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CFRI Conference-UPDATED
- Thread starter julie
- Start date
CFRI Conference
The website is www.cfri.org, they are a big supporter of CF research and this is their 21st annual conference. I've had the opportunity to share more about my male infertility website here, as well as pass out some business cards for the new (not quite) non-profit Disability Advocates for Cystic Fibrosis.
Last night after dinner they had a raffle, that was a lot of fun, and then they did a memorial tribute to those CFers whom we've lost. It was really fabulous considering the circumstances.
The wonderful thing is, and I didn't know until I arrived, is that meals are included with the conference price and for those who can't afford some or all of the cost to attend, they DO offer scholarships for both the conference cost and even to help with airline tickets.
I know this year I will not only be doing my CFF fundraising, but I think I will be advocating and fundraising very heavily for CFRI, they are here for the CF person NOW! and to me, that is extremely important!
The website is www.cfri.org, they are a big supporter of CF research and this is their 21st annual conference. I've had the opportunity to share more about my male infertility website here, as well as pass out some business cards for the new (not quite) non-profit Disability Advocates for Cystic Fibrosis.
Last night after dinner they had a raffle, that was a lot of fun, and then they did a memorial tribute to those CFers whom we've lost. It was really fabulous considering the circumstances.
The wonderful thing is, and I didn't know until I arrived, is that meals are included with the conference price and for those who can't afford some or all of the cost to attend, they DO offer scholarships for both the conference cost and even to help with airline tickets.
I know this year I will not only be doing my CFF fundraising, but I think I will be advocating and fundraising very heavily for CFRI, they are here for the CF person NOW! and to me, that is extremely important!
CFRI Conference
The website is www.cfri.org, they are a big supporter of CF research and this is their 21st annual conference. I've had the opportunity to share more about my male infertility website here, as well as pass out some business cards for the new (not quite) non-profit Disability Advocates for Cystic Fibrosis.
Last night after dinner they had a raffle, that was a lot of fun, and then they did a memorial tribute to those CFers whom we've lost. It was really fabulous considering the circumstances.
The wonderful thing is, and I didn't know until I arrived, is that meals are included with the conference price and for those who can't afford some or all of the cost to attend, they DO offer scholarships for both the conference cost and even to help with airline tickets.
I know this year I will not only be doing my CFF fundraising, but I think I will be advocating and fundraising very heavily for CFRI, they are here for the CF person NOW! and to me, that is extremely important!
The website is www.cfri.org, they are a big supporter of CF research and this is their 21st annual conference. I've had the opportunity to share more about my male infertility website here, as well as pass out some business cards for the new (not quite) non-profit Disability Advocates for Cystic Fibrosis.
Last night after dinner they had a raffle, that was a lot of fun, and then they did a memorial tribute to those CFers whom we've lost. It was really fabulous considering the circumstances.
The wonderful thing is, and I didn't know until I arrived, is that meals are included with the conference price and for those who can't afford some or all of the cost to attend, they DO offer scholarships for both the conference cost and even to help with airline tickets.
I know this year I will not only be doing my CFF fundraising, but I think I will be advocating and fundraising very heavily for CFRI, they are here for the CF person NOW! and to me, that is extremely important!
CFRI Conference
The website is www.cfri.org, they are a big supporter of CF research and this is their 21st annual conference. I've had the opportunity to share more about my male infertility website here, as well as pass out some business cards for the new (not quite) non-profit Disability Advocates for Cystic Fibrosis.
Last night after dinner they had a raffle, that was a lot of fun, and then they did a memorial tribute to those CFers whom we've lost. It was really fabulous considering the circumstances.
The wonderful thing is, and I didn't know until I arrived, is that meals are included with the conference price and for those who can't afford some or all of the cost to attend, they DO offer scholarships for both the conference cost and even to help with airline tickets.
I know this year I will not only be doing my CFF fundraising, but I think I will be advocating and fundraising very heavily for CFRI, they are here for the CF person NOW! and to me, that is extremely important!
The website is www.cfri.org, they are a big supporter of CF research and this is their 21st annual conference. I've had the opportunity to share more about my male infertility website here, as well as pass out some business cards for the new (not quite) non-profit Disability Advocates for Cystic Fibrosis.
Last night after dinner they had a raffle, that was a lot of fun, and then they did a memorial tribute to those CFers whom we've lost. It was really fabulous considering the circumstances.
The wonderful thing is, and I didn't know until I arrived, is that meals are included with the conference price and for those who can't afford some or all of the cost to attend, they DO offer scholarships for both the conference cost and even to help with airline tickets.
I know this year I will not only be doing my CFF fundraising, but I think I will be advocating and fundraising very heavily for CFRI, they are here for the CF person NOW! and to me, that is extremely important!
CFRI Conference
The website is www.cfri.org, they are a big supporter of CF research and this is their 21st annual conference. I've had the opportunity to share more about my male infertility website here, as well as pass out some business cards for the new (not quite) non-profit Disability Advocates for Cystic Fibrosis.
Last night after dinner they had a raffle, that was a lot of fun, and then they did a memorial tribute to those CFers whom we've lost. It was really fabulous considering the circumstances.
The wonderful thing is, and I didn't know until I arrived, is that meals are included with the conference price and for those who can't afford some or all of the cost to attend, they DO offer scholarships for both the conference cost and even to help with airline tickets.
I know this year I will not only be doing my CFF fundraising, but I think I will be advocating and fundraising very heavily for CFRI, they are here for the CF person NOW! and to me, that is extremely important!
The website is www.cfri.org, they are a big supporter of CF research and this is their 21st annual conference. I've had the opportunity to share more about my male infertility website here, as well as pass out some business cards for the new (not quite) non-profit Disability Advocates for Cystic Fibrosis.
Last night after dinner they had a raffle, that was a lot of fun, and then they did a memorial tribute to those CFers whom we've lost. It was really fabulous considering the circumstances.
The wonderful thing is, and I didn't know until I arrived, is that meals are included with the conference price and for those who can't afford some or all of the cost to attend, they DO offer scholarships for both the conference cost and even to help with airline tickets.
I know this year I will not only be doing my CFF fundraising, but I think I will be advocating and fundraising very heavily for CFRI, they are here for the CF person NOW! and to me, that is extremely important!
CFRI Conference
The website is www.cfri.org, they are a big supporter of CF research and this is their 21st annual conference. I've had the opportunity to share more about my male infertility website here, as well as pass out some business cards for the new (not quite) non-profit Disability Advocates for Cystic Fibrosis.
<br />
<br />Last night after dinner they had a raffle, that was a lot of fun, and then they did a memorial tribute to those CFers whom we've lost. It was really fabulous considering the circumstances.
<br />
<br />The wonderful thing is, and I didn't know until I arrived, is that meals are included with the conference price and for those who can't afford some or all of the cost to attend, they DO offer scholarships for both the conference cost and even to help with airline tickets.
<br />
<br />I know this year I will not only be doing my CFF fundraising, but I think I will be advocating and fundraising very heavily for CFRI, they are here for the CF person NOW! and to me, that is extremely important!
<br />
The website is www.cfri.org, they are a big supporter of CF research and this is their 21st annual conference. I've had the opportunity to share more about my male infertility website here, as well as pass out some business cards for the new (not quite) non-profit Disability Advocates for Cystic Fibrosis.
<br />
<br />Last night after dinner they had a raffle, that was a lot of fun, and then they did a memorial tribute to those CFers whom we've lost. It was really fabulous considering the circumstances.
<br />
<br />The wonderful thing is, and I didn't know until I arrived, is that meals are included with the conference price and for those who can't afford some or all of the cost to attend, they DO offer scholarships for both the conference cost and even to help with airline tickets.
<br />
<br />I know this year I will not only be doing my CFF fundraising, but I think I will be advocating and fundraising very heavily for CFRI, they are here for the CF person NOW! and to me, that is extremely important!
<br />
CFRI Conference
Ok, I thought I'd share some info from the notes that I took from the CFRI conference.
-Therapies for CF are starting to be based on your CF muation, so KNOW your mutation. If you haven't been genetically tested, it is highly recommended
-For young boys with CF, studies show that 14-17 is the ideal time for (preferably) a parent to share the possibility of infertility, and to have a semen analysis done
-Only 10% of CFers participate in research studies, we need MUCH more than 10% to make an impact.
www.cff.org/research/ClinicalReserach/find/
<a target=_blank class=ftalternatingbarlinklarge href="http://clinicaltrials.gov
">http://clinicaltrials.gov
</a> www.Cfcenter.stanford.edu
-Have your delivery system (nebulizer...) cleaned and serviced regularly
-Pulmosyme improves sputum (thins) at approx. 30 minutes after administration. Therefore it is recommended that you either 1. vest first, wait 30min then pulmozyme OR 2. vest, then immediately follow with pulmozyme (this 2nd method will get the pulmozyme deeper into the lungs. Either method 1. or 2. is effective.
-DO NOT mix pulmozyme with any other medication, preferable it should have it's own nebulizer chamber
-Don't nebulize the "dead volume" (aka residual). For example, in a 2.5ml dose, you are only suppose to get 2ml, the .5 is "extra" to compensate for the dead volume. A number of people waste time shaking the chamber, tapping or flicking it to get the extra residual out. This increases your therapy time by approx.8-10 minutes.
Another example is if you are rx'd 4ml of HTS, you are suppose to be getting 3.5ml and .5 would be the residual. Studies have shown that if you increase the amount you put in the neb. chamber to 4.5ml instead of 4, you can actually decrease your neb. time from 18 minutes (for 4ml) to 11 minutes (for 4.5ml) This is only going to work for "non-metered" medications though. It is not worth the cost to waste and extra vial of a pre-metered medication.
-YOUR respiratory rate can affect the amount of medication your lungs recieve. If you are breathing too slow there is a low rate of absorption, if you are breathing too fast there is a low rate of absorption. Respiration rate of about 12 per minute had the HIGHEST rate of absorption.
-Overlapping the vest while using nebulized medications does not appear to affect the absorption of the nebulized medication. Source: sittes 2006 study
-A Bipap (not C pap) machine can help with breathing, and you can also attach a nebulizer to this machine. The delivery rate is actually HIGHLY increased and delivery time decreased with a bipap versus a nebulizer, however the cleaning of the Bipap machine is quite extensive.
-Some of the faster nebulizers are
E Flow by PARI
Aeronebgo by AEROGEN
MicroAir by OMRON
Downside of these machines is that they use a "vibrating mesh plate" that often gets clogged with particles. The solution is to frequently order new mesh plates. Might not be cost effective if your ins. doesn't cover new mesh plates as often as you need them.
-There are over 1601 KNOWN CF mutations (WOW!!!)
Ok, I thought I'd share some info from the notes that I took from the CFRI conference.
-Therapies for CF are starting to be based on your CF muation, so KNOW your mutation. If you haven't been genetically tested, it is highly recommended
-For young boys with CF, studies show that 14-17 is the ideal time for (preferably) a parent to share the possibility of infertility, and to have a semen analysis done
-Only 10% of CFers participate in research studies, we need MUCH more than 10% to make an impact.
www.cff.org/research/ClinicalReserach/find/
<a target=_blank class=ftalternatingbarlinklarge href="http://clinicaltrials.gov
">http://clinicaltrials.gov
</a> www.Cfcenter.stanford.edu
-Have your delivery system (nebulizer...) cleaned and serviced regularly
-Pulmosyme improves sputum (thins) at approx. 30 minutes after administration. Therefore it is recommended that you either 1. vest first, wait 30min then pulmozyme OR 2. vest, then immediately follow with pulmozyme (this 2nd method will get the pulmozyme deeper into the lungs. Either method 1. or 2. is effective.
-DO NOT mix pulmozyme with any other medication, preferable it should have it's own nebulizer chamber
-Don't nebulize the "dead volume" (aka residual). For example, in a 2.5ml dose, you are only suppose to get 2ml, the .5 is "extra" to compensate for the dead volume. A number of people waste time shaking the chamber, tapping or flicking it to get the extra residual out. This increases your therapy time by approx.8-10 minutes.
Another example is if you are rx'd 4ml of HTS, you are suppose to be getting 3.5ml and .5 would be the residual. Studies have shown that if you increase the amount you put in the neb. chamber to 4.5ml instead of 4, you can actually decrease your neb. time from 18 minutes (for 4ml) to 11 minutes (for 4.5ml) This is only going to work for "non-metered" medications though. It is not worth the cost to waste and extra vial of a pre-metered medication.
-YOUR respiratory rate can affect the amount of medication your lungs recieve. If you are breathing too slow there is a low rate of absorption, if you are breathing too fast there is a low rate of absorption. Respiration rate of about 12 per minute had the HIGHEST rate of absorption.
-Overlapping the vest while using nebulized medications does not appear to affect the absorption of the nebulized medication. Source: sittes 2006 study
-A Bipap (not C pap) machine can help with breathing, and you can also attach a nebulizer to this machine. The delivery rate is actually HIGHLY increased and delivery time decreased with a bipap versus a nebulizer, however the cleaning of the Bipap machine is quite extensive.
-Some of the faster nebulizers are
E Flow by PARI
Aeronebgo by AEROGEN
MicroAir by OMRON
Downside of these machines is that they use a "vibrating mesh plate" that often gets clogged with particles. The solution is to frequently order new mesh plates. Might not be cost effective if your ins. doesn't cover new mesh plates as often as you need them.
-There are over 1601 KNOWN CF mutations (WOW!!!)
CFRI Conference
Ok, I thought I'd share some info from the notes that I took from the CFRI conference.
-Therapies for CF are starting to be based on your CF muation, so KNOW your mutation. If you haven't been genetically tested, it is highly recommended
-For young boys with CF, studies show that 14-17 is the ideal time for (preferably) a parent to share the possibility of infertility, and to have a semen analysis done
-Only 10% of CFers participate in research studies, we need MUCH more than 10% to make an impact.
www.cff.org/research/ClinicalReserach/find/
<a target=_blank class=ftalternatingbarlinklarge href="http://clinicaltrials.gov
">http://clinicaltrials.gov
</a> www.Cfcenter.stanford.edu
-Have your delivery system (nebulizer...) cleaned and serviced regularly
-Pulmosyme improves sputum (thins) at approx. 30 minutes after administration. Therefore it is recommended that you either 1. vest first, wait 30min then pulmozyme OR 2. vest, then immediately follow with pulmozyme (this 2nd method will get the pulmozyme deeper into the lungs. Either method 1. or 2. is effective.
-DO NOT mix pulmozyme with any other medication, preferable it should have it's own nebulizer chamber
-Don't nebulize the "dead volume" (aka residual). For example, in a 2.5ml dose, you are only suppose to get 2ml, the .5 is "extra" to compensate for the dead volume. A number of people waste time shaking the chamber, tapping or flicking it to get the extra residual out. This increases your therapy time by approx.8-10 minutes.
Another example is if you are rx'd 4ml of HTS, you are suppose to be getting 3.5ml and .5 would be the residual. Studies have shown that if you increase the amount you put in the neb. chamber to 4.5ml instead of 4, you can actually decrease your neb. time from 18 minutes (for 4ml) to 11 minutes (for 4.5ml) This is only going to work for "non-metered" medications though. It is not worth the cost to waste and extra vial of a pre-metered medication.
-YOUR respiratory rate can affect the amount of medication your lungs recieve. If you are breathing too slow there is a low rate of absorption, if you are breathing too fast there is a low rate of absorption. Respiration rate of about 12 per minute had the HIGHEST rate of absorption.
-Overlapping the vest while using nebulized medications does not appear to affect the absorption of the nebulized medication. Source: sittes 2006 study
-A Bipap (not C pap) machine can help with breathing, and you can also attach a nebulizer to this machine. The delivery rate is actually HIGHLY increased and delivery time decreased with a bipap versus a nebulizer, however the cleaning of the Bipap machine is quite extensive.
-Some of the faster nebulizers are
E Flow by PARI
Aeronebgo by AEROGEN
MicroAir by OMRON
Downside of these machines is that they use a "vibrating mesh plate" that often gets clogged with particles. The solution is to frequently order new mesh plates. Might not be cost effective if your ins. doesn't cover new mesh plates as often as you need them.
-There are over 1601 KNOWN CF mutations (WOW!!!)
Ok, I thought I'd share some info from the notes that I took from the CFRI conference.
-Therapies for CF are starting to be based on your CF muation, so KNOW your mutation. If you haven't been genetically tested, it is highly recommended
-For young boys with CF, studies show that 14-17 is the ideal time for (preferably) a parent to share the possibility of infertility, and to have a semen analysis done
-Only 10% of CFers participate in research studies, we need MUCH more than 10% to make an impact.
www.cff.org/research/ClinicalReserach/find/
<a target=_blank class=ftalternatingbarlinklarge href="http://clinicaltrials.gov
">http://clinicaltrials.gov
</a> www.Cfcenter.stanford.edu
-Have your delivery system (nebulizer...) cleaned and serviced regularly
-Pulmosyme improves sputum (thins) at approx. 30 minutes after administration. Therefore it is recommended that you either 1. vest first, wait 30min then pulmozyme OR 2. vest, then immediately follow with pulmozyme (this 2nd method will get the pulmozyme deeper into the lungs. Either method 1. or 2. is effective.
-DO NOT mix pulmozyme with any other medication, preferable it should have it's own nebulizer chamber
-Don't nebulize the "dead volume" (aka residual). For example, in a 2.5ml dose, you are only suppose to get 2ml, the .5 is "extra" to compensate for the dead volume. A number of people waste time shaking the chamber, tapping or flicking it to get the extra residual out. This increases your therapy time by approx.8-10 minutes.
Another example is if you are rx'd 4ml of HTS, you are suppose to be getting 3.5ml and .5 would be the residual. Studies have shown that if you increase the amount you put in the neb. chamber to 4.5ml instead of 4, you can actually decrease your neb. time from 18 minutes (for 4ml) to 11 minutes (for 4.5ml) This is only going to work for "non-metered" medications though. It is not worth the cost to waste and extra vial of a pre-metered medication.
-YOUR respiratory rate can affect the amount of medication your lungs recieve. If you are breathing too slow there is a low rate of absorption, if you are breathing too fast there is a low rate of absorption. Respiration rate of about 12 per minute had the HIGHEST rate of absorption.
-Overlapping the vest while using nebulized medications does not appear to affect the absorption of the nebulized medication. Source: sittes 2006 study
-A Bipap (not C pap) machine can help with breathing, and you can also attach a nebulizer to this machine. The delivery rate is actually HIGHLY increased and delivery time decreased with a bipap versus a nebulizer, however the cleaning of the Bipap machine is quite extensive.
-Some of the faster nebulizers are
E Flow by PARI
Aeronebgo by AEROGEN
MicroAir by OMRON
Downside of these machines is that they use a "vibrating mesh plate" that often gets clogged with particles. The solution is to frequently order new mesh plates. Might not be cost effective if your ins. doesn't cover new mesh plates as often as you need them.
-There are over 1601 KNOWN CF mutations (WOW!!!)
CFRI Conference
Ok, I thought I'd share some info from the notes that I took from the CFRI conference.
-Therapies for CF are starting to be based on your CF muation, so KNOW your mutation. If you haven't been genetically tested, it is highly recommended
-For young boys with CF, studies show that 14-17 is the ideal time for (preferably) a parent to share the possibility of infertility, and to have a semen analysis done
-Only 10% of CFers participate in research studies, we need MUCH more than 10% to make an impact.
www.cff.org/research/ClinicalReserach/find/
<a target=_blank class=ftalternatingbarlinklarge href="http://clinicaltrials.gov
">http://clinicaltrials.gov
</a> www.Cfcenter.stanford.edu
-Have your delivery system (nebulizer...) cleaned and serviced regularly
-Pulmosyme improves sputum (thins) at approx. 30 minutes after administration. Therefore it is recommended that you either 1. vest first, wait 30min then pulmozyme OR 2. vest, then immediately follow with pulmozyme (this 2nd method will get the pulmozyme deeper into the lungs. Either method 1. or 2. is effective.
-DO NOT mix pulmozyme with any other medication, preferable it should have it's own nebulizer chamber
-Don't nebulize the "dead volume" (aka residual). For example, in a 2.5ml dose, you are only suppose to get 2ml, the .5 is "extra" to compensate for the dead volume. A number of people waste time shaking the chamber, tapping or flicking it to get the extra residual out. This increases your therapy time by approx.8-10 minutes.
Another example is if you are rx'd 4ml of HTS, you are suppose to be getting 3.5ml and .5 would be the residual. Studies have shown that if you increase the amount you put in the neb. chamber to 4.5ml instead of 4, you can actually decrease your neb. time from 18 minutes (for 4ml) to 11 minutes (for 4.5ml) This is only going to work for "non-metered" medications though. It is not worth the cost to waste and extra vial of a pre-metered medication.
-YOUR respiratory rate can affect the amount of medication your lungs recieve. If you are breathing too slow there is a low rate of absorption, if you are breathing too fast there is a low rate of absorption. Respiration rate of about 12 per minute had the HIGHEST rate of absorption.
-Overlapping the vest while using nebulized medications does not appear to affect the absorption of the nebulized medication. Source: sittes 2006 study
-A Bipap (not C pap) machine can help with breathing, and you can also attach a nebulizer to this machine. The delivery rate is actually HIGHLY increased and delivery time decreased with a bipap versus a nebulizer, however the cleaning of the Bipap machine is quite extensive.
-Some of the faster nebulizers are
E Flow by PARI
Aeronebgo by AEROGEN
MicroAir by OMRON
Downside of these machines is that they use a "vibrating mesh plate" that often gets clogged with particles. The solution is to frequently order new mesh plates. Might not be cost effective if your ins. doesn't cover new mesh plates as often as you need them.
-There are over 1601 KNOWN CF mutations (WOW!!!)
Ok, I thought I'd share some info from the notes that I took from the CFRI conference.
-Therapies for CF are starting to be based on your CF muation, so KNOW your mutation. If you haven't been genetically tested, it is highly recommended
-For young boys with CF, studies show that 14-17 is the ideal time for (preferably) a parent to share the possibility of infertility, and to have a semen analysis done
-Only 10% of CFers participate in research studies, we need MUCH more than 10% to make an impact.
www.cff.org/research/ClinicalReserach/find/
<a target=_blank class=ftalternatingbarlinklarge href="http://clinicaltrials.gov
">http://clinicaltrials.gov
</a> www.Cfcenter.stanford.edu
-Have your delivery system (nebulizer...) cleaned and serviced regularly
-Pulmosyme improves sputum (thins) at approx. 30 minutes after administration. Therefore it is recommended that you either 1. vest first, wait 30min then pulmozyme OR 2. vest, then immediately follow with pulmozyme (this 2nd method will get the pulmozyme deeper into the lungs. Either method 1. or 2. is effective.
-DO NOT mix pulmozyme with any other medication, preferable it should have it's own nebulizer chamber
-Don't nebulize the "dead volume" (aka residual). For example, in a 2.5ml dose, you are only suppose to get 2ml, the .5 is "extra" to compensate for the dead volume. A number of people waste time shaking the chamber, tapping or flicking it to get the extra residual out. This increases your therapy time by approx.8-10 minutes.
Another example is if you are rx'd 4ml of HTS, you are suppose to be getting 3.5ml and .5 would be the residual. Studies have shown that if you increase the amount you put in the neb. chamber to 4.5ml instead of 4, you can actually decrease your neb. time from 18 minutes (for 4ml) to 11 minutes (for 4.5ml) This is only going to work for "non-metered" medications though. It is not worth the cost to waste and extra vial of a pre-metered medication.
-YOUR respiratory rate can affect the amount of medication your lungs recieve. If you are breathing too slow there is a low rate of absorption, if you are breathing too fast there is a low rate of absorption. Respiration rate of about 12 per minute had the HIGHEST rate of absorption.
-Overlapping the vest while using nebulized medications does not appear to affect the absorption of the nebulized medication. Source: sittes 2006 study
-A Bipap (not C pap) machine can help with breathing, and you can also attach a nebulizer to this machine. The delivery rate is actually HIGHLY increased and delivery time decreased with a bipap versus a nebulizer, however the cleaning of the Bipap machine is quite extensive.
-Some of the faster nebulizers are
E Flow by PARI
Aeronebgo by AEROGEN
MicroAir by OMRON
Downside of these machines is that they use a "vibrating mesh plate" that often gets clogged with particles. The solution is to frequently order new mesh plates. Might not be cost effective if your ins. doesn't cover new mesh plates as often as you need them.
-There are over 1601 KNOWN CF mutations (WOW!!!)
CFRI Conference
Ok, I thought I'd share some info from the notes that I took from the CFRI conference.
-Therapies for CF are starting to be based on your CF muation, so KNOW your mutation. If you haven't been genetically tested, it is highly recommended
-For young boys with CF, studies show that 14-17 is the ideal time for (preferably) a parent to share the possibility of infertility, and to have a semen analysis done
-Only 10% of CFers participate in research studies, we need MUCH more than 10% to make an impact.
www.cff.org/research/ClinicalReserach/find/
<a target=_blank class=ftalternatingbarlinklarge href="http://clinicaltrials.gov
">http://clinicaltrials.gov
</a> www.Cfcenter.stanford.edu
-Have your delivery system (nebulizer...) cleaned and serviced regularly
-Pulmosyme improves sputum (thins) at approx. 30 minutes after administration. Therefore it is recommended that you either 1. vest first, wait 30min then pulmozyme OR 2. vest, then immediately follow with pulmozyme (this 2nd method will get the pulmozyme deeper into the lungs. Either method 1. or 2. is effective.
-DO NOT mix pulmozyme with any other medication, preferable it should have it's own nebulizer chamber
-Don't nebulize the "dead volume" (aka residual). For example, in a 2.5ml dose, you are only suppose to get 2ml, the .5 is "extra" to compensate for the dead volume. A number of people waste time shaking the chamber, tapping or flicking it to get the extra residual out. This increases your therapy time by approx.8-10 minutes.
Another example is if you are rx'd 4ml of HTS, you are suppose to be getting 3.5ml and .5 would be the residual. Studies have shown that if you increase the amount you put in the neb. chamber to 4.5ml instead of 4, you can actually decrease your neb. time from 18 minutes (for 4ml) to 11 minutes (for 4.5ml) This is only going to work for "non-metered" medications though. It is not worth the cost to waste and extra vial of a pre-metered medication.
-YOUR respiratory rate can affect the amount of medication your lungs recieve. If you are breathing too slow there is a low rate of absorption, if you are breathing too fast there is a low rate of absorption. Respiration rate of about 12 per minute had the HIGHEST rate of absorption.
-Overlapping the vest while using nebulized medications does not appear to affect the absorption of the nebulized medication. Source: sittes 2006 study
-A Bipap (not C pap) machine can help with breathing, and you can also attach a nebulizer to this machine. The delivery rate is actually HIGHLY increased and delivery time decreased with a bipap versus a nebulizer, however the cleaning of the Bipap machine is quite extensive.
-Some of the faster nebulizers are
E Flow by PARI
Aeronebgo by AEROGEN
MicroAir by OMRON
Downside of these machines is that they use a "vibrating mesh plate" that often gets clogged with particles. The solution is to frequently order new mesh plates. Might not be cost effective if your ins. doesn't cover new mesh plates as often as you need them.
-There are over 1601 KNOWN CF mutations (WOW!!!)
Ok, I thought I'd share some info from the notes that I took from the CFRI conference.
-Therapies for CF are starting to be based on your CF muation, so KNOW your mutation. If you haven't been genetically tested, it is highly recommended
-For young boys with CF, studies show that 14-17 is the ideal time for (preferably) a parent to share the possibility of infertility, and to have a semen analysis done
-Only 10% of CFers participate in research studies, we need MUCH more than 10% to make an impact.
www.cff.org/research/ClinicalReserach/find/
<a target=_blank class=ftalternatingbarlinklarge href="http://clinicaltrials.gov
">http://clinicaltrials.gov
</a> www.Cfcenter.stanford.edu
-Have your delivery system (nebulizer...) cleaned and serviced regularly
-Pulmosyme improves sputum (thins) at approx. 30 minutes after administration. Therefore it is recommended that you either 1. vest first, wait 30min then pulmozyme OR 2. vest, then immediately follow with pulmozyme (this 2nd method will get the pulmozyme deeper into the lungs. Either method 1. or 2. is effective.
-DO NOT mix pulmozyme with any other medication, preferable it should have it's own nebulizer chamber
-Don't nebulize the "dead volume" (aka residual). For example, in a 2.5ml dose, you are only suppose to get 2ml, the .5 is "extra" to compensate for the dead volume. A number of people waste time shaking the chamber, tapping or flicking it to get the extra residual out. This increases your therapy time by approx.8-10 minutes.
Another example is if you are rx'd 4ml of HTS, you are suppose to be getting 3.5ml and .5 would be the residual. Studies have shown that if you increase the amount you put in the neb. chamber to 4.5ml instead of 4, you can actually decrease your neb. time from 18 minutes (for 4ml) to 11 minutes (for 4.5ml) This is only going to work for "non-metered" medications though. It is not worth the cost to waste and extra vial of a pre-metered medication.
-YOUR respiratory rate can affect the amount of medication your lungs recieve. If you are breathing too slow there is a low rate of absorption, if you are breathing too fast there is a low rate of absorption. Respiration rate of about 12 per minute had the HIGHEST rate of absorption.
-Overlapping the vest while using nebulized medications does not appear to affect the absorption of the nebulized medication. Source: sittes 2006 study
-A Bipap (not C pap) machine can help with breathing, and you can also attach a nebulizer to this machine. The delivery rate is actually HIGHLY increased and delivery time decreased with a bipap versus a nebulizer, however the cleaning of the Bipap machine is quite extensive.
-Some of the faster nebulizers are
E Flow by PARI
Aeronebgo by AEROGEN
MicroAir by OMRON
Downside of these machines is that they use a "vibrating mesh plate" that often gets clogged with particles. The solution is to frequently order new mesh plates. Might not be cost effective if your ins. doesn't cover new mesh plates as often as you need them.
-There are over 1601 KNOWN CF mutations (WOW!!!)
CFRI Conference
Ok, I thought I'd share some info from the notes that I took from the CFRI conference.
<br />
<br />-Therapies for CF are starting to be based on your CF muation, so KNOW your mutation. If you haven't been genetically tested, it is highly recommended
<br />
<br />-For young boys with CF, studies show that 14-17 is the ideal time for (preferably) a parent to share the possibility of infertility, and to have a semen analysis done
<br />
<br />-Only 10% of CFers participate in research studies, we need MUCH more than 10% to make an impact.
<br /> www.cff.org/research/ClinicalReserach/find/
<br /> <a target=_blank class=ftalternatingbarlinklarge href="http://clinicaltrials.gov
">http://clinicaltrials.gov
</a><br /> www.Cfcenter.stanford.edu
<br />-Have your delivery system (nebulizer...) cleaned and serviced regularly
<br />-Pulmosyme improves sputum (thins) at approx. 30 minutes after administration. Therefore it is recommended that you either 1. vest first, wait 30min then pulmozyme OR 2. vest, then immediately follow with pulmozyme (this 2nd method will get the pulmozyme deeper into the lungs. Either method 1. or 2. is effective.
<br />
<br />-DO NOT mix pulmozyme with any other medication, preferable it should have it's own nebulizer chamber
<br />
<br />-Don't nebulize the "dead volume" (aka residual). For example, in a 2.5ml dose, you are only suppose to get 2ml, the .5 is "extra" to compensate for the dead volume. A number of people waste time shaking the chamber, tapping or flicking it to get the extra residual out. This increases your therapy time by approx.8-10 minutes.
<br />Another example is if you are rx'd 4ml of HTS, you are suppose to be getting 3.5ml and .5 would be the residual. Studies have shown that if you increase the amount you put in the neb. chamber to 4.5ml instead of 4, you can actually decrease your neb. time from 18 minutes (for 4ml) to 11 minutes (for 4.5ml) This is only going to work for "non-metered" medications though. It is not worth the cost to waste and extra vial of a pre-metered medication.
<br />
<br />-YOUR respiratory rate can affect the amount of medication your lungs recieve. If you are breathing too slow there is a low rate of absorption, if you are breathing too fast there is a low rate of absorption. Respiration rate of about 12 per minute had the HIGHEST rate of absorption.
<br />
<br />-Overlapping the vest while using nebulized medications does not appear to affect the absorption of the nebulized medication. Source: sittes 2006 study
<br />
<br />-A Bipap (not C pap) machine can help with breathing, and you can also attach a nebulizer to this machine. The delivery rate is actually HIGHLY increased and delivery time decreased with a bipap versus a nebulizer, however the cleaning of the Bipap machine is quite extensive.
<br />
<br />-Some of the faster nebulizers are
<br /> E Flow by PARI
<br /> Aeronebgo by AEROGEN
<br /> MicroAir by OMRON
<br />Downside of these machines is that they use a "vibrating mesh plate" that often gets clogged with particles. The solution is to frequently order new mesh plates. Might not be cost effective if your ins. doesn't cover new mesh plates as often as you need them.
<br />
<br />-There are over 1601 KNOWN CF mutations (WOW!!!)
<br />
<br />
Ok, I thought I'd share some info from the notes that I took from the CFRI conference.
<br />
<br />-Therapies for CF are starting to be based on your CF muation, so KNOW your mutation. If you haven't been genetically tested, it is highly recommended
<br />
<br />-For young boys with CF, studies show that 14-17 is the ideal time for (preferably) a parent to share the possibility of infertility, and to have a semen analysis done
<br />
<br />-Only 10% of CFers participate in research studies, we need MUCH more than 10% to make an impact.
<br /> www.cff.org/research/ClinicalReserach/find/
<br /> <a target=_blank class=ftalternatingbarlinklarge href="http://clinicaltrials.gov
">http://clinicaltrials.gov
</a><br /> www.Cfcenter.stanford.edu
<br />-Have your delivery system (nebulizer...) cleaned and serviced regularly
<br />-Pulmosyme improves sputum (thins) at approx. 30 minutes after administration. Therefore it is recommended that you either 1. vest first, wait 30min then pulmozyme OR 2. vest, then immediately follow with pulmozyme (this 2nd method will get the pulmozyme deeper into the lungs. Either method 1. or 2. is effective.
<br />
<br />-DO NOT mix pulmozyme with any other medication, preferable it should have it's own nebulizer chamber
<br />
<br />-Don't nebulize the "dead volume" (aka residual). For example, in a 2.5ml dose, you are only suppose to get 2ml, the .5 is "extra" to compensate for the dead volume. A number of people waste time shaking the chamber, tapping or flicking it to get the extra residual out. This increases your therapy time by approx.8-10 minutes.
<br />Another example is if you are rx'd 4ml of HTS, you are suppose to be getting 3.5ml and .5 would be the residual. Studies have shown that if you increase the amount you put in the neb. chamber to 4.5ml instead of 4, you can actually decrease your neb. time from 18 minutes (for 4ml) to 11 minutes (for 4.5ml) This is only going to work for "non-metered" medications though. It is not worth the cost to waste and extra vial of a pre-metered medication.
<br />
<br />-YOUR respiratory rate can affect the amount of medication your lungs recieve. If you are breathing too slow there is a low rate of absorption, if you are breathing too fast there is a low rate of absorption. Respiration rate of about 12 per minute had the HIGHEST rate of absorption.
<br />
<br />-Overlapping the vest while using nebulized medications does not appear to affect the absorption of the nebulized medication. Source: sittes 2006 study
<br />
<br />-A Bipap (not C pap) machine can help with breathing, and you can also attach a nebulizer to this machine. The delivery rate is actually HIGHLY increased and delivery time decreased with a bipap versus a nebulizer, however the cleaning of the Bipap machine is quite extensive.
<br />
<br />-Some of the faster nebulizers are
<br /> E Flow by PARI
<br /> Aeronebgo by AEROGEN
<br /> MicroAir by OMRON
<br />Downside of these machines is that they use a "vibrating mesh plate" that often gets clogged with particles. The solution is to frequently order new mesh plates. Might not be cost effective if your ins. doesn't cover new mesh plates as often as you need them.
<br />
<br />-There are over 1601 KNOWN CF mutations (WOW!!!)
<br />
<br />
C
Cherylwithone
Guest
CFRI Conference
That's alot of helpful information. Thanks for posting it.
Cheryl mom to Malora 15 w/cf
That's alot of helpful information. Thanks for posting it.
Cheryl mom to Malora 15 w/cf
C
Cherylwithone
Guest
CFRI Conference
That's alot of helpful information. Thanks for posting it.
Cheryl mom to Malora 15 w/cf
That's alot of helpful information. Thanks for posting it.
Cheryl mom to Malora 15 w/cf
C
Cherylwithone
Guest
CFRI Conference
That's alot of helpful information. Thanks for posting it.
Cheryl mom to Malora 15 w/cf
That's alot of helpful information. Thanks for posting it.
Cheryl mom to Malora 15 w/cf
C
Cherylwithone
Guest
CFRI Conference
That's alot of helpful information. Thanks for posting it.
Cheryl mom to Malora 15 w/cf
That's alot of helpful information. Thanks for posting it.
Cheryl mom to Malora 15 w/cf
C
Cherylwithone
Guest
CFRI Conference
That's alot of helpful information. Thanks for posting it.
<br />
<br />Cheryl mom to Malora 15 w/cf
That's alot of helpful information. Thanks for posting it.
<br />
<br />Cheryl mom to Malora 15 w/cf