've found that although I don't necessarily "feel" better or notice a dramatic difference from some treatments, I do experience a lot of benefit from doing them all the time. For example, now that I'm exceptionally compliant with my treatments, I can notice immediately when something isn't quite right. It's sort of like getting to know a car. All those oil changes and tune ups, rotating the tires and checking the alignment may feel cumbersome, but when it's all working together smoothly, you can feel the difference.



Here's a link to my article about neb treatments: <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithcf.blogspot.com/search?q=bronchodilators">http://livingwellwithcf.blogsp...arch?q=bronchodilators</a></end quote></div>

Bingo!!!!

But as everyone else said, Pulmo and HTS are two totaly different meds with two totaly different affects.

And because you're not "seeing" the effects of a med certainly doesn't mean it's not working. Your son is counting on you to teach him to become compliant with meds (not just doing meds when/if you feel like it).

Keep us posted.

 

[NoExcuses]

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

I do both HS and Pulmozyme. I have written an article about neb treatments and CF, and how each of them work together to help us stay as infection free as possible.



I know it can sometimes feel like a waste of time to do treatments that don't seem to work. Don't let that be a reason to stop doing them! The key to managing CF is being diligent with treatments and doing all that's possible by way of preventive maintenance. Quite often I've found that although I don't necessarily "feel" better or notice a dramatic difference from some treatments, I do experience a lot of benefit from doing them all the time. For example, now that I'm exceptionally compliant with my treatments, I can notice immediately when something isn't quite right. It's sort of like getting to know a car. All those oil changes and tune ups, rotating the tires and checking the alignment may feel cumbersome, but when it's all working together smoothly, you can feel the difference.



Here's a link to my article about neb treatments: <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithcf.blogspot.com/search?q=bronchodilators">http://livingwellwithcf.blogsp...arch?q=bronchodilators</a></end quote></div>

Bingo!!!!

But as everyone else said, Pulmo and HTS are two totaly different meds with two totaly different affects.

And because you're not "seeing" the effects of a med certainly doesn't mean it's not working. Your son is counting on you to teach him to become compliant with meds (not just doing meds when/if you feel like it).

Keep us posted.

 

[NoExcuses]

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

I do both HS and Pulmozyme. I have written an article about neb treatments and CF, and how each of them work together to help us stay as infection free as possible.



I know it can sometimes feel like a waste of time to do treatments that don't seem to work. Don't let that be a reason to stop doing them! The key to managing CF is being diligent with treatments and doing all that's possible by way of preventive maintenance. Quite often I've found that although I don't necessarily "feel" better or notice a dramatic difference from some treatments, I do experience a lot of benefit from doing them all the time. For example, now that I'm exceptionally compliant with my treatments, I can notice immediately when something isn't quite right. It's sort of like getting to know a car. All those oil changes and tune ups, rotating the tires and checking the alignment may feel cumbersome, but when it's all working together smoothly, you can feel the difference.



Here's a link to my article about neb treatments: <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithcf.blogspot.com/search?q=bronchodilators">http://livingwellwithcf.blogsp...arch?q=bronchodilators</a></end quote></div>

Bingo!!!!

But as everyone else said, Pulmo and HTS are two totaly different meds with two totaly different affects.

And because you're not "seeing" the effects of a med certainly doesn't mean it's not working. Your son is counting on you to teach him to become compliant with meds (not just doing meds when/if you feel like it).

Keep us posted.

 

[NoExcuses]

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

I do both HS and Pulmozyme. I have written an article about neb treatments and CF, and how each of them work together to help us stay as infection free as possible.



I know it can sometimes feel like a waste of time to do treatments that don't seem to work. Don't let that be a reason to stop doing them! The key to managing CF is being diligent with treatments and doing all that's possible by way of preventive maintenance. Quite often I've found that although I don't necessarily "feel" better or notice a dramatic difference from some treatments, I do experience a lot of benefit from doing them all the time. For example, now that I'm exceptionally compliant with my treatments, I can notice immediately when something isn't quite right. It's sort of like getting to know a car. All those oil changes and tune ups, rotating the tires and checking the alignment may feel cumbersome, but when it's all working together smoothly, you can feel the difference.



Here's a link to my article about neb treatments: <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithcf.blogspot.com/search?q=bronchodilators">http://livingwellwithcf.blogsp...arch?q=bronchodilators</a></end quote></div>

Bingo!!!!

But as everyone else said, Pulmo and HTS are two totaly different meds with two totaly different affects.

And because you're not "seeing" the effects of a med certainly doesn't mean it's not working. Your son is counting on you to teach him to become compliant with meds (not just doing meds when/if you feel like it).

Keep us posted.

 

[NoExcuses]

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

I do both HS and Pulmozyme. I have written an article about neb treatments and CF, and how each of them work together to help us stay as infection free as possible.



I know it can sometimes feel like a waste of time to do treatments that don't seem to work. Don't let that be a reason to stop doing them! The key to managing CF is being diligent with treatments and doing all that's possible by way of preventive maintenance. Quite often I've found that although I don't necessarily "feel" better or notice a dramatic difference from some treatments, I do experience a lot of benefit from doing them all the time. For example, now that I'm exceptionally compliant with my treatments, I can notice immediately when something isn't quite right. It's sort of like getting to know a car. All those oil changes and tune ups, rotating the tires and checking the alignment may feel cumbersome, but when it's all working together smoothly, you can feel the difference.



Here's a link to my article about neb treatments: <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithcf.blogspot.com/search?q=bronchodilators">http://livingwellwithcf.blogsp...arch?q=bronchodilators</a></end quote>

Bingo!!!!

But as everyone else said, Pulmo and HTS are two totaly different meds with two totaly different affects.

And because you're not "seeing" the effects of a med certainly doesn't mean it's not working. Your son is counting on you to teach him to become compliant with meds (not just doing meds when/if you feel like it).

Keep us posted.

 

[NoExcuses]

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

I do both HS and Pulmozyme. I have written an article about neb treatments and CF, and how each of them work together to help us stay as infection free as possible.



I know it can sometimes feel like a waste of time to do treatments that don't seem to work. Don't let that be a reason to stop doing them! The key to managing CF is being diligent with treatments and doing all that's possible by way of preventive maintenance. Quite often I've found that although I don't necessarily "feel" better or notice a dramatic difference from some treatments, I do experience a lot of benefit from doing them all the time. For example, now that I'm exceptionally compliant with my treatments, I can notice immediately when something isn't quite right. It's sort of like getting to know a car. All those oil changes and tune ups, rotating the tires and checking the alignment may feel cumbersome, but when it's all working together smoothly, you can feel the difference.



Here's a link to my article about neb treatments: <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithcf.blogspot.com/search?q=bronchodilators">http://livingwellwithcf.blogsp...arch?q=bronchodilators</a></end quote>

Bingo!!!!

But as everyone else said, Pulmo and HTS are two totaly different meds with two totaly different affects.

And because you're not "seeing" the effects of a med certainly doesn't mean it's not working. Your son is counting on you to teach him to become compliant with meds (not just doing meds when/if you feel like it).

Keep us posted.

 

[Ratatosk]

DS is on pulmozyme and we really haven't noticed a difference. Last week he was having labs done and the RT used HTS on him to try to get a good sputum sample and I was AMAZED at how it really brought up the gunk. He usually doesn't cough or bring up anything. So we'll be inquring about HTS at his next clinic appointment.

 

[Ratatosk]

DS is on pulmozyme and we really haven't noticed a difference. Last week he was having labs done and the RT used HTS on him to try to get a good sputum sample and I was AMAZED at how it really brought up the gunk. He usually doesn't cough or bring up anything. So we'll be inquring about HTS at his next clinic appointment.

 

[Ratatosk]

DS is on pulmozyme and we really haven't noticed a difference. Last week he was having labs done and the RT used HTS on him to try to get a good sputum sample and I was AMAZED at how it really brought up the gunk. He usually doesn't cough or bring up anything. So we'll be inquring about HTS at his next clinic appointment.

 

[Ratatosk]

DS is on pulmozyme and we really haven't noticed a difference. Last week he was having labs done and the RT used HTS on him to try to get a good sputum sample and I was AMAZED at how it really brought up the gunk. He usually doesn't cough or bring up anything. So we'll be inquring about HTS at his next clinic appointment.

 

[Ratatosk]

DS is on pulmozyme and we really haven't noticed a difference. Last week he was having labs done and the RT used HTS on him to try to get a good sputum sample and I was AMAZED at how it really brought up the gunk. He usually doesn't cough or bring up anything. So we'll be inquring about HTS at his next clinic appointment.

 

[Ratatosk]

DS is on pulmozyme and we really haven't noticed a difference. Last week he was having labs done and the RT used HTS on him to try to get a good sputum sample and I was AMAZED at how it really brought up the gunk. He usually doesn't cough or bring up anything. So we'll be inquring about HTS at his next clinic appointment.