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a little input please

B

bittyhorse23

New member
I use Miller Medical in Philadelphia for my compressor and my regular neb cups. I get my Pari for the TOBI from CF services Pharmacy.

I have never had any problems with Miller. I haven't tried to get a different compressor brand or anything yet so I am not sure how they would be if I asked for a different one. But whenever I have issues with the one I have I call and they send out a tech who usually just brings a new compressor with him and I get the new one.

The only thing I don't like is that when I get a prescription for my neb cups they will only send me one at a time for 30 days. So I would never have any backups. I resorted to having a friend of mine grab me a few from her work (sh is an ER nurse) so that I can have a couple in case one breaks - which they do from time to time.

Hope that was helpful and good luck on the presentation!
 
B

bittyhorse23

New member
I use Miller Medical in Philadelphia for my compressor and my regular neb cups. I get my Pari for the TOBI from CF services Pharmacy.

I have never had any problems with Miller. I haven't tried to get a different compressor brand or anything yet so I am not sure how they would be if I asked for a different one. But whenever I have issues with the one I have I call and they send out a tech who usually just brings a new compressor with him and I get the new one.

The only thing I don't like is that when I get a prescription for my neb cups they will only send me one at a time for 30 days. So I would never have any backups. I resorted to having a friend of mine grab me a few from her work (sh is an ER nurse) so that I can have a couple in case one breaks - which they do from time to time.

Hope that was helpful and good luck on the presentation!
 
B

bittyhorse23

New member
I use Miller Medical in Philadelphia for my compressor and my regular neb cups. I get my Pari for the TOBI from CF services Pharmacy.

I have never had any problems with Miller. I haven't tried to get a different compressor brand or anything yet so I am not sure how they would be if I asked for a different one. But whenever I have issues with the one I have I call and they send out a tech who usually just brings a new compressor with him and I get the new one.

The only thing I don't like is that when I get a prescription for my neb cups they will only send me one at a time for 30 days. So I would never have any backups. I resorted to having a friend of mine grab me a few from her work (sh is an ER nurse) so that I can have a couple in case one breaks - which they do from time to time.

Hope that was helpful and good luck on the presentation!
 
B

bittyhorse23

New member
I use Miller Medical in Philadelphia for my compressor and my regular neb cups. I get my Pari for the TOBI from CF services Pharmacy.

I have never had any problems with Miller. I haven't tried to get a different compressor brand or anything yet so I am not sure how they would be if I asked for a different one. But whenever I have issues with the one I have I call and they send out a tech who usually just brings a new compressor with him and I get the new one.

The only thing I don't like is that when I get a prescription for my neb cups they will only send me one at a time for 30 days. So I would never have any backups. I resorted to having a friend of mine grab me a few from her work (sh is an ER nurse) so that I can have a couple in case one breaks - which they do from time to time.

Hope that was helpful and good luck on the presentation!
 
B

bittyhorse23

New member
I use Miller Medical in Philadelphia for my compressor and my regular neb cups. I get my Pari for the TOBI from CF services Pharmacy.

I have never had any problems with Miller. I haven't tried to get a different compressor brand or anything yet so I am not sure how they would be if I asked for a different one. But whenever I have issues with the one I have I call and they send out a tech who usually just brings a new compressor with him and I get the new one.

The only thing I don't like is that when I get a prescription for my neb cups they will only send me one at a time for 30 days. So I would never have any backups. I resorted to having a friend of mine grab me a few from her work (sh is an ER nurse) so that I can have a couple in case one breaks - which they do from time to time.

Hope that was helpful and good luck on the presentation!
 
L

luke

Guest
Ironically, we have very few CF patients within my region so we really haven't encountered the neb/neb kit issue. For the record my company does provide the pari neb kits so if you can't get them email me and I will see what I can do.

thanks for the suggestions....anything else out there?
 
L

luke

Guest
Ironically, we have very few CF patients within my region so we really haven't encountered the neb/neb kit issue. For the record my company does provide the pari neb kits so if you can't get them email me and I will see what I can do.

thanks for the suggestions....anything else out there?
 
L

luke

Guest
Ironically, we have very few CF patients within my region so we really haven't encountered the neb/neb kit issue. For the record my company does provide the pari neb kits so if you can't get them email me and I will see what I can do.

thanks for the suggestions....anything else out there?
 
L

luke

Guest
Ironically, we have very few CF patients within my region so we really haven't encountered the neb/neb kit issue. For the record my company does provide the pari neb kits so if you can't get them email me and I will see what I can do.

thanks for the suggestions....anything else out there?
 
L

luke

Guest
Ironically, we have very few CF patients within my region so we really haven't encountered the neb/neb kit issue. For the record my company does provide the pari neb kits so if you can't get them email me and I will see what I can do.

thanks for the suggestions....anything else out there?
 
K

kayleesgrandma

New member
I don't have anything to contribute, since Kaylee has just started doing HS, but I just wanted to wish you luck, Luke--especially with the "outing". <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

kayleesgrandma

New member
I don't have anything to contribute, since Kaylee has just started doing HS, but I just wanted to wish you luck, Luke--especially with the "outing". <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

kayleesgrandma

New member
I don't have anything to contribute, since Kaylee has just started doing HS, but I just wanted to wish you luck, Luke--especially with the "outing". <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

kayleesgrandma

New member
I don't have anything to contribute, since Kaylee has just started doing HS, but I just wanted to wish you luck, Luke--especially with the "outing". <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

kayleesgrandma

New member
I don't have anything to contribute, since Kaylee has just started doing HS, but I just wanted to wish you luck, Luke--especially with the "outing". <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
6

65rosessamurai

Guest
If "CF outing" can be re-worded as "CF coming out"...got a chuckle, but I can relate! Only one person in my company knows about my CF, no one else.

As for much help, all I can say is nothing but complaints....

All the way from Japan, I asked Pari for assistance in obtaining the eFlow, with no results.
I had askes CF Sources, again I had no results.
I guess the "big picture" would be whether these companies look at us as "just another customer" or as a patient who is in a "life-or-death" demand for the products they supply...hey, how's that for an idea to add to your theme?
One point to add is that these companies (at least PARI) had a branch office in Japan, so they weren't dealing with an international related problem of supplying.
Also, their follow-up to their e-mail was quite slow.

I did come up with one compliment...my doc gave me an OMRON nebulizer, and OMRON offers a 24/7 hotline service..hope I don't need it, but just the fact that it's there is a relief to know.

Hope that was some constructive input for you...good luck with your presentation, luke!
 
6

65rosessamurai

Guest
If "CF outing" can be re-worded as "CF coming out"...got a chuckle, but I can relate! Only one person in my company knows about my CF, no one else.

As for much help, all I can say is nothing but complaints....

All the way from Japan, I asked Pari for assistance in obtaining the eFlow, with no results.
I had askes CF Sources, again I had no results.
I guess the "big picture" would be whether these companies look at us as "just another customer" or as a patient who is in a "life-or-death" demand for the products they supply...hey, how's that for an idea to add to your theme?
One point to add is that these companies (at least PARI) had a branch office in Japan, so they weren't dealing with an international related problem of supplying.
Also, their follow-up to their e-mail was quite slow.

I did come up with one compliment...my doc gave me an OMRON nebulizer, and OMRON offers a 24/7 hotline service..hope I don't need it, but just the fact that it's there is a relief to know.

Hope that was some constructive input for you...good luck with your presentation, luke!
 
6

65rosessamurai

Guest
If "CF outing" can be re-worded as "CF coming out"...got a chuckle, but I can relate! Only one person in my company knows about my CF, no one else.

As for much help, all I can say is nothing but complaints....

All the way from Japan, I asked Pari for assistance in obtaining the eFlow, with no results.
I had askes CF Sources, again I had no results.
I guess the "big picture" would be whether these companies look at us as "just another customer" or as a patient who is in a "life-or-death" demand for the products they supply...hey, how's that for an idea to add to your theme?
One point to add is that these companies (at least PARI) had a branch office in Japan, so they weren't dealing with an international related problem of supplying.
Also, their follow-up to their e-mail was quite slow.

I did come up with one compliment...my doc gave me an OMRON nebulizer, and OMRON offers a 24/7 hotline service..hope I don't need it, but just the fact that it's there is a relief to know.

Hope that was some constructive input for you...good luck with your presentation, luke!
 
6

65rosessamurai

Guest
If "CF outing" can be re-worded as "CF coming out"...got a chuckle, but I can relate! Only one person in my company knows about my CF, no one else.

As for much help, all I can say is nothing but complaints....

All the way from Japan, I asked Pari for assistance in obtaining the eFlow, with no results.
I had askes CF Sources, again I had no results.
I guess the "big picture" would be whether these companies look at us as "just another customer" or as a patient who is in a "life-or-death" demand for the products they supply...hey, how's that for an idea to add to your theme?
One point to add is that these companies (at least PARI) had a branch office in Japan, so they weren't dealing with an international related problem of supplying.
Also, their follow-up to their e-mail was quite slow.

I did come up with one compliment...my doc gave me an OMRON nebulizer, and OMRON offers a 24/7 hotline service..hope I don't need it, but just the fact that it's there is a relief to know.

Hope that was some constructive input for you...good luck with your presentation, luke!
 
6

65rosessamurai

Guest
If "CF outing" can be re-worded as "CF coming out"...got a chuckle, but I can relate! Only one person in my company knows about my CF, no one else.

As for much help, all I can say is nothing but complaints....

All the way from Japan, I asked Pari for assistance in obtaining the eFlow, with no results.
I had askes CF Sources, again I had no results.
I guess the "big picture" would be whether these companies look at us as "just another customer" or as a patient who is in a "life-or-death" demand for the products they supply...hey, how's that for an idea to add to your theme?
One point to add is that these companies (at least PARI) had a branch office in Japan, so they weren't dealing with an international related problem of supplying.
Also, their follow-up to their e-mail was quite slow.

I did come up with one compliment...my doc gave me an OMRON nebulizer, and OMRON offers a 24/7 hotline service..hope I don't need it, but just the fact that it's there is a relief to know.

Hope that was some constructive input for you...good luck with your presentation, luke!
 
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