STARTING CAYSTON

[jbrandonAW]

I start cayston today. Its already noon and I am just now starting my vest. (my kids have been hell today - its take me 2 hours to get 3 nebs done). I know you have to do the cayston 3 times a day -how often to I have to space it?

Can I do it at 1,5, and then 9? The tomorrow get it on a 9,3,9 schedule? Or should I just skip a dose today since its so late.

Also some people have said it could make my lung function drop. I go to clinic on the 6th, I have already been feeling crumby but its getting better, I don't want them to see a drop and want to admit me when it might only be the cayston -should I weight and start it?

Also after I clean the neb - do I have to put the metal piece in alcohol until the next use?

 

[jbrandonAW]

I start cayston today. Its already noon and I am just now starting my vest. (my kids have been hell today - its take me 2 hours to get 3 nebs done). I know you have to do the cayston 3 times a day -how often to I have to space it?

Can I do it at 1,5, and then 9? The tomorrow get it on a 9,3,9 schedule? Or should I just skip a dose today since its so late.

Also some people have said it could make my lung function drop. I go to clinic on the 6th, I have already been feeling crumby but its getting better, I don't want them to see a drop and want to admit me when it might only be the cayston -should I weight and start it?

Also after I clean the neb - do I have to put the metal piece in alcohol until the next use?

 

[jbrandonAW]

I start cayston today. Its already noon and I am just now starting my vest. (my kids have been hell today - its take me 2 hours to get 3 nebs done). I know you have to do the cayston 3 times a day -how often to I have to space it?
<br />
<br />Can I do it at 1,5, and then 9? The tomorrow get it on a 9,3,9 schedule? Or should I just skip a dose today since its so late.
<br />
<br />Also some people have said it could make my lung function drop. I go to clinic on the 6th, I have already been feeling crumby but its getting better, I don't want them to see a drop and want to admit me when it might only be the cayston -should I weight and start it?
<br />
<br />Also after I clean the neb - do I have to put the metal piece in alcohol until the next use?

 

[jpetersen]

They say 4 hours apart. That was also the rule during the trial. I usually do about a 5 hour gap and a 7 or 8 hour gap.

For me, off months are the drop.

Never put it in alcohol. This document came from my CF team: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cffatboy.com/site/wp-content/uploads/2010/04/Guidance_on_eFlowApril6_2010.pdf">http://www.cffatboy.com/site/w...n_eFlowApril6_2010.pdf</a>

 

[jpetersen]

They say 4 hours apart. That was also the rule during the trial. I usually do about a 5 hour gap and a 7 or 8 hour gap.

For me, off months are the drop.

Never put it in alcohol. This document came from my CF team: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cffatboy.com/site/wp-content/uploads/2010/04/Guidance_on_eFlowApril6_2010.pdf">http://www.cffatboy.com/site/w...n_eFlowApril6_2010.pdf</a>

 

[jpetersen]

They say 4 hours apart. That was also the rule during the trial. I usually do about a 5 hour gap and a 7 or 8 hour gap.
<br />
<br />For me, off months are the drop.
<br />
<br />Never put it in alcohol. This document came from my CF team: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cffatboy.com/site/wp-content/uploads/2010/04/Guidance_on_eFlowApril6_2010.pdf">http://www.cffatboy.com/site/w...n_eFlowApril6_2010.pdf</a>

 

[carly23]

Hey!
I start my first time today to im actually pretty excited <img src="i/expressions/face-icon-small-smile.gif" border="0"> mines on the way in the UPS truck lol but yea thats kind of cool you just started today as well as me. See i also do pulmozyme and hypertonic saline and just those two take me an hour and a half?!? when i see my doc this month im going to ask him if i can get a new box or something as im sure it shouldnt take that long?!?especially when you go in hospital it dont even take but what 20 mins for both altogether???...i dont know but it is pretty time consuming i never sleep in as if i did id be late on everythn and not starting my day till the afternoon and i dont like that!lol <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[carly23]

Hey!
I start my first time today to im actually pretty excited <img src="i/expressions/face-icon-small-smile.gif" border="0"> mines on the way in the UPS truck lol but yea thats kind of cool you just started today as well as me. See i also do pulmozyme and hypertonic saline and just those two take me an hour and a half?!? when i see my doc this month im going to ask him if i can get a new box or something as im sure it shouldnt take that long?!?especially when you go in hospital it dont even take but what 20 mins for both altogether???...i dont know but it is pretty time consuming i never sleep in as if i did id be late on everythn and not starting my day till the afternoon and i dont like that!lol <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[carly23]

Hey!
<br />I start my first time today to im actually pretty excited <img src="i/expressions/face-icon-small-smile.gif" border="0"> mines on the way in the UPS truck lol but yea thats kind of cool you just started today as well as me. See i also do pulmozyme and hypertonic saline and just those two take me an hour and a half?!? when i see my doc this month im going to ask him if i can get a new box or something as im sure it shouldnt take that long?!?especially when you go in hospital it dont even take but what 20 mins for both altogether???...i dont know but it is pretty time consuming i never sleep in as if i did id be late on everythn and not starting my day till the afternoon and i dont like that!lol <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[jbrandonAW]

Yea mine doesn't take that long. I think about 5 for the pulmo and 20 for the hypertonic (its the longest). I have a pari proneb ultra.

Adding this cayston is gonna be like nothing... seriously.

 

[jbrandonAW]

Yea mine doesn't take that long. I think about 5 for the pulmo and 20 for the hypertonic (its the longest). I have a pari proneb ultra.

Adding this cayston is gonna be like nothing... seriously.

 

[jbrandonAW]

Yea mine doesn't take that long. I think about 5 for the pulmo and 20 for the hypertonic (its the longest). I have a pari proneb ultra.
<br />
<br />Adding this cayston is gonna be like nothing... seriously.

 

[LouLou]

Thanks for sharing the guidelines Jesse. I'd heard about that document and was excited to finally read it. Nothing earth shattering except that I never scaled back on my bronchodialator...guess I need to do that!

 

[LouLou]

Thanks for sharing the guidelines Jesse. I'd heard about that document and was excited to finally read it. Nothing earth shattering except that I never scaled back on my bronchodialator...guess I need to do that!

 

[LouLou]

Thanks for sharing the guidelines Jesse. I'd heard about that document and was excited to finally read it. Nothing earth shattering except that I never scaled back on my bronchodialator...guess I need to do that!

 

[Giggles]

Those of you using the pari pro nebs for sure get a new compressor if the HTS and PUlmozyme is taking longer than 20 mins. the compressor fan gets clogged up with the medicine that is released in the air and a new one will put you back down to the 15-20 minute mark for those drugs. I noticed this on my last compressor and when I switched to a new one my times went down! I also notice when I get a new pari pro neb nebulizer it takes a bit longer and then drops down the older the neb cup gets. Weird. I wonder if anyone else notices that???

Jennifer 38 with CF and CFRD

 

[Giggles]

Those of you using the pari pro nebs for sure get a new compressor if the HTS and PUlmozyme is taking longer than 20 mins. the compressor fan gets clogged up with the medicine that is released in the air and a new one will put you back down to the 15-20 minute mark for those drugs. I noticed this on my last compressor and when I switched to a new one my times went down! I also notice when I get a new pari pro neb nebulizer it takes a bit longer and then drops down the older the neb cup gets. Weird. I wonder if anyone else notices that???

Jennifer 38 with CF and CFRD

 

[Giggles]

Those of you using the pari pro nebs for sure get a new compressor if the HTS and PUlmozyme is taking longer than 20 mins. the compressor fan gets clogged up with the medicine that is released in the air and a new one will put you back down to the 15-20 minute mark for those drugs. I noticed this on my last compressor and when I switched to a new one my times went down! I also notice when I get a new pari pro neb nebulizer it takes a bit longer and then drops down the older the neb cup gets. Weird. I wonder if anyone else notices that???
<br />
<br />Jennifer 38 with CF and CFRD