clinic visit and the eflow

J

jfarel

New member
So I went for my 3 month cf clinic visit last week and they told me most of their patients have switched over the eflow. They are recommending it for everyone and the results have been good so far.

Just wondering what everyone else's clinic is doing about the eflow. I thought it was interesting that my clinic has switched so fast.

My pft's were down this visit, not sure exactly why, so i am trying 5 days of prednisone and if that doesn't help its back to IV's, for the first time since October. It will have been about 5 months so that's pretty good for me now days.

After all my hard work I was really disappointed with the pft results. They had been great 3 months ago but my chest tightness and SOB had really been getting worse the past 2-4 weeks so I was really expecting this. I haven't felt sick or anything just losing lung function. Where its at now I can't afford to fool around, as I'm pretty much TX level according to my pft's. MY SATs were 93 percent though so I was at least pleased with that, considering I'm not on O2.
 
J

jfarel

New member
So I went for my 3 month cf clinic visit last week and they told me most of their patients have switched over the eflow. They are recommending it for everyone and the results have been good so far.

Just wondering what everyone else's clinic is doing about the eflow. I thought it was interesting that my clinic has switched so fast.

My pft's were down this visit, not sure exactly why, so i am trying 5 days of prednisone and if that doesn't help its back to IV's, for the first time since October. It will have been about 5 months so that's pretty good for me now days.

After all my hard work I was really disappointed with the pft results. They had been great 3 months ago but my chest tightness and SOB had really been getting worse the past 2-4 weeks so I was really expecting this. I haven't felt sick or anything just losing lung function. Where its at now I can't afford to fool around, as I'm pretty much TX level according to my pft's. MY SATs were 93 percent though so I was at least pleased with that, considering I'm not on O2.
 
J

jfarel

New member
So I went for my 3 month cf clinic visit last week and they told me most of their patients have switched over the eflow. They are recommending it for everyone and the results have been good so far.

Just wondering what everyone else's clinic is doing about the eflow. I thought it was interesting that my clinic has switched so fast.

My pft's were down this visit, not sure exactly why, so i am trying 5 days of prednisone and if that doesn't help its back to IV's, for the first time since October. It will have been about 5 months so that's pretty good for me now days.

After all my hard work I was really disappointed with the pft results. They had been great 3 months ago but my chest tightness and SOB had really been getting worse the past 2-4 weeks so I was really expecting this. I haven't felt sick or anything just losing lung function. Where its at now I can't afford to fool around, as I'm pretty much TX level according to my pft's. MY SATs were 93 percent though so I was at least pleased with that, considering I'm not on O2.
 
C

Chaggie

New member
Mine won't even consider it. The head of the clinic is calling it an "experimental device" and won't even look at it till more studies are done. I've berated him with so much info on it he won't even talk to me anymore.
 
C

Chaggie

New member
Mine won't even consider it. The head of the clinic is calling it an "experimental device" and won't even look at it till more studies are done. I've berated him with so much info on it he won't even talk to me anymore.
 
C

Chaggie

New member
Mine won't even consider it. The head of the clinic is calling it an "experimental device" and won't even look at it till more studies are done. I've berated him with so much info on it he won't even talk to me anymore.
 
G

getahobby

New member
My clinic won't let anybody do TOBI in it but they will let you do the formulated Tobramycin in it or Colistin.
 
G

getahobby

New member
My clinic won't let anybody do TOBI in it but they will let you do the formulated Tobramycin in it or Colistin.
 
G

getahobby

New member
My clinic won't let anybody do TOBI in it but they will let you do the formulated Tobramycin in it or Colistin.
 
D

dramamama

New member
Hi-
Well, hate to say anything bad about the eflow, but I feel much worse using it. Keep in mind, I have waaay more damage to my lungs (fev 1 high to mid 50's) than mostof the younger folks who are having fantastic results with it....and I have reactive airway issues which makes trying new things always interesting. While on the eflow, I have TERRIBLE inflammation and shortness of breath. Unlike Amy, I do not get nice mucus plugs up, I simply shut down altogether. I went on IV's in December due to lower pfts and I got better not after the meds, but only when I quit using the eflow. The efow is really a superior device....my clinic believes it has helped many youger patients eradicate their pseudo, but for those with lower pft's, I don't know that I believe it is the answer to everything....I guess I should say for me, it has not been great. Don't want to be a downer, I just don't want those who feel worse on it to believe they are the only ones.
 
D

dramamama

New member
Hi-
Well, hate to say anything bad about the eflow, but I feel much worse using it. Keep in mind, I have waaay more damage to my lungs (fev 1 high to mid 50's) than mostof the younger folks who are having fantastic results with it....and I have reactive airway issues which makes trying new things always interesting. While on the eflow, I have TERRIBLE inflammation and shortness of breath. Unlike Amy, I do not get nice mucus plugs up, I simply shut down altogether. I went on IV's in December due to lower pfts and I got better not after the meds, but only when I quit using the eflow. The efow is really a superior device....my clinic believes it has helped many youger patients eradicate their pseudo, but for those with lower pft's, I don't know that I believe it is the answer to everything....I guess I should say for me, it has not been great. Don't want to be a downer, I just don't want those who feel worse on it to believe they are the only ones.
 
D

dramamama

New member
Hi-
Well, hate to say anything bad about the eflow, but I feel much worse using it. Keep in mind, I have waaay more damage to my lungs (fev 1 high to mid 50's) than mostof the younger folks who are having fantastic results with it....and I have reactive airway issues which makes trying new things always interesting. While on the eflow, I have TERRIBLE inflammation and shortness of breath. Unlike Amy, I do not get nice mucus plugs up, I simply shut down altogether. I went on IV's in December due to lower pfts and I got better not after the meds, but only when I quit using the eflow. The efow is really a superior device....my clinic believes it has helped many youger patients eradicate their pseudo, but for those with lower pft's, I don't know that I believe it is the answer to everything....I guess I should say for me, it has not been great. Don't want to be a downer, I just don't want those who feel worse on it to believe they are the only ones.
 
C

Chaggie

New member
Chiron won't let TOBI be used in combination with the eFlow, they have a medical-method patent keeping it from being used with it, that's why instead they use the formulated tobramycin.
 
C

Chaggie

New member
Chiron won't let TOBI be used in combination with the eFlow, they have a medical-method patent keeping it from being used with it, that's why instead they use the formulated tobramycin.
 
C

Chaggie

New member
Chiron won't let TOBI be used in combination with the eFlow, they have a medical-method patent keeping it from being used with it, that's why instead they use the formulated tobramycin.
 
N

NoExcuses

New member
Funny that you mention the quick conversion jfarel. mine mentioned the same thing today about the eFlow. All new nebbed drugs coming to the market will be eFLow or MDI (like TIP).

they're seeing great results with their patients as well. GHPP out here in california is covering meds through a certain pharmacy now so they say, so more patients will have access to the eFlow.

like any device/med, it's not a panacea. there will be some people who aren't a fan. but with new drugs coming to market on eFlow or TIP, give it 5 years until traditional nebs/compressors aren't even made anymore.
 
N

NoExcuses

New member
Funny that you mention the quick conversion jfarel. mine mentioned the same thing today about the eFlow. All new nebbed drugs coming to the market will be eFLow or MDI (like TIP).

they're seeing great results with their patients as well. GHPP out here in california is covering meds through a certain pharmacy now so they say, so more patients will have access to the eFlow.

like any device/med, it's not a panacea. there will be some people who aren't a fan. but with new drugs coming to market on eFlow or TIP, give it 5 years until traditional nebs/compressors aren't even made anymore.
 
N

NoExcuses

New member
Funny that you mention the quick conversion jfarel. mine mentioned the same thing today about the eFlow. All new nebbed drugs coming to the market will be eFLow or MDI (like TIP).

they're seeing great results with their patients as well. GHPP out here in california is covering meds through a certain pharmacy now so they say, so more patients will have access to the eFlow.

like any device/med, it's not a panacea. there will be some people who aren't a fan. but with new drugs coming to market on eFlow or TIP, give it 5 years until traditional nebs/compressors aren't even made anymore.
 
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