Not sure why

K

kayleesgrandma

New member
Kaylee only does a neb if she has a cold, which she has only had once...We have been blessed for the good health she has had so far...So all she does is the vest. I am waiting for the other shoe to fall...
 
K

kayleesgrandma

New member
Kaylee only does a neb if she has a cold, which she has only had once...We have been blessed for the good health she has had so far...So all she does is the vest. I am waiting for the other shoe to fall...
 
K

kayleesgrandma

New member
Kaylee only does a neb if she has a cold, which she has only had once...We have been blessed for the good health she has had so far...So all she does is the vest. I am waiting for the other shoe to fall...
 
K

kayleesgrandma

New member
Kaylee only does a neb if she has a cold, which she has only had once...We have been blessed for the good health she has had so far...So all she does is the vest. I am waiting for the other shoe to fall...
 
K

kayleesgrandma

New member
Kaylee only does a neb if she has a cold, which she has only had once...We have been blessed for the good health she has had so far...So all she does is the vest. I am waiting for the other shoe to fall...
 
R

Ratatosk

Administrator
Staff member
I do seem to recall some previous discussions regarding pulmozyme where individuals indicated it had decreased their lung function.
 
R

Ratatosk

Administrator
Staff member
I do seem to recall some previous discussions regarding pulmozyme where individuals indicated it had decreased their lung function.
 
R

Ratatosk

Administrator
Staff member
I do seem to recall some previous discussions regarding pulmozyme where individuals indicated it had decreased their lung function.
 
R

Ratatosk

Administrator
Staff member
I do seem to recall some previous discussions regarding pulmozyme where individuals indicated it had decreased their lung function.
 
R

Ratatosk

Administrator
Staff member
I do seem to recall some previous discussions regarding pulmozyme where individuals indicated it had decreased their lung function.
 
J

JennifersHope

New member
I know for me certain of the inhaled meds can drop my lung function and also make me feel more short of breath.. Inhaled Tobi makes me so short of breath sometimes I think I am in an acute exacerbation.... Also Albuteral can make my airway clamp down.. I have much better luck with xopenex.

I understand totally what you are saying about decreasing the drugs and having a higher PFT.. I just don't know if it is the right thing to do, if it is safe, Prevention is worth so much to the CF lungs.. and I would maybe find a happy medium somewhere..

Instead of Pulmozyme how about trying mucyomist.. That one seems to be tolerated pretty well, and some of my CF friends like it so much better then Pulmozyme.. I personally love pulmozyme because it makes things so fluid for me..

also, you don't want to set your child up to not do nebs, I was not dx till I was an adult and it is a pain in the rear to be disciplined....

I stopped my nebs for a while and I usually did feel better being off of them... except for the pulmozyme... so I am not telling you what to do, just wondering with you

Jennifer
 
J

JennifersHope

New member
I know for me certain of the inhaled meds can drop my lung function and also make me feel more short of breath.. Inhaled Tobi makes me so short of breath sometimes I think I am in an acute exacerbation.... Also Albuteral can make my airway clamp down.. I have much better luck with xopenex.

I understand totally what you are saying about decreasing the drugs and having a higher PFT.. I just don't know if it is the right thing to do, if it is safe, Prevention is worth so much to the CF lungs.. and I would maybe find a happy medium somewhere..

Instead of Pulmozyme how about trying mucyomist.. That one seems to be tolerated pretty well, and some of my CF friends like it so much better then Pulmozyme.. I personally love pulmozyme because it makes things so fluid for me..

also, you don't want to set your child up to not do nebs, I was not dx till I was an adult and it is a pain in the rear to be disciplined....

I stopped my nebs for a while and I usually did feel better being off of them... except for the pulmozyme... so I am not telling you what to do, just wondering with you

Jennifer
 
J

JennifersHope

New member
I know for me certain of the inhaled meds can drop my lung function and also make me feel more short of breath.. Inhaled Tobi makes me so short of breath sometimes I think I am in an acute exacerbation.... Also Albuteral can make my airway clamp down.. I have much better luck with xopenex.

I understand totally what you are saying about decreasing the drugs and having a higher PFT.. I just don't know if it is the right thing to do, if it is safe, Prevention is worth so much to the CF lungs.. and I would maybe find a happy medium somewhere..

Instead of Pulmozyme how about trying mucyomist.. That one seems to be tolerated pretty well, and some of my CF friends like it so much better then Pulmozyme.. I personally love pulmozyme because it makes things so fluid for me..

also, you don't want to set your child up to not do nebs, I was not dx till I was an adult and it is a pain in the rear to be disciplined....

I stopped my nebs for a while and I usually did feel better being off of them... except for the pulmozyme... so I am not telling you what to do, just wondering with you

Jennifer
 
J

JennifersHope

New member
I know for me certain of the inhaled meds can drop my lung function and also make me feel more short of breath.. Inhaled Tobi makes me so short of breath sometimes I think I am in an acute exacerbation.... Also Albuteral can make my airway clamp down.. I have much better luck with xopenex.

I understand totally what you are saying about decreasing the drugs and having a higher PFT.. I just don't know if it is the right thing to do, if it is safe, Prevention is worth so much to the CF lungs.. and I would maybe find a happy medium somewhere..

Instead of Pulmozyme how about trying mucyomist.. That one seems to be tolerated pretty well, and some of my CF friends like it so much better then Pulmozyme.. I personally love pulmozyme because it makes things so fluid for me..

also, you don't want to set your child up to not do nebs, I was not dx till I was an adult and it is a pain in the rear to be disciplined....

I stopped my nebs for a while and I usually did feel better being off of them... except for the pulmozyme... so I am not telling you what to do, just wondering with you

Jennifer
 
J

JennifersHope

New member
I know for me certain of the inhaled meds can drop my lung function and also make me feel more short of breath.. Inhaled Tobi makes me so short of breath sometimes I think I am in an acute exacerbation.... Also Albuteral can make my airway clamp down.. I have much better luck with xopenex.
<br />
<br />I understand totally what you are saying about decreasing the drugs and having a higher PFT.. I just don't know if it is the right thing to do, if it is safe, Prevention is worth so much to the CF lungs.. and I would maybe find a happy medium somewhere..
<br />
<br />Instead of Pulmozyme how about trying mucyomist.. That one seems to be tolerated pretty well, and some of my CF friends like it so much better then Pulmozyme.. I personally love pulmozyme because it makes things so fluid for me..
<br />
<br />also, you don't want to set your child up to not do nebs, I was not dx till I was an adult and it is a pain in the rear to be disciplined....
<br />
<br />I stopped my nebs for a while and I usually did feel better being off of them... except for the pulmozyme... so I am not telling you what to do, just wondering with you
<br />
<br />Jennifer
 
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