Cleaning out nebulizer cups

J

just1more

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

I also was wondering how some of you might have gotten your eFlows. I have researched it, and it seems pretty neat. Is it expensive? Just curious. Thanks

</end quote></div>

Some on here got it via clinical trials, but we got ours via our CF center. We actually don't own or pay for it. There are only a couple of pharmacies that are allowed to dispense it; and in our case by agreeing to buy our compounded tobra from them (you can't use normal TOBI in a eflow) they provide us the eflow for free as long as we use them.

I would ask your CF center next time you talk to them, they should be able to hook you up and if you are on TOBI they will have to prescribe the eflow version.

Good Luck!
 
J

just1more

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

I also was wondering how some of you might have gotten your eFlows. I have researched it, and it seems pretty neat. Is it expensive? Just curious. Thanks

</end quote></div>

Some on here got it via clinical trials, but we got ours via our CF center. We actually don't own or pay for it. There are only a couple of pharmacies that are allowed to dispense it; and in our case by agreeing to buy our compounded tobra from them (you can't use normal TOBI in a eflow) they provide us the eflow for free as long as we use them.

I would ask your CF center next time you talk to them, they should be able to hook you up and if you are on TOBI they will have to prescribe the eflow version.

Good Luck!
 
J

just1more

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

I also was wondering how some of you might have gotten your eFlows. I have researched it, and it seems pretty neat. Is it expensive? Just curious. Thanks

</end quote></div>

Some on here got it via clinical trials, but we got ours via our CF center. We actually don't own or pay for it. There are only a couple of pharmacies that are allowed to dispense it; and in our case by agreeing to buy our compounded tobra from them (you can't use normal TOBI in a eflow) they provide us the eflow for free as long as we use them.

I would ask your CF center next time you talk to them, they should be able to hook you up and if you are on TOBI they will have to prescribe the eflow version.

Good Luck!
 
J

just1more

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

I also was wondering how some of you might have gotten your eFlows. I have researched it, and it seems pretty neat. Is it expensive? Just curious. Thanks

</end quote>

Some on here got it via clinical trials, but we got ours via our CF center. We actually don't own or pay for it. There are only a couple of pharmacies that are allowed to dispense it; and in our case by agreeing to buy our compounded tobra from them (you can't use normal TOBI in a eflow) they provide us the eflow for free as long as we use them.

I would ask your CF center next time you talk to them, they should be able to hook you up and if you are on TOBI they will have to prescribe the eflow version.

Good Luck!
 
J

just1more

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>marisalynn</b></i>
<br />
<br />I also was wondering how some of you might have gotten your eFlows. I have researched it, and it seems pretty neat. Is it expensive? Just curious. Thanks
<br />
<br /></end quote>
<br />
<br />Some on here got it via clinical trials, but we got ours via our CF center. We actually don't own or pay for it. There are only a couple of pharmacies that are allowed to dispense it; and in our case by agreeing to buy our compounded tobra from them (you can't use normal TOBI in a eflow) they provide us the eflow for free as long as we use them.
<br />
<br />I would ask your CF center next time you talk to them, they should be able to hook you up and if you are on TOBI they will have to prescribe the eflow version.
<br />
<br />Good Luck!
 
H

hmw

New member
This occurs to me too...
<div class="FTQUOTE"><begin quote>I remember doing the soapy water, alcohol, or vinegar and those all left a disgusting taste in the plastic.</end quote></div>
......

<div class="FTQUOTE"><begin quote>got lucky and when I was participating in a clinical trial with the eflow they gave me an amazing way to clean my stuff. Anyways, they gave me a sterilizer that is used for breast pumps and bottles to use. It takes about two minutes and is so easy to use. I was really bad about cleaning my stuff regularly, but now that it's so easy to use I do it everyday. You put a cup of water in, put all of your pieces on a rack, and just click the button to start. I highly recommend this route!</end quote></div>
Do you have a steam sterilizer? I do think that they can sufficiently get rid of germs (we have the Avent IQ), but you still are supposed to be washing the nebs first; putting them straight into the sterilizer & steaming with water alone after use isn't enough to get them clean; medication residue and any saliva or sputum that gets on them needs to be washed out first. (Even according to the sterilizer's directions, you are supposed to wash bottles, etc first in warm soapy water prior to putting in the sterilizer.) Keeping the neb cups free of med residue helps them last as long as possible, too.

I do rinse the stuff well to ensure the taste is gone. Experimenting with various dish soaps might help with this, too...
 
H

hmw

New member
This occurs to me too...
<div class="FTQUOTE"><begin quote>I remember doing the soapy water, alcohol, or vinegar and those all left a disgusting taste in the plastic.</end quote></div>
......

<div class="FTQUOTE"><begin quote>got lucky and when I was participating in a clinical trial with the eflow they gave me an amazing way to clean my stuff. Anyways, they gave me a sterilizer that is used for breast pumps and bottles to use. It takes about two minutes and is so easy to use. I was really bad about cleaning my stuff regularly, but now that it's so easy to use I do it everyday. You put a cup of water in, put all of your pieces on a rack, and just click the button to start. I highly recommend this route!</end quote></div>
Do you have a steam sterilizer? I do think that they can sufficiently get rid of germs (we have the Avent IQ), but you still are supposed to be washing the nebs first; putting them straight into the sterilizer & steaming with water alone after use isn't enough to get them clean; medication residue and any saliva or sputum that gets on them needs to be washed out first. (Even according to the sterilizer's directions, you are supposed to wash bottles, etc first in warm soapy water prior to putting in the sterilizer.) Keeping the neb cups free of med residue helps them last as long as possible, too.

I do rinse the stuff well to ensure the taste is gone. Experimenting with various dish soaps might help with this, too...
 
H

hmw

New member
This occurs to me too...
<div class="FTQUOTE"><begin quote>I remember doing the soapy water, alcohol, or vinegar and those all left a disgusting taste in the plastic.</end quote></div>
......

<div class="FTQUOTE"><begin quote>got lucky and when I was participating in a clinical trial with the eflow they gave me an amazing way to clean my stuff. Anyways, they gave me a sterilizer that is used for breast pumps and bottles to use. It takes about two minutes and is so easy to use. I was really bad about cleaning my stuff regularly, but now that it's so easy to use I do it everyday. You put a cup of water in, put all of your pieces on a rack, and just click the button to start. I highly recommend this route!</end quote></div>
Do you have a steam sterilizer? I do think that they can sufficiently get rid of germs (we have the Avent IQ), but you still are supposed to be washing the nebs first; putting them straight into the sterilizer & steaming with water alone after use isn't enough to get them clean; medication residue and any saliva or sputum that gets on them needs to be washed out first. (Even according to the sterilizer's directions, you are supposed to wash bottles, etc first in warm soapy water prior to putting in the sterilizer.) Keeping the neb cups free of med residue helps them last as long as possible, too.

I do rinse the stuff well to ensure the taste is gone. Experimenting with various dish soaps might help with this, too...
 
H

hmw

New member
This occurs to me too...
<div class="FTQUOTE"><begin quote>I remember doing the soapy water, alcohol, or vinegar and those all left a disgusting taste in the plastic.</end quote>
......

<div class="FTQUOTE"><begin quote>got lucky and when I was participating in a clinical trial with the eflow they gave me an amazing way to clean my stuff. Anyways, they gave me a sterilizer that is used for breast pumps and bottles to use. It takes about two minutes and is so easy to use. I was really bad about cleaning my stuff regularly, but now that it's so easy to use I do it everyday. You put a cup of water in, put all of your pieces on a rack, and just click the button to start. I highly recommend this route!</end quote>
Do you have a steam sterilizer? I do think that they can sufficiently get rid of germs (we have the Avent IQ), but you still are supposed to be washing the nebs first; putting them straight into the sterilizer & steaming with water alone after use isn't enough to get them clean; medication residue and any saliva or sputum that gets on them needs to be washed out first. (Even according to the sterilizer's directions, you are supposed to wash bottles, etc first in warm soapy water prior to putting in the sterilizer.) Keeping the neb cups free of med residue helps them last as long as possible, too.

I do rinse the stuff well to ensure the taste is gone. Experimenting with various dish soaps might help with this, too...
 
H

hmw

New member
This occurs to me too...
<br /><div class="FTQUOTE"><begin quote>I remember doing the soapy water, alcohol, or vinegar and those all left a disgusting taste in the plastic.</end quote>
<br />......
<br />
<br /><div class="FTQUOTE"><begin quote>got lucky and when I was participating in a clinical trial with the eflow they gave me an amazing way to clean my stuff. Anyways, they gave me a sterilizer that is used for breast pumps and bottles to use. It takes about two minutes and is so easy to use. I was really bad about cleaning my stuff regularly, but now that it's so easy to use I do it everyday. You put a cup of water in, put all of your pieces on a rack, and just click the button to start. I highly recommend this route!</end quote>
<br />Do you have a steam sterilizer? I do think that they can sufficiently get rid of germs (we have the Avent IQ), but you still are supposed to be washing the nebs first; putting them straight into the sterilizer & steaming with water alone after use isn't enough to get them clean; medication residue and any saliva or sputum that gets on them needs to be washed out first. (Even according to the sterilizer's directions, you are supposed to wash bottles, etc first in warm soapy water prior to putting in the sterilizer.) Keeping the neb cups free of med residue helps them last as long as possible, too.
<br />
<br />I do rinse the stuff well to ensure the taste is gone. Experimenting with various dish soaps might help with this, too...
 
S

saveferris2009

New member
1. Disinfecting nebs also prevents molds, etc. in addition to bacteria. ask people with ABPA - it's NOT fun.

The other issue is how bacteria grow and interact with each other outside of the body. We all know (or should) that bacteria can mutate and become more virulent by sharing genes - who wants to give them an opportunity to do so not only in our lungs but also outside our body? PA survives on surfaces for 3+ days...

If you're going to spend 2+ hrs every day doing your treatments properly, it's a huge waste of time in my opinion to use dirty nebs where you could be introducing new bacteria or adding to the bacterial count (remember: you may have PA in your lower right lobe, but upon nebbbing with a PA-ridden neb cup, you introduce PA to your upper left lobe... congrats! you now have MORE lung area in which permanent lung damange can occur).


2. Details on how to get an eFLow are on the eFlow section of my blog. You don't have to be in a clinical trial to get one.
 
S

saveferris2009

New member
1. Disinfecting nebs also prevents molds, etc. in addition to bacteria. ask people with ABPA - it's NOT fun.

The other issue is how bacteria grow and interact with each other outside of the body. We all know (or should) that bacteria can mutate and become more virulent by sharing genes - who wants to give them an opportunity to do so not only in our lungs but also outside our body? PA survives on surfaces for 3+ days...

If you're going to spend 2+ hrs every day doing your treatments properly, it's a huge waste of time in my opinion to use dirty nebs where you could be introducing new bacteria or adding to the bacterial count (remember: you may have PA in your lower right lobe, but upon nebbbing with a PA-ridden neb cup, you introduce PA to your upper left lobe... congrats! you now have MORE lung area in which permanent lung damange can occur).


2. Details on how to get an eFLow are on the eFlow section of my blog. You don't have to be in a clinical trial to get one.
 
S

saveferris2009

New member
1. Disinfecting nebs also prevents molds, etc. in addition to bacteria. ask people with ABPA - it's NOT fun.

The other issue is how bacteria grow and interact with each other outside of the body. We all know (or should) that bacteria can mutate and become more virulent by sharing genes - who wants to give them an opportunity to do so not only in our lungs but also outside our body? PA survives on surfaces for 3+ days...

If you're going to spend 2+ hrs every day doing your treatments properly, it's a huge waste of time in my opinion to use dirty nebs where you could be introducing new bacteria or adding to the bacterial count (remember: you may have PA in your lower right lobe, but upon nebbbing with a PA-ridden neb cup, you introduce PA to your upper left lobe... congrats! you now have MORE lung area in which permanent lung damange can occur).


2. Details on how to get an eFLow are on the eFlow section of my blog. You don't have to be in a clinical trial to get one.
 
S

saveferris2009

New member
1. Disinfecting nebs also prevents molds, etc. in addition to bacteria. ask people with ABPA - it's NOT fun.

The other issue is how bacteria grow and interact with each other outside of the body. We all know (or should) that bacteria can mutate and become more virulent by sharing genes - who wants to give them an opportunity to do so not only in our lungs but also outside our body? PA survives on surfaces for 3+ days...

If you're going to spend 2+ hrs every day doing your treatments properly, it's a huge waste of time in my opinion to use dirty nebs where you could be introducing new bacteria or adding to the bacterial count (remember: you may have PA in your lower right lobe, but upon nebbbing with a PA-ridden neb cup, you introduce PA to your upper left lobe... congrats! you now have MORE lung area in which permanent lung damange can occur).


2. Details on how to get an eFLow are on the eFlow section of my blog. You don't have to be in a clinical trial to get one.
 
S

saveferris2009

New member
1. Disinfecting nebs also prevents molds, etc. in addition to bacteria. ask people with ABPA - it's NOT fun.
<br />
<br />The other issue is how bacteria grow and interact with each other outside of the body. We all know (or should) that bacteria can mutate and become more virulent by sharing genes - who wants to give them an opportunity to do so not only in our lungs but also outside our body? PA survives on surfaces for 3+ days...
<br />
<br />If you're going to spend 2+ hrs every day doing your treatments properly, it's a huge waste of time in my opinion to use dirty nebs where you could be introducing new bacteria or adding to the bacterial count (remember: you may have PA in your lower right lobe, but upon nebbbing with a PA-ridden neb cup, you introduce PA to your upper left lobe... congrats! you now have MORE lung area in which permanent lung damange can occur).
<br />
<br />
<br />2. Details on how to get an eFLow are on the eFlow section of my blog. You don't have to be in a clinical trial to get one.
 
J

jdubbs

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>just1more</b></i>

Ok, I'm feeling onery today so I'm going to play devils advocate (and yes we sterilze our equipment including our e-flow before you ask):



Has anyone ever seen a confirmed, or "PHYSICAN-suspected" case of infection in a CF'r caused by a non-sterile nebulizer cup at home?



Just curious what the real risk is. Given that the only germs on a neb cup sitting on your counter came from your lungs or from your home; thus I would assume that you most likely already have them......so what is the true risk?</end quote></div>

Yeah, I wonder this too. I think it's a precaution, which can only serve to help, but probably 999 times out of 1000 isn't necessary. Although just one nasty case of MRSA, or whatever, could be extremely dangerous. I think I just convinced myself to sterilize my nebs more frequently.
 
J

jdubbs

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>just1more</b></i>

Ok, I'm feeling onery today so I'm going to play devils advocate (and yes we sterilze our equipment including our e-flow before you ask):



Has anyone ever seen a confirmed, or "PHYSICAN-suspected" case of infection in a CF'r caused by a non-sterile nebulizer cup at home?



Just curious what the real risk is. Given that the only germs on a neb cup sitting on your counter came from your lungs or from your home; thus I would assume that you most likely already have them......so what is the true risk?</end quote></div>

Yeah, I wonder this too. I think it's a precaution, which can only serve to help, but probably 999 times out of 1000 isn't necessary. Although just one nasty case of MRSA, or whatever, could be extremely dangerous. I think I just convinced myself to sterilize my nebs more frequently.
 
J

jdubbs

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>just1more</b></i>

Ok, I'm feeling onery today so I'm going to play devils advocate (and yes we sterilze our equipment including our e-flow before you ask):



Has anyone ever seen a confirmed, or "PHYSICAN-suspected" case of infection in a CF'r caused by a non-sterile nebulizer cup at home?



Just curious what the real risk is. Given that the only germs on a neb cup sitting on your counter came from your lungs or from your home; thus I would assume that you most likely already have them......so what is the true risk?</end quote></div>

Yeah, I wonder this too. I think it's a precaution, which can only serve to help, but probably 999 times out of 1000 isn't necessary. Although just one nasty case of MRSA, or whatever, could be extremely dangerous. I think I just convinced myself to sterilize my nebs more frequently.
 
J

jdubbs

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>just1more</b></i>

Ok, I'm feeling onery today so I'm going to play devils advocate (and yes we sterilze our equipment including our e-flow before you ask):



Has anyone ever seen a confirmed, or "PHYSICAN-suspected" case of infection in a CF'r caused by a non-sterile nebulizer cup at home?



Just curious what the real risk is. Given that the only germs on a neb cup sitting on your counter came from your lungs or from your home; thus I would assume that you most likely already have them......so what is the true risk?</end quote>

Yeah, I wonder this too. I think it's a precaution, which can only serve to help, but probably 999 times out of 1000 isn't necessary. Although just one nasty case of MRSA, or whatever, could be extremely dangerous. I think I just convinced myself to sterilize my nebs more frequently.
 
J

jdubbs

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>just1more</b></i>
<br />
<br />Ok, I'm feeling onery today so I'm going to play devils advocate (and yes we sterilze our equipment including our e-flow before you ask):
<br />
<br />
<br />
<br />Has anyone ever seen a confirmed, or "PHYSICAN-suspected" case of infection in a CF'r caused by a non-sterile nebulizer cup at home?
<br />
<br />
<br />
<br />Just curious what the real risk is. Given that the only germs on a neb cup sitting on your counter came from your lungs or from your home; thus I would assume that you most likely already have them......so what is the true risk?</end quote>
<br />
<br />Yeah, I wonder this too. I think it's a precaution, which can only serve to help, but probably 999 times out of 1000 isn't necessary. Although just one nasty case of MRSA, or whatever, could be extremely dangerous. I think I just convinced myself to sterilize my nebs more frequently.
 
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