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Always mucus??

M

mneville

Guest
My three year old just had a bronch. I was upset to see that he did have thick mucus in his lungs even after doing the VEST for an hour daily with other meds. I thought it would be thinner or less of it??

My question is: do all CFers live with a certain level of sticky mucus in their lungs and still have high PFTs? How can one tell when there is an active infection or the cough is just a sign of trying to clear mucus- like a normal CF cough? I am just confused. We now do Pulmozyne twice a day to thin it out. Is there permanent damage just from having the mucus?? Everytime I think I have CF figured out, I get confused. I thought the Respirtech VEST would thin the mucus like normal mucus?

Megan, mom to Aidan and Gavin
 
M

mneville

Guest
My three year old just had a bronch. I was upset to see that he did have thick mucus in his lungs even after doing the VEST for an hour daily with other meds. I thought it would be thinner or less of it??

My question is: do all CFers live with a certain level of sticky mucus in their lungs and still have high PFTs? How can one tell when there is an active infection or the cough is just a sign of trying to clear mucus- like a normal CF cough? I am just confused. We now do Pulmozyne twice a day to thin it out. Is there permanent damage just from having the mucus?? Everytime I think I have CF figured out, I get confused. I thought the Respirtech VEST would thin the mucus like normal mucus?

Megan, mom to Aidan and Gavin
 
M

mneville

Guest
My three year old just had a bronch. I was upset to see that he did have thick mucus in his lungs even after doing the VEST for an hour daily with other meds. I thought it would be thinner or less of it??

My question is: do all CFers live with a certain level of sticky mucus in their lungs and still have high PFTs? How can one tell when there is an active infection or the cough is just a sign of trying to clear mucus- like a normal CF cough? I am just confused. We now do Pulmozyne twice a day to thin it out. Is there permanent damage just from having the mucus?? Everytime I think I have CF figured out, I get confused. I thought the Respirtech VEST would thin the mucus like normal mucus?

Megan, mom to Aidan and Gavin
 
M

mneville

Guest
My three year old just had a bronch. I was upset to see that he did have thick mucus in his lungs even after doing the VEST for an hour daily with other meds. I thought it would be thinner or less of it??

My question is: do all CFers live with a certain level of sticky mucus in their lungs and still have high PFTs? How can one tell when there is an active infection or the cough is just a sign of trying to clear mucus- like a normal CF cough? I am just confused. We now do Pulmozyne twice a day to thin it out. Is there permanent damage just from having the mucus?? Everytime I think I have CF figured out, I get confused. I thought the Respirtech VEST would thin the mucus like normal mucus?

Megan, mom to Aidan and Gavin
 
M

mneville

Guest
My three year old just had a bronch. I was upset to see that he did have thick mucus in his lungs even after doing the VEST for an hour daily with other meds. I thought it would be thinner or less of it??
<br />
<br />My question is: do all CFers live with a certain level of sticky mucus in their lungs and still have high PFTs? How can one tell when there is an active infection or the cough is just a sign of trying to clear mucus- like a normal CF cough? I am just confused. We now do Pulmozyne twice a day to thin it out. Is there permanent damage just from having the mucus?? Everytime I think I have CF figured out, I get confused. I thought the Respirtech VEST would thin the mucus like normal mucus?
<br />
<br />Megan, mom to Aidan and Gavin
 
H

hopesiris

Guest
Hi Megan,

Yes, a CFer has mucus but can still have high PFT's. The point of doing the vest is to shake it loose so it can be coughed out, clearing the airways. There is no way to get rid of all of it, but with compliance to treatment and also exercise, the lungs can be kept clearer. Signs of active infection are like what you'd get if you had one- fatigue, fever, swollen lymph nodes, etc. The mucus itself doesn't cause the damage as far as I know because I have no permanent lung damage yet.
 
H

hopesiris

Guest
Hi Megan,

Yes, a CFer has mucus but can still have high PFT's. The point of doing the vest is to shake it loose so it can be coughed out, clearing the airways. There is no way to get rid of all of it, but with compliance to treatment and also exercise, the lungs can be kept clearer. Signs of active infection are like what you'd get if you had one- fatigue, fever, swollen lymph nodes, etc. The mucus itself doesn't cause the damage as far as I know because I have no permanent lung damage yet.
 
H

hopesiris

Guest
Hi Megan,

Yes, a CFer has mucus but can still have high PFT's. The point of doing the vest is to shake it loose so it can be coughed out, clearing the airways. There is no way to get rid of all of it, but with compliance to treatment and also exercise, the lungs can be kept clearer. Signs of active infection are like what you'd get if you had one- fatigue, fever, swollen lymph nodes, etc. The mucus itself doesn't cause the damage as far as I know because I have no permanent lung damage yet.
 
H

hopesiris

Guest
Hi Megan,

Yes, a CFer has mucus but can still have high PFT's. The point of doing the vest is to shake it loose so it can be coughed out, clearing the airways. There is no way to get rid of all of it, but with compliance to treatment and also exercise, the lungs can be kept clearer. Signs of active infection are like what you'd get if you had one- fatigue, fever, swollen lymph nodes, etc. The mucus itself doesn't cause the damage as far as I know because I have no permanent lung damage yet.
 
H

hopesiris

Guest
Hi Megan,
<br />
<br />Yes, a CFer has mucus but can still have high PFT's. The point of doing the vest is to shake it loose so it can be coughed out, clearing the airways. There is no way to get rid of all of it, but with compliance to treatment and also exercise, the lungs can be kept clearer. Signs of active infection are like what you'd get if you had one- fatigue, fever, swollen lymph nodes, etc. The mucus itself doesn't cause the damage as far as I know because I have no permanent lung damage yet.
 
N

NYCLawGirl

New member
My understanding (and I am so not a doctor) is that the damage is caused both by the mucus, which can actually "plug" the airways, and by the nasty little bugs that live in the mucus. Permanent lung damage for CFers can mean scar tissue or inflammation in the lungs. Or other stuff, I'm sure.

Megan, I'm sure it was scary to have your son get a bronch. As long as he has CF, he will almost definitely have mucus, but that doesn't mean he will start to culture bad bugs or that he will necessarily develop lung damage. I know that's not very helpful, but if his PFTs are still high and he feels good then I wouldn't let it scare me too much. Hopefully we can kick this disease to the curb soon and it won't be an issue for your son in his adult life!
 
N

NYCLawGirl

New member
My understanding (and I am so not a doctor) is that the damage is caused both by the mucus, which can actually "plug" the airways, and by the nasty little bugs that live in the mucus. Permanent lung damage for CFers can mean scar tissue or inflammation in the lungs. Or other stuff, I'm sure.

Megan, I'm sure it was scary to have your son get a bronch. As long as he has CF, he will almost definitely have mucus, but that doesn't mean he will start to culture bad bugs or that he will necessarily develop lung damage. I know that's not very helpful, but if his PFTs are still high and he feels good then I wouldn't let it scare me too much. Hopefully we can kick this disease to the curb soon and it won't be an issue for your son in his adult life!
 
N

NYCLawGirl

New member
My understanding (and I am so not a doctor) is that the damage is caused both by the mucus, which can actually "plug" the airways, and by the nasty little bugs that live in the mucus. Permanent lung damage for CFers can mean scar tissue or inflammation in the lungs. Or other stuff, I'm sure.

Megan, I'm sure it was scary to have your son get a bronch. As long as he has CF, he will almost definitely have mucus, but that doesn't mean he will start to culture bad bugs or that he will necessarily develop lung damage. I know that's not very helpful, but if his PFTs are still high and he feels good then I wouldn't let it scare me too much. Hopefully we can kick this disease to the curb soon and it won't be an issue for your son in his adult life!
 
N

NYCLawGirl

New member
My understanding (and I am so not a doctor) is that the damage is caused both by the mucus, which can actually "plug" the airways, and by the nasty little bugs that live in the mucus. Permanent lung damage for CFers can mean scar tissue or inflammation in the lungs. Or other stuff, I'm sure.

Megan, I'm sure it was scary to have your son get a bronch. As long as he has CF, he will almost definitely have mucus, but that doesn't mean he will start to culture bad bugs or that he will necessarily develop lung damage. I know that's not very helpful, but if his PFTs are still high and he feels good then I wouldn't let it scare me too much. Hopefully we can kick this disease to the curb soon and it won't be an issue for your son in his adult life!
 
N

NYCLawGirl

New member
My understanding (and I am so not a doctor) is that the damage is caused both by the mucus, which can actually "plug" the airways, and by the nasty little bugs that live in the mucus. Permanent lung damage for CFers can mean scar tissue or inflammation in the lungs. Or other stuff, I'm sure.
<br />
<br />Megan, I'm sure it was scary to have your son get a bronch. As long as he has CF, he will almost definitely have mucus, but that doesn't mean he will start to culture bad bugs or that he will necessarily develop lung damage. I know that's not very helpful, but if his PFTs are still high and he feels good then I wouldn't let it scare me too much. Hopefully we can kick this disease to the curb soon and it won't be an issue for your son in his adult life!
 
L

Liza

New member
Hi Megan, CF'ers almost always will have mucus in their lungs. Some can cough enough to get some of it up and out others can not. The vest, the Pulmozyme, TOBI, it'a all there to try and prevent or minimalize damage caused by repeated infections. Pulmozyme helps to thin the mucus so it can hopefully make it easier to cough up, the vest (percussion in general, all the different ways for CPT) is to help loosen it, so it can be thinned so it can be more easily coughed up and out. That is why exercise is so important. Usually exercise will enduce coughing. For CF'ers, coughing is a GOOD thing something never to be suppressed. Although when they're coughing all night long and they and you need to sleep they will occassionally prescribe something so that the patient can get some rest. When the mucus sits in there unable to get out or moving then it is more vulnerable to infection.

Years ago they used to think that going in there and sucking out all the mucus would help but they soon found out that it didn't.It was a very short term benefit. That within a certain amount of time ( I can't recall how much time, weeks, months) there would be that same amount of mucus built up again. OK, you would think, doesn't that mean that if they hadn't sucked it out, that there would have been even more? Yea, I thought that way too, but there was no real explaination from the doc. on that theory. Now this was all told to me by our girls' Dutch doctor when we were stationed in Germany. Whether this was something they practiced in Europe and not stateside I don't know.

I hope this helps a little. This is how we have explained CF, coughing, the whole infection process, treatments and how they are supposed to work to our family.
 
L

Liza

New member
Hi Megan, CF'ers almost always will have mucus in their lungs. Some can cough enough to get some of it up and out others can not. The vest, the Pulmozyme, TOBI, it'a all there to try and prevent or minimalize damage caused by repeated infections. Pulmozyme helps to thin the mucus so it can hopefully make it easier to cough up, the vest (percussion in general, all the different ways for CPT) is to help loosen it, so it can be thinned so it can be more easily coughed up and out. That is why exercise is so important. Usually exercise will enduce coughing. For CF'ers, coughing is a GOOD thing something never to be suppressed. Although when they're coughing all night long and they and you need to sleep they will occassionally prescribe something so that the patient can get some rest. When the mucus sits in there unable to get out or moving then it is more vulnerable to infection.

Years ago they used to think that going in there and sucking out all the mucus would help but they soon found out that it didn't.It was a very short term benefit. That within a certain amount of time ( I can't recall how much time, weeks, months) there would be that same amount of mucus built up again. OK, you would think, doesn't that mean that if they hadn't sucked it out, that there would have been even more? Yea, I thought that way too, but there was no real explaination from the doc. on that theory. Now this was all told to me by our girls' Dutch doctor when we were stationed in Germany. Whether this was something they practiced in Europe and not stateside I don't know.

I hope this helps a little. This is how we have explained CF, coughing, the whole infection process, treatments and how they are supposed to work to our family.
 
L

Liza

New member
Hi Megan, CF'ers almost always will have mucus in their lungs. Some can cough enough to get some of it up and out others can not. The vest, the Pulmozyme, TOBI, it'a all there to try and prevent or minimalize damage caused by repeated infections. Pulmozyme helps to thin the mucus so it can hopefully make it easier to cough up, the vest (percussion in general, all the different ways for CPT) is to help loosen it, so it can be thinned so it can be more easily coughed up and out. That is why exercise is so important. Usually exercise will enduce coughing. For CF'ers, coughing is a GOOD thing something never to be suppressed. Although when they're coughing all night long and they and you need to sleep they will occassionally prescribe something so that the patient can get some rest. When the mucus sits in there unable to get out or moving then it is more vulnerable to infection.

Years ago they used to think that going in there and sucking out all the mucus would help but they soon found out that it didn't.It was a very short term benefit. That within a certain amount of time ( I can't recall how much time, weeks, months) there would be that same amount of mucus built up again. OK, you would think, doesn't that mean that if they hadn't sucked it out, that there would have been even more? Yea, I thought that way too, but there was no real explaination from the doc. on that theory. Now this was all told to me by our girls' Dutch doctor when we were stationed in Germany. Whether this was something they practiced in Europe and not stateside I don't know.

I hope this helps a little. This is how we have explained CF, coughing, the whole infection process, treatments and how they are supposed to work to our family.
 
L

Liza

New member
Hi Megan, CF'ers almost always will have mucus in their lungs. Some can cough enough to get some of it up and out others can not. The vest, the Pulmozyme, TOBI, it'a all there to try and prevent or minimalize damage caused by repeated infections. Pulmozyme helps to thin the mucus so it can hopefully make it easier to cough up, the vest (percussion in general, all the different ways for CPT) is to help loosen it, so it can be thinned so it can be more easily coughed up and out. That is why exercise is so important. Usually exercise will enduce coughing. For CF'ers, coughing is a GOOD thing something never to be suppressed. Although when they're coughing all night long and they and you need to sleep they will occassionally prescribe something so that the patient can get some rest. When the mucus sits in there unable to get out or moving then it is more vulnerable to infection.

Years ago they used to think that going in there and sucking out all the mucus would help but they soon found out that it didn't.It was a very short term benefit. That within a certain amount of time ( I can't recall how much time, weeks, months) there would be that same amount of mucus built up again. OK, you would think, doesn't that mean that if they hadn't sucked it out, that there would have been even more? Yea, I thought that way too, but there was no real explaination from the doc. on that theory. Now this was all told to me by our girls' Dutch doctor when we were stationed in Germany. Whether this was something they practiced in Europe and not stateside I don't know.

I hope this helps a little. This is how we have explained CF, coughing, the whole infection process, treatments and how they are supposed to work to our family.
 
L

Liza

New member
Hi Megan, CF'ers almost always will have mucus in their lungs. Some can cough enough to get some of it up and out others can not. The vest, the Pulmozyme, TOBI, it'a all there to try and prevent or minimalize damage caused by repeated infections. Pulmozyme helps to thin the mucus so it can hopefully make it easier to cough up, the vest (percussion in general, all the different ways for CPT) is to help loosen it, so it can be thinned so it can be more easily coughed up and out. That is why exercise is so important. Usually exercise will enduce coughing. For CF'ers, coughing is a GOOD thing something never to be suppressed. Although when they're coughing all night long and they and you need to sleep they will occassionally prescribe something so that the patient can get some rest. When the mucus sits in there unable to get out or moving then it is more vulnerable to infection.
<br />
<br />Years ago they used to think that going in there and sucking out all the mucus would help but they soon found out that it didn't.It was a very short term benefit. That within a certain amount of time ( I can't recall how much time, weeks, months) there would be that same amount of mucus built up again. OK, you would think, doesn't that mean that if they hadn't sucked it out, that there would have been even more? Yea, I thought that way too, but there was no real explaination from the doc. on that theory. Now this was all told to me by our girls' Dutch doctor when we were stationed in Germany. Whether this was something they practiced in Europe and not stateside I don't know.
<br />
<br />I hope this helps a little. This is how we have explained CF, coughing, the whole infection process, treatments and how they are supposed to work to our family.
<br />
<br />
<br />
<br />
 
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