NoExcuses is right....we mispoke, it is Tobra they mix for e-flow. Treatment for CF is always a frontier and patients have tried many things over the years that have not been proven yet; unfortunately, that is the position we are put in because there is no cure. That being said, I would not compare using the e-flow with mixed abx to an abx like azithro that has been on the market for years and years or NAK which does not even require a prescription. I will be open with you guys and tell you that my fear may be unfounded; but, my concern lies more with the effect that the HS and pulmozyme has on the smallest air passages because it goes so much deeper into your lungs. That concern has NEVER been expressed to me and those are my OWN thoughts. It is just that HS is so irritating to some people and I am concerned about how it may irritate the smallest air passages. That is really my concern with the abx as well. It may be unfounded; but, I tried it for a few days and then thought better of it. I am not really too concerned about any toxic levels, though that seems to be the main concern for most docs. I guess an easier way to put it would be to say that I am concerned that it will leave me feeling tight and that my smaller airways will get pissed off at me<img src="i/expressions/face-icon-small-smile.gif" border="0">
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?get insurance to pay 4 an eflow?
- Thread starter Scarlett81
- Start date
NoExcuses is right....we mispoke, it is Tobra they mix for e-flow. Treatment for CF is always a frontier and patients have tried many things over the years that have not been proven yet; unfortunately, that is the position we are put in because there is no cure. That being said, I would not compare using the e-flow with mixed abx to an abx like azithro that has been on the market for years and years or NAK which does not even require a prescription. I will be open with you guys and tell you that my fear may be unfounded; but, my concern lies more with the effect that the HS and pulmozyme has on the smallest air passages because it goes so much deeper into your lungs. That concern has NEVER been expressed to me and those are my OWN thoughts. It is just that HS is so irritating to some people and I am concerned about how it may irritate the smallest air passages. That is really my concern with the abx as well. It may be unfounded; but, I tried it for a few days and then thought better of it. I am not really too concerned about any toxic levels, though that seems to be the main concern for most docs. I guess an easier way to put it would be to say that I am concerned that it will leave me feeling tight and that my smaller airways will get pissed off at me<img src="i/expressions/face-icon-small-smile.gif" border="0">
NoExcuses is right....we mispoke, it is Tobra they mix for e-flow. Treatment for CF is always a frontier and patients have tried many things over the years that have not been proven yet; unfortunately, that is the position we are put in because there is no cure. That being said, I would not compare using the e-flow with mixed abx to an abx like azithro that has been on the market for years and years or NAK which does not even require a prescription. I will be open with you guys and tell you that my fear may be unfounded; but, my concern lies more with the effect that the HS and pulmozyme has on the smallest air passages because it goes so much deeper into your lungs. That concern has NEVER been expressed to me and those are my OWN thoughts. It is just that HS is so irritating to some people and I am concerned about how it may irritate the smallest air passages. That is really my concern with the abx as well. It may be unfounded; but, I tried it for a few days and then thought better of it. I am not really too concerned about any toxic levels, though that seems to be the main concern for most docs. I guess an easier way to put it would be to say that I am concerned that it will leave me feeling tight and that my smaller airways will get pissed off at me<img src="i/expressions/face-icon-small-smile.gif" border="0">
NoExcuses is right....we mispoke, it is Tobra they mix for e-flow. Treatment for CF is always a frontier and patients have tried many things over the years that have not been proven yet; unfortunately, that is the position we are put in because there is no cure. That being said, I would not compare using the e-flow with mixed abx to an abx like azithro that has been on the market for years and years or NAK which does not even require a prescription. I will be open with you guys and tell you that my fear may be unfounded; but, my concern lies more with the effect that the HS and pulmozyme has on the smallest air passages because it goes so much deeper into your lungs. That concern has NEVER been expressed to me and those are my OWN thoughts. It is just that HS is so irritating to some people and I am concerned about how it may irritate the smallest air passages. That is really my concern with the abx as well. It may be unfounded; but, I tried it for a few days and then thought better of it. I am not really too concerned about any toxic levels, though that seems to be the main concern for most docs. I guess an easier way to put it would be to say that I am concerned that it will leave me feeling tight and that my smaller airways will get pissed off at me<img src="i/expressions/face-icon-small-smile.gif" border="0">
NoExcuses is right....we mispoke, it is Tobra they mix for e-flow. Treatment for CF is always a frontier and patients have tried many things over the years that have not been proven yet; unfortunately, that is the position we are put in because there is no cure. That being said, I would not compare using the e-flow with mixed abx to an abx like azithro that has been on the market for years and years or NAK which does not even require a prescription. I will be open with you guys and tell you that my fear may be unfounded; but, my concern lies more with the effect that the HS and pulmozyme has on the smallest air passages because it goes so much deeper into your lungs. That concern has NEVER been expressed to me and those are my OWN thoughts. It is just that HS is so irritating to some people and I am concerned about how it may irritate the smallest air passages. That is really my concern with the abx as well. It may be unfounded; but, I tried it for a few days and then thought better of it. I am not really too concerned about any toxic levels, though that seems to be the main concern for most docs. I guess an easier way to put it would be to say that I am concerned that it will leave me feeling tight and that my smaller airways will get pissed off at me<img src="i/expressions/face-icon-small-smile.gif" border="0">
mom2lillian
New member
Christian-What your center is expressing too few studies of appropriate tobra levels, the pre-formulation worries etc is what my center told me was the basic consensus of most physicians at the round table sessions for the most recent conference. I think the statement that it is responsible for deaths is a mis-statment, misudnerstandig what have you.
If you use tobra and eflow then cf source or source center or whatver its called will bend over backwards for you but if you arent going to then the cost initially while alot is doable but part maintenance and replacement also has to be considered. I was also considering purchasing it.
Being a proactive adherent and busy patient they were going to let me start usign it for everythign but tobra they wanted me to stay on TOBI and that keeps me from getting the cost of the e-flow covered. I am a bit less cautious on things so I was willing to try out the tobra for a few months and see how thigns go but I am ok this way too. Basically all the drugs up and coming are being done with the e-flow and since a number of them are 'close'. Our center decided to wait on that and then start using the e-flow. Just a note that I dont know what your center was thinkig you cant use a ultrasonic nebulizer for pulmozyme or tobra last I knew. I have also had a non-ultrasonic portable omron and it was a POS that I hated also. I have had the pari-trek which I loved and now have the trek-s. I can do the treatments on trek-s in almost the same amount of time as my new pro-neb ultra 2. You also have to keep in mind portable nebs are not approved for tobi or pulmozyme but from what I can read/feel/tell I get nearly the same from the portable trek so if it is a one off situaiton I am not concerned and I do my pulmozyme on it every otehr month in the car when on TOBI.
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.
If you use tobra and eflow then cf source or source center or whatver its called will bend over backwards for you but if you arent going to then the cost initially while alot is doable but part maintenance and replacement also has to be considered. I was also considering purchasing it.
Being a proactive adherent and busy patient they were going to let me start usign it for everythign but tobra they wanted me to stay on TOBI and that keeps me from getting the cost of the e-flow covered. I am a bit less cautious on things so I was willing to try out the tobra for a few months and see how thigns go but I am ok this way too. Basically all the drugs up and coming are being done with the e-flow and since a number of them are 'close'. Our center decided to wait on that and then start using the e-flow. Just a note that I dont know what your center was thinkig you cant use a ultrasonic nebulizer for pulmozyme or tobra last I knew. I have also had a non-ultrasonic portable omron and it was a POS that I hated also. I have had the pari-trek which I loved and now have the trek-s. I can do the treatments on trek-s in almost the same amount of time as my new pro-neb ultra 2. You also have to keep in mind portable nebs are not approved for tobi or pulmozyme but from what I can read/feel/tell I get nearly the same from the portable trek so if it is a one off situaiton I am not concerned and I do my pulmozyme on it every otehr month in the car when on TOBI.
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.
mom2lillian
New member
Christian-What your center is expressing too few studies of appropriate tobra levels, the pre-formulation worries etc is what my center told me was the basic consensus of most physicians at the round table sessions for the most recent conference. I think the statement that it is responsible for deaths is a mis-statment, misudnerstandig what have you.
If you use tobra and eflow then cf source or source center or whatver its called will bend over backwards for you but if you arent going to then the cost initially while alot is doable but part maintenance and replacement also has to be considered. I was also considering purchasing it.
Being a proactive adherent and busy patient they were going to let me start usign it for everythign but tobra they wanted me to stay on TOBI and that keeps me from getting the cost of the e-flow covered. I am a bit less cautious on things so I was willing to try out the tobra for a few months and see how thigns go but I am ok this way too. Basically all the drugs up and coming are being done with the e-flow and since a number of them are 'close'. Our center decided to wait on that and then start using the e-flow. Just a note that I dont know what your center was thinkig you cant use a ultrasonic nebulizer for pulmozyme or tobra last I knew. I have also had a non-ultrasonic portable omron and it was a POS that I hated also. I have had the pari-trek which I loved and now have the trek-s. I can do the treatments on trek-s in almost the same amount of time as my new pro-neb ultra 2. You also have to keep in mind portable nebs are not approved for tobi or pulmozyme but from what I can read/feel/tell I get nearly the same from the portable trek so if it is a one off situaiton I am not concerned and I do my pulmozyme on it every otehr month in the car when on TOBI.
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.
If you use tobra and eflow then cf source or source center or whatver its called will bend over backwards for you but if you arent going to then the cost initially while alot is doable but part maintenance and replacement also has to be considered. I was also considering purchasing it.
Being a proactive adherent and busy patient they were going to let me start usign it for everythign but tobra they wanted me to stay on TOBI and that keeps me from getting the cost of the e-flow covered. I am a bit less cautious on things so I was willing to try out the tobra for a few months and see how thigns go but I am ok this way too. Basically all the drugs up and coming are being done with the e-flow and since a number of them are 'close'. Our center decided to wait on that and then start using the e-flow. Just a note that I dont know what your center was thinkig you cant use a ultrasonic nebulizer for pulmozyme or tobra last I knew. I have also had a non-ultrasonic portable omron and it was a POS that I hated also. I have had the pari-trek which I loved and now have the trek-s. I can do the treatments on trek-s in almost the same amount of time as my new pro-neb ultra 2. You also have to keep in mind portable nebs are not approved for tobi or pulmozyme but from what I can read/feel/tell I get nearly the same from the portable trek so if it is a one off situaiton I am not concerned and I do my pulmozyme on it every otehr month in the car when on TOBI.
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.
mom2lillian
New member
Christian-What your center is expressing too few studies of appropriate tobra levels, the pre-formulation worries etc is what my center told me was the basic consensus of most physicians at the round table sessions for the most recent conference. I think the statement that it is responsible for deaths is a mis-statment, misudnerstandig what have you.
If you use tobra and eflow then cf source or source center or whatver its called will bend over backwards for you but if you arent going to then the cost initially while alot is doable but part maintenance and replacement also has to be considered. I was also considering purchasing it.
Being a proactive adherent and busy patient they were going to let me start usign it for everythign but tobra they wanted me to stay on TOBI and that keeps me from getting the cost of the e-flow covered. I am a bit less cautious on things so I was willing to try out the tobra for a few months and see how thigns go but I am ok this way too. Basically all the drugs up and coming are being done with the e-flow and since a number of them are 'close'. Our center decided to wait on that and then start using the e-flow. Just a note that I dont know what your center was thinkig you cant use a ultrasonic nebulizer for pulmozyme or tobra last I knew. I have also had a non-ultrasonic portable omron and it was a POS that I hated also. I have had the pari-trek which I loved and now have the trek-s. I can do the treatments on trek-s in almost the same amount of time as my new pro-neb ultra 2. You also have to keep in mind portable nebs are not approved for tobi or pulmozyme but from what I can read/feel/tell I get nearly the same from the portable trek so if it is a one off situaiton I am not concerned and I do my pulmozyme on it every otehr month in the car when on TOBI.
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.
If you use tobra and eflow then cf source or source center or whatver its called will bend over backwards for you but if you arent going to then the cost initially while alot is doable but part maintenance and replacement also has to be considered. I was also considering purchasing it.
Being a proactive adherent and busy patient they were going to let me start usign it for everythign but tobra they wanted me to stay on TOBI and that keeps me from getting the cost of the e-flow covered. I am a bit less cautious on things so I was willing to try out the tobra for a few months and see how thigns go but I am ok this way too. Basically all the drugs up and coming are being done with the e-flow and since a number of them are 'close'. Our center decided to wait on that and then start using the e-flow. Just a note that I dont know what your center was thinkig you cant use a ultrasonic nebulizer for pulmozyme or tobra last I knew. I have also had a non-ultrasonic portable omron and it was a POS that I hated also. I have had the pari-trek which I loved and now have the trek-s. I can do the treatments on trek-s in almost the same amount of time as my new pro-neb ultra 2. You also have to keep in mind portable nebs are not approved for tobi or pulmozyme but from what I can read/feel/tell I get nearly the same from the portable trek so if it is a one off situaiton I am not concerned and I do my pulmozyme on it every otehr month in the car when on TOBI.
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.
mom2lillian
New member
Christian-What your center is expressing too few studies of appropriate tobra levels, the pre-formulation worries etc is what my center told me was the basic consensus of most physicians at the round table sessions for the most recent conference. I think the statement that it is responsible for deaths is a mis-statment, misudnerstandig what have you.
If you use tobra and eflow then cf source or source center or whatver its called will bend over backwards for you but if you arent going to then the cost initially while alot is doable but part maintenance and replacement also has to be considered. I was also considering purchasing it.
Being a proactive adherent and busy patient they were going to let me start usign it for everythign but tobra they wanted me to stay on TOBI and that keeps me from getting the cost of the e-flow covered. I am a bit less cautious on things so I was willing to try out the tobra for a few months and see how thigns go but I am ok this way too. Basically all the drugs up and coming are being done with the e-flow and since a number of them are 'close'. Our center decided to wait on that and then start using the e-flow. Just a note that I dont know what your center was thinkig you cant use a ultrasonic nebulizer for pulmozyme or tobra last I knew. I have also had a non-ultrasonic portable omron and it was a POS that I hated also. I have had the pari-trek which I loved and now have the trek-s. I can do the treatments on trek-s in almost the same amount of time as my new pro-neb ultra 2. You also have to keep in mind portable nebs are not approved for tobi or pulmozyme but from what I can read/feel/tell I get nearly the same from the portable trek so if it is a one off situaiton I am not concerned and I do my pulmozyme on it every otehr month in the car when on TOBI.
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.
If you use tobra and eflow then cf source or source center or whatver its called will bend over backwards for you but if you arent going to then the cost initially while alot is doable but part maintenance and replacement also has to be considered. I was also considering purchasing it.
Being a proactive adherent and busy patient they were going to let me start usign it for everythign but tobra they wanted me to stay on TOBI and that keeps me from getting the cost of the e-flow covered. I am a bit less cautious on things so I was willing to try out the tobra for a few months and see how thigns go but I am ok this way too. Basically all the drugs up and coming are being done with the e-flow and since a number of them are 'close'. Our center decided to wait on that and then start using the e-flow. Just a note that I dont know what your center was thinkig you cant use a ultrasonic nebulizer for pulmozyme or tobra last I knew. I have also had a non-ultrasonic portable omron and it was a POS that I hated also. I have had the pari-trek which I loved and now have the trek-s. I can do the treatments on trek-s in almost the same amount of time as my new pro-neb ultra 2. You also have to keep in mind portable nebs are not approved for tobi or pulmozyme but from what I can read/feel/tell I get nearly the same from the portable trek so if it is a one off situaiton I am not concerned and I do my pulmozyme on it every otehr month in the car when on TOBI.
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.
mom2lillian
New member
Christian-What your center is expressing too few studies of appropriate tobra levels, the pre-formulation worries etc is what my center told me was the basic consensus of most physicians at the round table sessions for the most recent conference. I think the statement that it is responsible for deaths is a mis-statment, misudnerstandig what have you.
<br />
<br />If you use tobra and eflow then cf source or source center or whatver its called will bend over backwards for you but if you arent going to then the cost initially while alot is doable but part maintenance and replacement also has to be considered. I was also considering purchasing it.
<br />
<br />Being a proactive adherent and busy patient they were going to let me start usign it for everythign but tobra they wanted me to stay on TOBI and that keeps me from getting the cost of the e-flow covered. I am a bit less cautious on things so I was willing to try out the tobra for a few months and see how thigns go but I am ok this way too. Basically all the drugs up and coming are being done with the e-flow and since a number of them are 'close'. Our center decided to wait on that and then start using the e-flow. Just a note that I dont know what your center was thinkig you cant use a ultrasonic nebulizer for pulmozyme or tobra last I knew. I have also had a non-ultrasonic portable omron and it was a POS that I hated also. I have had the pari-trek which I loved and now have the trek-s. I can do the treatments on trek-s in almost the same amount of time as my new pro-neb ultra 2. You also have to keep in mind portable nebs are not approved for tobi or pulmozyme but from what I can read/feel/tell I get nearly the same from the portable trek so if it is a one off situaiton I am not concerned and I do my pulmozyme on it every otehr month in the car when on TOBI.
<br />
<br />I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.
<br />
<br />
<br />
<br />If you use tobra and eflow then cf source or source center or whatver its called will bend over backwards for you but if you arent going to then the cost initially while alot is doable but part maintenance and replacement also has to be considered. I was also considering purchasing it.
<br />
<br />Being a proactive adherent and busy patient they were going to let me start usign it for everythign but tobra they wanted me to stay on TOBI and that keeps me from getting the cost of the e-flow covered. I am a bit less cautious on things so I was willing to try out the tobra for a few months and see how thigns go but I am ok this way too. Basically all the drugs up and coming are being done with the e-flow and since a number of them are 'close'. Our center decided to wait on that and then start using the e-flow. Just a note that I dont know what your center was thinkig you cant use a ultrasonic nebulizer for pulmozyme or tobra last I knew. I have also had a non-ultrasonic portable omron and it was a POS that I hated also. I have had the pari-trek which I loved and now have the trek-s. I can do the treatments on trek-s in almost the same amount of time as my new pro-neb ultra 2. You also have to keep in mind portable nebs are not approved for tobi or pulmozyme but from what I can read/feel/tell I get nearly the same from the portable trek so if it is a one off situaiton I am not concerned and I do my pulmozyme on it every otehr month in the car when on TOBI.
<br />
<br />I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.
<br />
<br />
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.</end quote></div>
Be careful - as I'm sure you already know, the Trek cannot be used with Pulmozyme or TOBI/tobramycin.
The compressor simply doesn't give an adequate respirable does to be effective.
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.</end quote></div>
Be careful - as I'm sure you already know, the Trek cannot be used with Pulmozyme or TOBI/tobramycin.
The compressor simply doesn't give an adequate respirable does to be effective.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.</end quote></div>
Be careful - as I'm sure you already know, the Trek cannot be used with Pulmozyme or TOBI/tobramycin.
The compressor simply doesn't give an adequate respirable does to be effective.
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.</end quote></div>
Be careful - as I'm sure you already know, the Trek cannot be used with Pulmozyme or TOBI/tobramycin.
The compressor simply doesn't give an adequate respirable does to be effective.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.</end quote></div>
Be careful - as I'm sure you already know, the Trek cannot be used with Pulmozyme or TOBI/tobramycin.
The compressor simply doesn't give an adequate respirable does to be effective.
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.</end quote></div>
Be careful - as I'm sure you already know, the Trek cannot be used with Pulmozyme or TOBI/tobramycin.
The compressor simply doesn't give an adequate respirable does to be effective.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.</end quote>
Be careful - as I'm sure you already know, the Trek cannot be used with Pulmozyme or TOBI/tobramycin.
The compressor simply doesn't give an adequate respirable does to be effective.
I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.</end quote>
Be careful - as I'm sure you already know, the Trek cannot be used with Pulmozyme or TOBI/tobramycin.
The compressor simply doesn't give an adequate respirable does to be effective.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>
<br />
<br />
<br />
<br />
<br />I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.</end quote>
<br />
<br />Be careful - as I'm sure you already know, the Trek cannot be used with Pulmozyme or TOBI/tobramycin.
<br />
<br />The compressor simply doesn't give an adequate respirable does to be effective.
<br />
<br />
<br />
<br />
<br />I dont know if I have been of any help but if you are interested in trying out a pari trek I think I have one I was going to sell on ebay, let me kknow.</end quote>
<br />
<br />Be careful - as I'm sure you already know, the Trek cannot be used with Pulmozyme or TOBI/tobramycin.
<br />
<br />The compressor simply doesn't give an adequate respirable does to be effective.