Hello been away

Athena · Jul 22, 2007

Hello everyone. I first want to thank everyone for the warm welcome and second apologize for not having posted in a while. I just have got back into the swing of things with medication the first time I posted and I really thought it was going to be easy for me, I was wrong. I'm followed at USC and had my second app. was on 07-18 and it was a little disapointing. I was told that my PFT was 81% only to find out that when the Dr. came in he said it was only 69% and was not happy about that. He said that they usually see a rise in PFT when a patient is put back on meds after being off for so long I guess mine dropped a little. I use CFpharmacy and have had horrible experiance with them because they take forever to get me my meds. I was wondering if anyone uses this pharmacy and if they like it. I was also wondering how hard has it been for some of you with low PFT to bring them back up again? I have a lot more I want to say and ask but don't want to bore anyone so I'll leave it at this for now. I would greatly appreciate any response from any of you and hope that u are all doing well.

Thank you<img src="i/expressions/face-icon-small-confused.gif" border="0">

Athena · Jul 22, 2007

Hello everyone. I first want to thank everyone for the warm welcome and second apologize for not having posted in a while. I just have got back into the swing of things with medication the first time I posted and I really thought it was going to be easy for me, I was wrong. I'm followed at USC and had my second app. was on 07-18 and it was a little disapointing. I was told that my PFT was 81% only to find out that when the Dr. came in he said it was only 69% and was not happy about that. He said that they usually see a rise in PFT when a patient is put back on meds after being off for so long I guess mine dropped a little. I use CFpharmacy and have had horrible experiance with them because they take forever to get me my meds. I was wondering if anyone uses this pharmacy and if they like it. I was also wondering how hard has it been for some of you with low PFT to bring them back up again? I have a lot more I want to say and ask but don't want to bore anyone so I'll leave it at this for now. I would greatly appreciate any response from any of you and hope that u are all doing well.

Thank you<img src="i/expressions/face-icon-small-confused.gif" border="0">

Athena · Jul 22, 2007

Hello everyone. I first want to thank everyone for the warm welcome and second apologize for not having posted in a while. I just have got back into the swing of things with medication the first time I posted and I really thought it was going to be easy for me, I was wrong. I'm followed at USC and had my second app. was on 07-18 and it was a little disapointing. I was told that my PFT was 81% only to find out that when the Dr. came in he said it was only 69% and was not happy about that. He said that they usually see a rise in PFT when a patient is put back on meds after being off for so long I guess mine dropped a little. I use CFpharmacy and have had horrible experiance with them because they take forever to get me my meds. I was wondering if anyone uses this pharmacy and if they like it. I was also wondering how hard has it been for some of you with low PFT to bring them back up again? I have a lot more I want to say and ask but don't want to bore anyone so I'll leave it at this for now. I would greatly appreciate any response from any of you and hope that u are all doing well.

Thank you<img src="i/expressions/face-icon-small-confused.gif" border="0">

Athena · Jul 22, 2007

Hello everyone. I first want to thank everyone for the warm welcome and second apologize for not having posted in a while. I just have got back into the swing of things with medication the first time I posted and I really thought it was going to be easy for me, I was wrong. I'm followed at USC and had my second app. was on 07-18 and it was a little disapointing. I was told that my PFT was 81% only to find out that when the Dr. came in he said it was only 69% and was not happy about that. He said that they usually see a rise in PFT when a patient is put back on meds after being off for so long I guess mine dropped a little. I use CFpharmacy and have had horrible experiance with them because they take forever to get me my meds. I was wondering if anyone uses this pharmacy and if they like it. I was also wondering how hard has it been for some of you with low PFT to bring them back up again? I have a lot more I want to say and ask but don't want to bore anyone so I'll leave it at this for now. I would greatly appreciate any response from any of you and hope that u are all doing well.

Thank you<img src="i/expressions/face-icon-small-confused.gif" border="0">

Athena · Jul 22, 2007

Hello everyone. I first want to thank everyone for the warm welcome and second apologize for not having posted in a while. I just have got back into the swing of things with medication the first time I posted and I really thought it was going to be easy for me, I was wrong. I'm followed at USC and had my second app. was on 07-18 and it was a little disapointing. I was told that my PFT was 81% only to find out that when the Dr. came in he said it was only 69% and was not happy about that. He said that they usually see a rise in PFT when a patient is put back on meds after being off for so long I guess mine dropped a little. I use CFpharmacy and have had horrible experiance with them because they take forever to get me my meds. I was wondering if anyone uses this pharmacy and if they like it. I was also wondering how hard has it been for some of you with low PFT to bring them back up again? I have a lot more I want to say and ask but don't want to bore anyone so I'll leave it at this for now. I would greatly appreciate any response from any of you and hope that u are all doing well.

Thank you<img src="i/expressions/face-icon-small-confused.gif" border="0">

Athena · Jul 22, 2007

Hello everyone. I first want to thank everyone for the warm welcome and second apologize for not having posted in a while. I just have got back into the swing of things with medication the first time I posted and I really thought it was going to be easy for me, I was wrong. I'm followed at USC and had my second app. was on 07-18 and it was a little disapointing. I was told that my PFT was 81% only to find out that when the Dr. came in he said it was only 69% and was not happy about that. He said that they usually see a rise in PFT when a patient is put back on meds after being off for so long I guess mine dropped a little. I use CFpharmacy and have had horrible experiance with them because they take forever to get me my meds. I was wondering if anyone uses this pharmacy and if they like it. I was also wondering how hard has it been for some of you with low PFT to bring them back up again? I have a lot more I want to say and ask but don't want to bore anyone so I'll leave it at this for now. I would greatly appreciate any response from any of you and hope that u are all doing well.

Thank you<img src="i/expressions/face-icon-small-confused.gif" border="0">

ladybug · Jul 22, 2007

Welcome back, Athena!

Sorry to hear about your FEV1... I hate when you expect something good and lo and behold get told your FEV isn't what you (or docs) expected. Urgh.

As far as brining it up, I would suggest being totally compliant with your treatments and meds... maybe even add an extra vest treatment if you have time. Also, EXERCISE! I love EXERCISE and it has been known to bring up FEV1 (as long as nothing else is going on, like an exacerbation)... So, try to start small with something cardio that gets your HR up and then work your way up. That's my suggestion anyway. I love the way cardio makes me feel (even though I hate doing it... LOL).

Second I can't stand CFPharmacy! I used to use them for everything, but after YEARS of incorrect billing and so many times they didn't get me my meds in time (honestly, you can only refill meds a week or so in advance, BUT with CF services, they say to give them 2 business days for processing and 2 days for delivery, so that really doesn't give you much of a "window", ya know?) So, I NEVER use them anymore. I use a local Walgreens. It took some time them getting used to my H.S. Rx, etc. but once its in place all is good and I can pick up my meds within a day or two (max if they have to order it for me), which is sooo nice! I cannot believe I stuck with CF services for so long. I was always on pins and needles about when I HAD to order my meds, when I'd get them, how I'd be billed for them, etc.. So, its better now.

Anyway, hope that info. helps. Keep us posted on your numbers... I hope you can get them up and get feeling better!

<img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug · Jul 22, 2007

Welcome back, Athena!

Sorry to hear about your FEV1... I hate when you expect something good and lo and behold get told your FEV isn't what you (or docs) expected. Urgh.

As far as brining it up, I would suggest being totally compliant with your treatments and meds... maybe even add an extra vest treatment if you have time. Also, EXERCISE! I love EXERCISE and it has been known to bring up FEV1 (as long as nothing else is going on, like an exacerbation)... So, try to start small with something cardio that gets your HR up and then work your way up. That's my suggestion anyway. I love the way cardio makes me feel (even though I hate doing it... LOL).

Second I can't stand CFPharmacy! I used to use them for everything, but after YEARS of incorrect billing and so many times they didn't get me my meds in time (honestly, you can only refill meds a week or so in advance, BUT with CF services, they say to give them 2 business days for processing and 2 days for delivery, so that really doesn't give you much of a "window", ya know?) So, I NEVER use them anymore. I use a local Walgreens. It took some time them getting used to my H.S. Rx, etc. but once its in place all is good and I can pick up my meds within a day or two (max if they have to order it for me), which is sooo nice! I cannot believe I stuck with CF services for so long. I was always on pins and needles about when I HAD to order my meds, when I'd get them, how I'd be billed for them, etc.. So, its better now.

Anyway, hope that info. helps. Keep us posted on your numbers... I hope you can get them up and get feeling better!

<img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug · Jul 22, 2007

Welcome back, Athena!

Sorry to hear about your FEV1... I hate when you expect something good and lo and behold get told your FEV isn't what you (or docs) expected. Urgh.

As far as brining it up, I would suggest being totally compliant with your treatments and meds... maybe even add an extra vest treatment if you have time. Also, EXERCISE! I love EXERCISE and it has been known to bring up FEV1 (as long as nothing else is going on, like an exacerbation)... So, try to start small with something cardio that gets your HR up and then work your way up. That's my suggestion anyway. I love the way cardio makes me feel (even though I hate doing it... LOL).

Second I can't stand CFPharmacy! I used to use them for everything, but after YEARS of incorrect billing and so many times they didn't get me my meds in time (honestly, you can only refill meds a week or so in advance, BUT with CF services, they say to give them 2 business days for processing and 2 days for delivery, so that really doesn't give you much of a "window", ya know?) So, I NEVER use them anymore. I use a local Walgreens. It took some time them getting used to my H.S. Rx, etc. but once its in place all is good and I can pick up my meds within a day or two (max if they have to order it for me), which is sooo nice! I cannot believe I stuck with CF services for so long. I was always on pins and needles about when I HAD to order my meds, when I'd get them, how I'd be billed for them, etc.. So, its better now.

Anyway, hope that info. helps. Keep us posted on your numbers... I hope you can get them up and get feeling better!

<img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug · Jul 22, 2007

Welcome back, Athena!

Sorry to hear about your FEV1... I hate when you expect something good and lo and behold get told your FEV isn't what you (or docs) expected. Urgh.

As far as brining it up, I would suggest being totally compliant with your treatments and meds... maybe even add an extra vest treatment if you have time. Also, EXERCISE! I love EXERCISE and it has been known to bring up FEV1 (as long as nothing else is going on, like an exacerbation)... So, try to start small with something cardio that gets your HR up and then work your way up. That's my suggestion anyway. I love the way cardio makes me feel (even though I hate doing it... LOL).

Second I can't stand CFPharmacy! I used to use them for everything, but after YEARS of incorrect billing and so many times they didn't get me my meds in time (honestly, you can only refill meds a week or so in advance, BUT with CF services, they say to give them 2 business days for processing and 2 days for delivery, so that really doesn't give you much of a "window", ya know?) So, I NEVER use them anymore. I use a local Walgreens. It took some time them getting used to my H.S. Rx, etc. but once its in place all is good and I can pick up my meds within a day or two (max if they have to order it for me), which is sooo nice! I cannot believe I stuck with CF services for so long. I was always on pins and needles about when I HAD to order my meds, when I'd get them, how I'd be billed for them, etc.. So, its better now.

Anyway, hope that info. helps. Keep us posted on your numbers... I hope you can get them up and get feeling better!

<img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug · Jul 22, 2007

Welcome back, Athena!

Sorry to hear about your FEV1... I hate when you expect something good and lo and behold get told your FEV isn't what you (or docs) expected. Urgh.

As far as brining it up, I would suggest being totally compliant with your treatments and meds... maybe even add an extra vest treatment if you have time. Also, EXERCISE! I love EXERCISE and it has been known to bring up FEV1 (as long as nothing else is going on, like an exacerbation)... So, try to start small with something cardio that gets your HR up and then work your way up. That's my suggestion anyway. I love the way cardio makes me feel (even though I hate doing it... LOL).

Second I can't stand CFPharmacy! I used to use them for everything, but after YEARS of incorrect billing and so many times they didn't get me my meds in time (honestly, you can only refill meds a week or so in advance, BUT with CF services, they say to give them 2 business days for processing and 2 days for delivery, so that really doesn't give you much of a "window", ya know?) So, I NEVER use them anymore. I use a local Walgreens. It took some time them getting used to my H.S. Rx, etc. but once its in place all is good and I can pick up my meds within a day or two (max if they have to order it for me), which is sooo nice! I cannot believe I stuck with CF services for so long. I was always on pins and needles about when I HAD to order my meds, when I'd get them, how I'd be billed for them, etc.. So, its better now.

Anyway, hope that info. helps. Keep us posted on your numbers... I hope you can get them up and get feeling better!

<img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug · Jul 22, 2007

Welcome back, Athena!

Sorry to hear about your FEV1... I hate when you expect something good and lo and behold get told your FEV isn't what you (or docs) expected. Urgh.

As far as brining it up, I would suggest being totally compliant with your treatments and meds... maybe even add an extra vest treatment if you have time. Also, EXERCISE! I love EXERCISE and it has been known to bring up FEV1 (as long as nothing else is going on, like an exacerbation)... So, try to start small with something cardio that gets your HR up and then work your way up. That's my suggestion anyway. I love the way cardio makes me feel (even though I hate doing it... LOL).

Second I can't stand CFPharmacy! I used to use them for everything, but after YEARS of incorrect billing and so many times they didn't get me my meds in time (honestly, you can only refill meds a week or so in advance, BUT with CF services, they say to give them 2 business days for processing and 2 days for delivery, so that really doesn't give you much of a "window", ya know?) So, I NEVER use them anymore. I use a local Walgreens. It took some time them getting used to my H.S. Rx, etc. but once its in place all is good and I can pick up my meds within a day or two (max if they have to order it for me), which is sooo nice! I cannot believe I stuck with CF services for so long. I was always on pins and needles about when I HAD to order my meds, when I'd get them, how I'd be billed for them, etc.. So, its better now.

Anyway, hope that info. helps. Keep us posted on your numbers... I hope you can get them up and get feeling better!

<img src="i/expressions/face-icon-small-smile.gif" border="0">

mom2lillian · Jul 22, 2007

I HATE CF Pharmacy, I dropped them and went withthe one through my rx insurance. My CF clinci said they are having tons of problems with them and many centers hav ebeen complianing because it is so impossible to work with them <img src="i/expressions/face-icon-small-confused.gif" border="0"> recently so I guess they have gotten worse <img src="i/expressions/face-icon-small-shocked.gif" border="0">!

mom2lillian · Jul 22, 2007

I HATE CF Pharmacy, I dropped them and went withthe one through my rx insurance. My CF clinci said they are having tons of problems with them and many centers hav ebeen complianing because it is so impossible to work with them <img src="i/expressions/face-icon-small-confused.gif" border="0"> recently so I guess they have gotten worse <img src="i/expressions/face-icon-small-shocked.gif" border="0">!

mom2lillian · Jul 22, 2007

I HATE CF Pharmacy, I dropped them and went withthe one through my rx insurance. My CF clinci said they are having tons of problems with them and many centers hav ebeen complianing because it is so impossible to work with them <img src="i/expressions/face-icon-small-confused.gif" border="0"> recently so I guess they have gotten worse <img src="i/expressions/face-icon-small-shocked.gif" border="0">!

mom2lillian · Jul 22, 2007

I HATE CF Pharmacy, I dropped them and went withthe one through my rx insurance. My CF clinci said they are having tons of problems with them and many centers hav ebeen complianing because it is so impossible to work with them <img src="i/expressions/face-icon-small-confused.gif" border="0"> recently so I guess they have gotten worse <img src="i/expressions/face-icon-small-shocked.gif" border="0">!

mom2lillian · Jul 22, 2007

I HATE CF Pharmacy, I dropped them and went withthe one through my rx insurance. My CF clinci said they are having tons of problems with them and many centers hav ebeen complianing because it is so impossible to work with them <img src="i/expressions/face-icon-small-confused.gif" border="0"> recently so I guess they have gotten worse <img src="i/expressions/face-icon-small-shocked.gif" border="0">!

mom2lillian · Jul 22, 2007

I HATE CF Pharmacy, I dropped them and went withthe one through my rx insurance. My CF clinci said they are having tons of problems with them and many centers hav ebeen complianing because it is so impossible to work with them <img src="i/expressions/face-icon-small-confused.gif" border="0"> recently so I guess they have gotten worse <img src="i/expressions/face-icon-small-shocked.gif" border="0">!

touchdown · Jul 22, 2007

Are we talking about the CF pharmacy in Orlando?
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfpharmacy.com/
">http://www.cfpharmacy.com/
</a>
Well in my opinion they SUCK. I used them for years too and they will send you to collections if you do not pay every single penny. You have been warned. There are many other qualified services out there. Shop around. Stay away from Cf pharmacy in Orlando.

I do not know about any other cf pharmacy but it is important to state which one so we do not give the good ones a bad rap.

Can you please mention the state of the CF pharmacy you use is in?

touchdown · Jul 22, 2007

Are we talking about the CF pharmacy in Orlando?
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfpharmacy.com/
">http://www.cfpharmacy.com/
</a>
Well in my opinion they SUCK. I used them for years too and they will send you to collections if you do not pay every single penny. You have been warned. There are many other qualified services out there. Shop around. Stay away from Cf pharmacy in Orlando.

I do not know about any other cf pharmacy but it is important to state which one so we do not give the good ones a bad rap.

Can you please mention the state of the CF pharmacy you use is in?

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