What's new
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

Trouble with Helios O2

L

luke

Guest
Sonia,

They way the pulse dose systems work is the unit has to be able to "feel" you inhale...so if something is blocking that path then it will not work. Easy answer, take an extra cannula and when 1 clogs use the other. I can ask the PB rep here if he knows a way other than that but in the interim that is what I would do.

I am glad to hear your gym sessions are going well...congrats!
 
L

luke

Guest
Sonia,

They way the pulse dose systems work is the unit has to be able to "feel" you inhale...so if something is blocking that path then it will not work. Easy answer, take an extra cannula and when 1 clogs use the other. I can ask the PB rep here if he knows a way other than that but in the interim that is what I would do.

I am glad to hear your gym sessions are going well...congrats!
 
L

luke

Guest
Sonia,

They way the pulse dose systems work is the unit has to be able to "feel" you inhale...so if something is blocking that path then it will not work. Easy answer, take an extra cannula and when 1 clogs use the other. I can ask the PB rep here if he knows a way other than that but in the interim that is what I would do.

I am glad to hear your gym sessions are going well...congrats!
 
L

luke

Guest
Sonia,

They way the pulse dose systems work is the unit has to be able to "feel" you inhale...so if something is blocking that path then it will not work. Easy answer, take an extra cannula and when 1 clogs use the other. I can ask the PB rep here if he knows a way other than that but in the interim that is what I would do.

I am glad to hear your gym sessions are going well...congrats!
 
L

luke

Guest
Sonia,

They way the pulse dose systems work is the unit has to be able to "feel" you inhale...so if something is blocking that path then it will not work. Easy answer, take an extra cannula and when 1 clogs use the other. I can ask the PB rep here if he knows a way other than that but in the interim that is what I would do.

I am glad to hear your gym sessions are going well...congrats!
 

LisaV

New member
There are 2 Helios systems: the Plus and the Marathon (see this for a discussion of them all <a target=_blank class=ftalternatingbarlinklarge href="http://www.puritanbennett.com/_Catalog/PDF/Product/HELiOS_FamilyBrochure.pdf">http://www.puritanbennett.com/...iOS_FamilyBrochure.pdf</a> ) . Only the newer Helios Marathon <a target=_blank class=ftalternatingbarlinklarge href="http://www.puritanbennett.com/prod/product.aspx?id=278">http://www.puritanbennett.com/prod/product.aspx?id=278</a> which has the option of using on continuous flow up to 2 (I believe).

As others have said, if you are not on continuous, but instead on the typical "on demand" then it will only give you oxygen after it feels you exhale through your nose. If you are not getting that puff it could mean that that part of the cannula is blocked or it could mean that you are breathing through your mouth and not your nose.
 

LisaV

New member
There are 2 Helios systems: the Plus and the Marathon (see this for a discussion of them all <a target=_blank class=ftalternatingbarlinklarge href="http://www.puritanbennett.com/_Catalog/PDF/Product/HELiOS_FamilyBrochure.pdf">http://www.puritanbennett.com/...iOS_FamilyBrochure.pdf</a> ) . Only the newer Helios Marathon <a target=_blank class=ftalternatingbarlinklarge href="http://www.puritanbennett.com/prod/product.aspx?id=278">http://www.puritanbennett.com/prod/product.aspx?id=278</a> which has the option of using on continuous flow up to 2 (I believe).

As others have said, if you are not on continuous, but instead on the typical "on demand" then it will only give you oxygen after it feels you exhale through your nose. If you are not getting that puff it could mean that that part of the cannula is blocked or it could mean that you are breathing through your mouth and not your nose.
 

LisaV

New member
There are 2 Helios systems: the Plus and the Marathon (see this for a discussion of them all <a target=_blank class=ftalternatingbarlinklarge href="http://www.puritanbennett.com/_Catalog/PDF/Product/HELiOS_FamilyBrochure.pdf">http://www.puritanbennett.com/...iOS_FamilyBrochure.pdf</a> ) . Only the newer Helios Marathon <a target=_blank class=ftalternatingbarlinklarge href="http://www.puritanbennett.com/prod/product.aspx?id=278">http://www.puritanbennett.com/prod/product.aspx?id=278</a> which has the option of using on continuous flow up to 2 (I believe).

As others have said, if you are not on continuous, but instead on the typical "on demand" then it will only give you oxygen after it feels you exhale through your nose. If you are not getting that puff it could mean that that part of the cannula is blocked or it could mean that you are breathing through your mouth and not your nose.
 

LisaV

New member
There are 2 Helios systems: the Plus and the Marathon (see this for a discussion of them all <a target=_blank class=ftalternatingbarlinklarge href="http://www.puritanbennett.com/_Catalog/PDF/Product/HELiOS_FamilyBrochure.pdf">http://www.puritanbennett.com/...iOS_FamilyBrochure.pdf</a> ) . Only the newer Helios Marathon <a target=_blank class=ftalternatingbarlinklarge href="http://www.puritanbennett.com/prod/product.aspx?id=278">http://www.puritanbennett.com/prod/product.aspx?id=278</a> which has the option of using on continuous flow up to 2 (I believe).

As others have said, if you are not on continuous, but instead on the typical "on demand" then it will only give you oxygen after it feels you exhale through your nose. If you are not getting that puff it could mean that that part of the cannula is blocked or it could mean that you are breathing through your mouth and not your nose.
 

LisaV

New member
There are 2 Helios systems: the Plus and the Marathon (see this for a discussion of them all <a target=_blank class=ftalternatingbarlinklarge href="http://www.puritanbennett.com/_Catalog/PDF/Product/HELiOS_FamilyBrochure.pdf">http://www.puritanbennett.com/...iOS_FamilyBrochure.pdf</a> ) . Only the newer Helios Marathon <a target=_blank class=ftalternatingbarlinklarge href="http://www.puritanbennett.com/prod/product.aspx?id=278">http://www.puritanbennett.com/prod/product.aspx?id=278</a> which has the option of using on continuous flow up to 2 (I believe).

As others have said, if you are not on continuous, but instead on the typical "on demand" then it will only give you oxygen after it feels you exhale through your nose. If you are not getting that puff it could mean that that part of the cannula is blocked or it could mean that you are breathing through your mouth and not your nose.
 

oldtimer1959

New member
I just gave up my Helios daily use in lieu of the AirSep O2 concentrator - it's about the size of the 'butt bag' helios. So far my only gripes are that there is no pocket for the cannula when you aren't using the system (it's only a pulse system, you have to convert to a regular concetrator at night) and that it's carry case is a shoulder bag, not a backpack or butt bag - but I can fix that with by making a custom bag when I get a chance. In the meantime I look like Spock carrying a tricorder - and the good Lord gave me plenty up front, so it makes me a bit self concisious.

As far as the freeze ups - that is one reason I gave mine up. I'm not real althetic at this point in my life, but the constant freeze ups was driving me crazy.

This little system is pretty expensive but my insurance did get it - if you have any insurance that gets you a case manager who handles ALL your needs, I'd encourage you to try and get one of these. If you don't have insurance that will get you one, I found it on several websites - the one that seemed most reasonable was Amanda Medical Inc. @ 1-800-828-4188. I spoke with Jeremy. They are an authorized dealer & charge $4,500.00 with case, charger, cords, AC adapter, car chargers & battery belt; Inc S/H. I also gave this info to my case manager becasue Apria (my approved provider) wanted to charge nearly $8,000 for the system! It came via Apria but they had to go for a lesser rate ($4,800). Remember we are our best friends and we are the consumers! My next step will be to get extra charging stations so I'm not running aroune the house every morning packing chargers to go to work.....

But so far I LOVE THIS SYSTEM.

Oh, did I mention it's FAA certified and MOST airlines I've priced so far allow it as carry-on and for use on board....except United (BOYCOTT with me please!). That was part of the beauty of getting this - I have 3 business trips this fall and am flying for all of them....and at $100 a leg or forced rental of a certified concentrator (at $300/wk) I would have gone broke (er) for sure!!!!

If you can't get this accomplished - I'd almost consider asking for a back up gaseous tank and regulator (mine came with a backpack) and add a velcro belt strap if needed so it doesn't bounce when you run (or if using a treadmill get a long tubing). My particular health club was even willing to let me keep a long tubing there in the managers office without charging me for a locker. Then you could set the tank on the floor and treadmill like that.

Blessings everyone!

Mary

I'm looking into making a back-pack style bag.....but I have only had this a week and have been on vacation....
 

oldtimer1959

New member
I just gave up my Helios daily use in lieu of the AirSep O2 concentrator - it's about the size of the 'butt bag' helios. So far my only gripes are that there is no pocket for the cannula when you aren't using the system (it's only a pulse system, you have to convert to a regular concetrator at night) and that it's carry case is a shoulder bag, not a backpack or butt bag - but I can fix that with by making a custom bag when I get a chance. In the meantime I look like Spock carrying a tricorder - and the good Lord gave me plenty up front, so it makes me a bit self concisious.

As far as the freeze ups - that is one reason I gave mine up. I'm not real althetic at this point in my life, but the constant freeze ups was driving me crazy.

This little system is pretty expensive but my insurance did get it - if you have any insurance that gets you a case manager who handles ALL your needs, I'd encourage you to try and get one of these. If you don't have insurance that will get you one, I found it on several websites - the one that seemed most reasonable was Amanda Medical Inc. @ 1-800-828-4188. I spoke with Jeremy. They are an authorized dealer & charge $4,500.00 with case, charger, cords, AC adapter, car chargers & battery belt; Inc S/H. I also gave this info to my case manager becasue Apria (my approved provider) wanted to charge nearly $8,000 for the system! It came via Apria but they had to go for a lesser rate ($4,800). Remember we are our best friends and we are the consumers! My next step will be to get extra charging stations so I'm not running aroune the house every morning packing chargers to go to work.....

But so far I LOVE THIS SYSTEM.

Oh, did I mention it's FAA certified and MOST airlines I've priced so far allow it as carry-on and for use on board....except United (BOYCOTT with me please!). That was part of the beauty of getting this - I have 3 business trips this fall and am flying for all of them....and at $100 a leg or forced rental of a certified concentrator (at $300/wk) I would have gone broke (er) for sure!!!!

If you can't get this accomplished - I'd almost consider asking for a back up gaseous tank and regulator (mine came with a backpack) and add a velcro belt strap if needed so it doesn't bounce when you run (or if using a treadmill get a long tubing). My particular health club was even willing to let me keep a long tubing there in the managers office without charging me for a locker. Then you could set the tank on the floor and treadmill like that.

Blessings everyone!

Mary

I'm looking into making a back-pack style bag.....but I have only had this a week and have been on vacation....
 

oldtimer1959

New member
I just gave up my Helios daily use in lieu of the AirSep O2 concentrator - it's about the size of the 'butt bag' helios. So far my only gripes are that there is no pocket for the cannula when you aren't using the system (it's only a pulse system, you have to convert to a regular concetrator at night) and that it's carry case is a shoulder bag, not a backpack or butt bag - but I can fix that with by making a custom bag when I get a chance. In the meantime I look like Spock carrying a tricorder - and the good Lord gave me plenty up front, so it makes me a bit self concisious.

As far as the freeze ups - that is one reason I gave mine up. I'm not real althetic at this point in my life, but the constant freeze ups was driving me crazy.

This little system is pretty expensive but my insurance did get it - if you have any insurance that gets you a case manager who handles ALL your needs, I'd encourage you to try and get one of these. If you don't have insurance that will get you one, I found it on several websites - the one that seemed most reasonable was Amanda Medical Inc. @ 1-800-828-4188. I spoke with Jeremy. They are an authorized dealer & charge $4,500.00 with case, charger, cords, AC adapter, car chargers & battery belt; Inc S/H. I also gave this info to my case manager becasue Apria (my approved provider) wanted to charge nearly $8,000 for the system! It came via Apria but they had to go for a lesser rate ($4,800). Remember we are our best friends and we are the consumers! My next step will be to get extra charging stations so I'm not running aroune the house every morning packing chargers to go to work.....

But so far I LOVE THIS SYSTEM.

Oh, did I mention it's FAA certified and MOST airlines I've priced so far allow it as carry-on and for use on board....except United (BOYCOTT with me please!). That was part of the beauty of getting this - I have 3 business trips this fall and am flying for all of them....and at $100 a leg or forced rental of a certified concentrator (at $300/wk) I would have gone broke (er) for sure!!!!

If you can't get this accomplished - I'd almost consider asking for a back up gaseous tank and regulator (mine came with a backpack) and add a velcro belt strap if needed so it doesn't bounce when you run (or if using a treadmill get a long tubing). My particular health club was even willing to let me keep a long tubing there in the managers office without charging me for a locker. Then you could set the tank on the floor and treadmill like that.

Blessings everyone!

Mary

I'm looking into making a back-pack style bag.....but I have only had this a week and have been on vacation....
 

oldtimer1959

New member
I just gave up my Helios daily use in lieu of the AirSep O2 concentrator - it's about the size of the 'butt bag' helios. So far my only gripes are that there is no pocket for the cannula when you aren't using the system (it's only a pulse system, you have to convert to a regular concetrator at night) and that it's carry case is a shoulder bag, not a backpack or butt bag - but I can fix that with by making a custom bag when I get a chance. In the meantime I look like Spock carrying a tricorder - and the good Lord gave me plenty up front, so it makes me a bit self concisious.

As far as the freeze ups - that is one reason I gave mine up. I'm not real althetic at this point in my life, but the constant freeze ups was driving me crazy.

This little system is pretty expensive but my insurance did get it - if you have any insurance that gets you a case manager who handles ALL your needs, I'd encourage you to try and get one of these. If you don't have insurance that will get you one, I found it on several websites - the one that seemed most reasonable was Amanda Medical Inc. @ 1-800-828-4188. I spoke with Jeremy. They are an authorized dealer & charge $4,500.00 with case, charger, cords, AC adapter, car chargers & battery belt; Inc S/H. I also gave this info to my case manager becasue Apria (my approved provider) wanted to charge nearly $8,000 for the system! It came via Apria but they had to go for a lesser rate ($4,800). Remember we are our best friends and we are the consumers! My next step will be to get extra charging stations so I'm not running aroune the house every morning packing chargers to go to work.....

But so far I LOVE THIS SYSTEM.

Oh, did I mention it's FAA certified and MOST airlines I've priced so far allow it as carry-on and for use on board....except United (BOYCOTT with me please!). That was part of the beauty of getting this - I have 3 business trips this fall and am flying for all of them....and at $100 a leg or forced rental of a certified concentrator (at $300/wk) I would have gone broke (er) for sure!!!!

If you can't get this accomplished - I'd almost consider asking for a back up gaseous tank and regulator (mine came with a backpack) and add a velcro belt strap if needed so it doesn't bounce when you run (or if using a treadmill get a long tubing). My particular health club was even willing to let me keep a long tubing there in the managers office without charging me for a locker. Then you could set the tank on the floor and treadmill like that.

Blessings everyone!

Mary

I'm looking into making a back-pack style bag.....but I have only had this a week and have been on vacation....
 

oldtimer1959

New member
I just gave up my Helios daily use in lieu of the AirSep O2 concentrator - it's about the size of the 'butt bag' helios. So far my only gripes are that there is no pocket for the cannula when you aren't using the system (it's only a pulse system, you have to convert to a regular concetrator at night) and that it's carry case is a shoulder bag, not a backpack or butt bag - but I can fix that with by making a custom bag when I get a chance. In the meantime I look like Spock carrying a tricorder - and the good Lord gave me plenty up front, so it makes me a bit self concisious.

As far as the freeze ups - that is one reason I gave mine up. I'm not real althetic at this point in my life, but the constant freeze ups was driving me crazy.

This little system is pretty expensive but my insurance did get it - if you have any insurance that gets you a case manager who handles ALL your needs, I'd encourage you to try and get one of these. If you don't have insurance that will get you one, I found it on several websites - the one that seemed most reasonable was Amanda Medical Inc. @ 1-800-828-4188. I spoke with Jeremy. They are an authorized dealer & charge $4,500.00 with case, charger, cords, AC adapter, car chargers & battery belt; Inc S/H. I also gave this info to my case manager becasue Apria (my approved provider) wanted to charge nearly $8,000 for the system! It came via Apria but they had to go for a lesser rate ($4,800). Remember we are our best friends and we are the consumers! My next step will be to get extra charging stations so I'm not running aroune the house every morning packing chargers to go to work.....

But so far I LOVE THIS SYSTEM.

Oh, did I mention it's FAA certified and MOST airlines I've priced so far allow it as carry-on and for use on board....except United (BOYCOTT with me please!). That was part of the beauty of getting this - I have 3 business trips this fall and am flying for all of them....and at $100 a leg or forced rental of a certified concentrator (at $300/wk) I would have gone broke (er) for sure!!!!

If you can't get this accomplished - I'd almost consider asking for a back up gaseous tank and regulator (mine came with a backpack) and add a velcro belt strap if needed so it doesn't bounce when you run (or if using a treadmill get a long tubing). My particular health club was even willing to let me keep a long tubing there in the managers office without charging me for a locker. Then you could set the tank on the floor and treadmill like that.

Blessings everyone!

Mary

I'm looking into making a back-pack style bag.....but I have only had this a week and have been on vacation....
 

JustDucky

New member
I am wondering if what Lisa said about breathing through your mouth instead of your nose is part of the culprit. I had on demand oxygen and found that I didn't get enough pulses when I exerted myself because I was breathing more through my mouth instead of my nose therefore not triggering the device enough for my needs and my sats suffered. At rest there were no issues as I breathed more through my nose and it pulsed with every breath. Carrying extra tubing is a good idea as Luke suggested.
Marry, I understand your frustration with airlines. They finally approve the portable concentrator for flights and yet United doesn't participate. I flew before the portable concentrators were approved and remember paying those outrageous costs for oxygen. Good luck with your upcoming trips!
Sonia, I hope that things get worked out for you, it is great that you are exercising the way you are...kudos to you! Now to fix that oxygen problem...
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JustDucky

New member
I am wondering if what Lisa said about breathing through your mouth instead of your nose is part of the culprit. I had on demand oxygen and found that I didn't get enough pulses when I exerted myself because I was breathing more through my mouth instead of my nose therefore not triggering the device enough for my needs and my sats suffered. At rest there were no issues as I breathed more through my nose and it pulsed with every breath. Carrying extra tubing is a good idea as Luke suggested.
Marry, I understand your frustration with airlines. They finally approve the portable concentrator for flights and yet United doesn't participate. I flew before the portable concentrators were approved and remember paying those outrageous costs for oxygen. Good luck with your upcoming trips!
Sonia, I hope that things get worked out for you, it is great that you are exercising the way you are...kudos to you! Now to fix that oxygen problem...
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JustDucky

New member
I am wondering if what Lisa said about breathing through your mouth instead of your nose is part of the culprit. I had on demand oxygen and found that I didn't get enough pulses when I exerted myself because I was breathing more through my mouth instead of my nose therefore not triggering the device enough for my needs and my sats suffered. At rest there were no issues as I breathed more through my nose and it pulsed with every breath. Carrying extra tubing is a good idea as Luke suggested.
Marry, I understand your frustration with airlines. They finally approve the portable concentrator for flights and yet United doesn't participate. I flew before the portable concentrators were approved and remember paying those outrageous costs for oxygen. Good luck with your upcoming trips!
Sonia, I hope that things get worked out for you, it is great that you are exercising the way you are...kudos to you! Now to fix that oxygen problem...
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JustDucky

New member
I am wondering if what Lisa said about breathing through your mouth instead of your nose is part of the culprit. I had on demand oxygen and found that I didn't get enough pulses when I exerted myself because I was breathing more through my mouth instead of my nose therefore not triggering the device enough for my needs and my sats suffered. At rest there were no issues as I breathed more through my nose and it pulsed with every breath. Carrying extra tubing is a good idea as Luke suggested.
Marry, I understand your frustration with airlines. They finally approve the portable concentrator for flights and yet United doesn't participate. I flew before the portable concentrators were approved and remember paying those outrageous costs for oxygen. Good luck with your upcoming trips!
Sonia, I hope that things get worked out for you, it is great that you are exercising the way you are...kudos to you! Now to fix that oxygen problem...
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JustDucky

New member
I am wondering if what Lisa said about breathing through your mouth instead of your nose is part of the culprit. I had on demand oxygen and found that I didn't get enough pulses when I exerted myself because I was breathing more through my mouth instead of my nose therefore not triggering the device enough for my needs and my sats suffered. At rest there were no issues as I breathed more through my nose and it pulsed with every breath. Carrying extra tubing is a good idea as Luke suggested.
Marry, I understand your frustration with airlines. They finally approve the portable concentrator for flights and yet United doesn't participate. I flew before the portable concentrators were approved and remember paying those outrageous costs for oxygen. Good luck with your upcoming trips!
Sonia, I hope that things get worked out for you, it is great that you are exercising the way you are...kudos to you! Now to fix that oxygen problem...
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
Top