Scarlett81
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updated above, please read!
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?get insurance to pay 4 an eflow?
- Thread starter Scarlett81
- Start date
Scarlett81
New member
updated above, please read!
Scarlett81
New member
updated above, please read!
Scarlett81
New member
updated above, please read!
Scarlett81
New member
updated above, please read!
blondelawyer
New member
We had an issue with getting Tobi to use in the eflow, but our doc does let my husband use colistin in it. The issue with the death--as far as I know--was an issue with premixed colistin, not the eFlow. Now patients mix their own colistinmethate.
There is so much misinformation out there about the eFlow. And yes, there aren't a lot of studies on it yet, and there are concerns about dosing, etc., BUT it is a huge time saver and really enhances my husband's quality of life--so we are all for it!
Check out NoExcuses blog for lots of info on the eFlow and studies, etc.
Also, there are certain places that you have to go through to get the eflow and that is based on your location. If you go to the SourceCF webpage there is info on the eflow and a map that tells you which provider to contact. <a target=_blank class=ftalternatingbarlinklarge href="http://www.sourcecf-crd.com/">http://www.sourcecf-crd.com/</a> I would contact them directly and they might be able to help educate your doctors, etc.
Good luck!
There is so much misinformation out there about the eFlow. And yes, there aren't a lot of studies on it yet, and there are concerns about dosing, etc., BUT it is a huge time saver and really enhances my husband's quality of life--so we are all for it!
Check out NoExcuses blog for lots of info on the eFlow and studies, etc.
Also, there are certain places that you have to go through to get the eflow and that is based on your location. If you go to the SourceCF webpage there is info on the eflow and a map that tells you which provider to contact. <a target=_blank class=ftalternatingbarlinklarge href="http://www.sourcecf-crd.com/">http://www.sourcecf-crd.com/</a> I would contact them directly and they might be able to help educate your doctors, etc.
Good luck!
blondelawyer
New member
We had an issue with getting Tobi to use in the eflow, but our doc does let my husband use colistin in it. The issue with the death--as far as I know--was an issue with premixed colistin, not the eFlow. Now patients mix their own colistinmethate.
There is so much misinformation out there about the eFlow. And yes, there aren't a lot of studies on it yet, and there are concerns about dosing, etc., BUT it is a huge time saver and really enhances my husband's quality of life--so we are all for it!
Check out NoExcuses blog for lots of info on the eFlow and studies, etc.
Also, there are certain places that you have to go through to get the eflow and that is based on your location. If you go to the SourceCF webpage there is info on the eflow and a map that tells you which provider to contact. <a target=_blank class=ftalternatingbarlinklarge href="http://www.sourcecf-crd.com/">http://www.sourcecf-crd.com/</a> I would contact them directly and they might be able to help educate your doctors, etc.
Good luck!
There is so much misinformation out there about the eFlow. And yes, there aren't a lot of studies on it yet, and there are concerns about dosing, etc., BUT it is a huge time saver and really enhances my husband's quality of life--so we are all for it!
Check out NoExcuses blog for lots of info on the eFlow and studies, etc.
Also, there are certain places that you have to go through to get the eflow and that is based on your location. If you go to the SourceCF webpage there is info on the eflow and a map that tells you which provider to contact. <a target=_blank class=ftalternatingbarlinklarge href="http://www.sourcecf-crd.com/">http://www.sourcecf-crd.com/</a> I would contact them directly and they might be able to help educate your doctors, etc.
Good luck!
blondelawyer
New member
We had an issue with getting Tobi to use in the eflow, but our doc does let my husband use colistin in it. The issue with the death--as far as I know--was an issue with premixed colistin, not the eFlow. Now patients mix their own colistinmethate.
There is so much misinformation out there about the eFlow. And yes, there aren't a lot of studies on it yet, and there are concerns about dosing, etc., BUT it is a huge time saver and really enhances my husband's quality of life--so we are all for it!
Check out NoExcuses blog for lots of info on the eFlow and studies, etc.
Also, there are certain places that you have to go through to get the eflow and that is based on your location. If you go to the SourceCF webpage there is info on the eflow and a map that tells you which provider to contact. <a target=_blank class=ftalternatingbarlinklarge href="http://www.sourcecf-crd.com/">http://www.sourcecf-crd.com/</a> I would contact them directly and they might be able to help educate your doctors, etc.
Good luck!
There is so much misinformation out there about the eFlow. And yes, there aren't a lot of studies on it yet, and there are concerns about dosing, etc., BUT it is a huge time saver and really enhances my husband's quality of life--so we are all for it!
Check out NoExcuses blog for lots of info on the eFlow and studies, etc.
Also, there are certain places that you have to go through to get the eflow and that is based on your location. If you go to the SourceCF webpage there is info on the eflow and a map that tells you which provider to contact. <a target=_blank class=ftalternatingbarlinklarge href="http://www.sourcecf-crd.com/">http://www.sourcecf-crd.com/</a> I would contact them directly and they might be able to help educate your doctors, etc.
Good luck!
blondelawyer
New member
We had an issue with getting Tobi to use in the eflow, but our doc does let my husband use colistin in it. The issue with the death--as far as I know--was an issue with premixed colistin, not the eFlow. Now patients mix their own colistinmethate.
There is so much misinformation out there about the eFlow. And yes, there aren't a lot of studies on it yet, and there are concerns about dosing, etc., BUT it is a huge time saver and really enhances my husband's quality of life--so we are all for it!
Check out NoExcuses blog for lots of info on the eFlow and studies, etc.
Also, there are certain places that you have to go through to get the eflow and that is based on your location. If you go to the SourceCF webpage there is info on the eflow and a map that tells you which provider to contact. <a target=_blank class=ftalternatingbarlinklarge href="http://www.sourcecf-crd.com/">http://www.sourcecf-crd.com/</a> I would contact them directly and they might be able to help educate your doctors, etc.
Good luck!
There is so much misinformation out there about the eFlow. And yes, there aren't a lot of studies on it yet, and there are concerns about dosing, etc., BUT it is a huge time saver and really enhances my husband's quality of life--so we are all for it!
Check out NoExcuses blog for lots of info on the eFlow and studies, etc.
Also, there are certain places that you have to go through to get the eflow and that is based on your location. If you go to the SourceCF webpage there is info on the eflow and a map that tells you which provider to contact. <a target=_blank class=ftalternatingbarlinklarge href="http://www.sourcecf-crd.com/">http://www.sourcecf-crd.com/</a> I would contact them directly and they might be able to help educate your doctors, etc.
Good luck!
blondelawyer
New member
We had an issue with getting Tobi to use in the eflow, but our doc does let my husband use colistin in it. The issue with the death--as far as I know--was an issue with premixed colistin, not the eFlow. Now patients mix their own colistinmethate.
<br />
<br />There is so much misinformation out there about the eFlow. And yes, there aren't a lot of studies on it yet, and there are concerns about dosing, etc., BUT it is a huge time saver and really enhances my husband's quality of life--so we are all for it!
<br />
<br />Check out NoExcuses blog for lots of info on the eFlow and studies, etc.
<br />
<br />Also, there are certain places that you have to go through to get the eflow and that is based on your location. If you go to the SourceCF webpage there is info on the eflow and a map that tells you which provider to contact. <a target=_blank class=ftalternatingbarlinklarge href="http://www.sourcecf-crd.com/">http://www.sourcecf-crd.com/</a> I would contact them directly and they might be able to help educate your doctors, etc.
<br />
<br />Good luck!
<br />
<br />There is so much misinformation out there about the eFlow. And yes, there aren't a lot of studies on it yet, and there are concerns about dosing, etc., BUT it is a huge time saver and really enhances my husband's quality of life--so we are all for it!
<br />
<br />Check out NoExcuses blog for lots of info on the eFlow and studies, etc.
<br />
<br />Also, there are certain places that you have to go through to get the eflow and that is based on your location. If you go to the SourceCF webpage there is info on the eflow and a map that tells you which provider to contact. <a target=_blank class=ftalternatingbarlinklarge href="http://www.sourcecf-crd.com/">http://www.sourcecf-crd.com/</a> I would contact them directly and they might be able to help educate your doctors, etc.
<br />
<br />Good luck!
I agree with Lisa. Go to the e-flow blog and look at the studies. In the little time that I had to look at them....I think the main concern would be that it looks like there were only 5 in the study group for Tobi. Lisa is also right that the Collistin was a pre-mixed issue; however, the Collistin was pre-mixed by a compound company. I think a lot of docs are now worried that these compound companies are clueless and certainly do not trust them with making decisions about how to mix meds for the e-flow based on the small amount of research that has been done. That may not be true....but, this is the concern my center expressed to me. I plan to print some of the research and maybe get that DVD on the blog that is only $3 and ask my doc to view it. There are many on here making the choice to go ahead with the e-flow; however, there are a few like myself who are not confident with that choice and have decided to do it the old-fashioned way. I may change soon; but, for now that is my choice.
As an alternative, there are places in other parts of the world where they use a vent that is put on the nebulizer and expels what is not breathed into your lungs out the window. I am clueless about it; but, I remember someone from another country posting about it. You might post that topic and see if anyone remembers or knows. I thought that was kind of clever.
As an alternative, there are places in other parts of the world where they use a vent that is put on the nebulizer and expels what is not breathed into your lungs out the window. I am clueless about it; but, I remember someone from another country posting about it. You might post that topic and see if anyone remembers or knows. I thought that was kind of clever.
I agree with Lisa. Go to the e-flow blog and look at the studies. In the little time that I had to look at them....I think the main concern would be that it looks like there were only 5 in the study group for Tobi. Lisa is also right that the Collistin was a pre-mixed issue; however, the Collistin was pre-mixed by a compound company. I think a lot of docs are now worried that these compound companies are clueless and certainly do not trust them with making decisions about how to mix meds for the e-flow based on the small amount of research that has been done. That may not be true....but, this is the concern my center expressed to me. I plan to print some of the research and maybe get that DVD on the blog that is only $3 and ask my doc to view it. There are many on here making the choice to go ahead with the e-flow; however, there are a few like myself who are not confident with that choice and have decided to do it the old-fashioned way. I may change soon; but, for now that is my choice.
As an alternative, there are places in other parts of the world where they use a vent that is put on the nebulizer and expels what is not breathed into your lungs out the window. I am clueless about it; but, I remember someone from another country posting about it. You might post that topic and see if anyone remembers or knows. I thought that was kind of clever.
As an alternative, there are places in other parts of the world where they use a vent that is put on the nebulizer and expels what is not breathed into your lungs out the window. I am clueless about it; but, I remember someone from another country posting about it. You might post that topic and see if anyone remembers or knows. I thought that was kind of clever.
I agree with Lisa. Go to the e-flow blog and look at the studies. In the little time that I had to look at them....I think the main concern would be that it looks like there were only 5 in the study group for Tobi. Lisa is also right that the Collistin was a pre-mixed issue; however, the Collistin was pre-mixed by a compound company. I think a lot of docs are now worried that these compound companies are clueless and certainly do not trust them with making decisions about how to mix meds for the e-flow based on the small amount of research that has been done. That may not be true....but, this is the concern my center expressed to me. I plan to print some of the research and maybe get that DVD on the blog that is only $3 and ask my doc to view it. There are many on here making the choice to go ahead with the e-flow; however, there are a few like myself who are not confident with that choice and have decided to do it the old-fashioned way. I may change soon; but, for now that is my choice.
As an alternative, there are places in other parts of the world where they use a vent that is put on the nebulizer and expels what is not breathed into your lungs out the window. I am clueless about it; but, I remember someone from another country posting about it. You might post that topic and see if anyone remembers or knows. I thought that was kind of clever.
As an alternative, there are places in other parts of the world where they use a vent that is put on the nebulizer and expels what is not breathed into your lungs out the window. I am clueless about it; but, I remember someone from another country posting about it. You might post that topic and see if anyone remembers or knows. I thought that was kind of clever.
I agree with Lisa. Go to the e-flow blog and look at the studies. In the little time that I had to look at them....I think the main concern would be that it looks like there were only 5 in the study group for Tobi. Lisa is also right that the Collistin was a pre-mixed issue; however, the Collistin was pre-mixed by a compound company. I think a lot of docs are now worried that these compound companies are clueless and certainly do not trust them with making decisions about how to mix meds for the e-flow based on the small amount of research that has been done. That may not be true....but, this is the concern my center expressed to me. I plan to print some of the research and maybe get that DVD on the blog that is only $3 and ask my doc to view it. There are many on here making the choice to go ahead with the e-flow; however, there are a few like myself who are not confident with that choice and have decided to do it the old-fashioned way. I may change soon; but, for now that is my choice.
As an alternative, there are places in other parts of the world where they use a vent that is put on the nebulizer and expels what is not breathed into your lungs out the window. I am clueless about it; but, I remember someone from another country posting about it. You might post that topic and see if anyone remembers or knows. I thought that was kind of clever.
As an alternative, there are places in other parts of the world where they use a vent that is put on the nebulizer and expels what is not breathed into your lungs out the window. I am clueless about it; but, I remember someone from another country posting about it. You might post that topic and see if anyone remembers or knows. I thought that was kind of clever.
I agree with Lisa. Go to the e-flow blog and look at the studies. In the little time that I had to look at them....I think the main concern would be that it looks like there were only 5 in the study group for Tobi. Lisa is also right that the Collistin was a pre-mixed issue; however, the Collistin was pre-mixed by a compound company. I think a lot of docs are now worried that these compound companies are clueless and certainly do not trust them with making decisions about how to mix meds for the e-flow based on the small amount of research that has been done. That may not be true....but, this is the concern my center expressed to me. I plan to print some of the research and maybe get that DVD on the blog that is only $3 and ask my doc to view it. There are many on here making the choice to go ahead with the e-flow; however, there are a few like myself who are not confident with that choice and have decided to do it the old-fashioned way. I may change soon; but, for now that is my choice.
<br />
<br />As an alternative, there are places in other parts of the world where they use a vent that is put on the nebulizer and expels what is not breathed into your lungs out the window. I am clueless about it; but, I remember someone from another country posting about it. You might post that topic and see if anyone remembers or knows. I thought that was kind of clever.
<br />
<br />As an alternative, there are places in other parts of the world where they use a vent that is put on the nebulizer and expels what is not breathed into your lungs out the window. I am clueless about it; but, I remember someone from another country posting about it. You might post that topic and see if anyone remembers or knows. I thought that was kind of clever.
I would love to see those death publications/notifications.
If they're using TOBI in an eFlow, the patient is getting WAY too much of the medication. They need to be using tobramycin with a much smaller dose.
Yes, the eFlow studies are small. But CF is a small patient population and if any more studies are done at all I doubt it will be for some time. As with ANYTHING (even the NAC I take, the long term azithromycin we're all taking, etc) we aren't 100% what will happen.
For me the risk/benefit ratio is worth it.
If they're using TOBI in an eFlow, the patient is getting WAY too much of the medication. They need to be using tobramycin with a much smaller dose.
Yes, the eFlow studies are small. But CF is a small patient population and if any more studies are done at all I doubt it will be for some time. As with ANYTHING (even the NAC I take, the long term azithromycin we're all taking, etc) we aren't 100% what will happen.
For me the risk/benefit ratio is worth it.
I would love to see those death publications/notifications.
If they're using TOBI in an eFlow, the patient is getting WAY too much of the medication. They need to be using tobramycin with a much smaller dose.
Yes, the eFlow studies are small. But CF is a small patient population and if any more studies are done at all I doubt it will be for some time. As with ANYTHING (even the NAC I take, the long term azithromycin we're all taking, etc) we aren't 100% what will happen.
For me the risk/benefit ratio is worth it.
If they're using TOBI in an eFlow, the patient is getting WAY too much of the medication. They need to be using tobramycin with a much smaller dose.
Yes, the eFlow studies are small. But CF is a small patient population and if any more studies are done at all I doubt it will be for some time. As with ANYTHING (even the NAC I take, the long term azithromycin we're all taking, etc) we aren't 100% what will happen.
For me the risk/benefit ratio is worth it.
I would love to see those death publications/notifications.
If they're using TOBI in an eFlow, the patient is getting WAY too much of the medication. They need to be using tobramycin with a much smaller dose.
Yes, the eFlow studies are small. But CF is a small patient population and if any more studies are done at all I doubt it will be for some time. As with ANYTHING (even the NAC I take, the long term azithromycin we're all taking, etc) we aren't 100% what will happen.
For me the risk/benefit ratio is worth it.
If they're using TOBI in an eFlow, the patient is getting WAY too much of the medication. They need to be using tobramycin with a much smaller dose.
Yes, the eFlow studies are small. But CF is a small patient population and if any more studies are done at all I doubt it will be for some time. As with ANYTHING (even the NAC I take, the long term azithromycin we're all taking, etc) we aren't 100% what will happen.
For me the risk/benefit ratio is worth it.
I would love to see those death publications/notifications.
If they're using TOBI in an eFlow, the patient is getting WAY too much of the medication. They need to be using tobramycin with a much smaller dose.
Yes, the eFlow studies are small. But CF is a small patient population and if any more studies are done at all I doubt it will be for some time. As with ANYTHING (even the NAC I take, the long term azithromycin we're all taking, etc) we aren't 100% what will happen.
For me the risk/benefit ratio is worth it.
If they're using TOBI in an eFlow, the patient is getting WAY too much of the medication. They need to be using tobramycin with a much smaller dose.
Yes, the eFlow studies are small. But CF is a small patient population and if any more studies are done at all I doubt it will be for some time. As with ANYTHING (even the NAC I take, the long term azithromycin we're all taking, etc) we aren't 100% what will happen.
For me the risk/benefit ratio is worth it.
I would love to see those death publications/notifications.
<br />
<br />If they're using TOBI in an eFlow, the patient is getting WAY too much of the medication. They need to be using tobramycin with a much smaller dose.
<br />
<br />Yes, the eFlow studies are small. But CF is a small patient population and if any more studies are done at all I doubt it will be for some time. As with ANYTHING (even the NAC I take, the long term azithromycin we're all taking, etc) we aren't 100% what will happen.
<br />
<br />For me the risk/benefit ratio is worth it.
<br />
<br />If they're using TOBI in an eFlow, the patient is getting WAY too much of the medication. They need to be using tobramycin with a much smaller dose.
<br />
<br />Yes, the eFlow studies are small. But CF is a small patient population and if any more studies are done at all I doubt it will be for some time. As with ANYTHING (even the NAC I take, the long term azithromycin we're all taking, etc) we aren't 100% what will happen.
<br />
<br />For me the risk/benefit ratio is worth it.