Re: Differences between a conserver and a pulse dose and can anyone use them?

[Guest guest]

Stefani,

Welcome to the confusing world of oxygen options and choices. It's all very overwhelming but you will get accustomed to all of it faster than you think you will.

You say National Jewish has said that you need 4 liters when you're active whether in or out of the house, correct? That gives you some options to consider. You can use compressed air tanks like a D or an E with either a regulator or a conserver. A regulator gives you continuos flow and the liter per minute can be adjusted. The one I have goes from .5 liters to 15 liters per minute. A conserver is different. It gives you a puff or pulse of oxygen when you inhale and nothing when you are exhaling. The higher the liter flow you have a conserver set at the larger the pulse of oxygen you will get. But be aware the pulse you get is not truly equivalent to the liter flow it's set at. For instance when I am using a conserver I have to set it at 7 liters to be able to do the things I can do on 4 liters continuous.

It's called a conserver because the oxygen in the tank will last much much longer with a conserver than it will with a continuous flow regulator.

I use my conservers all the time but I have to admit it's easier to be active when I'm using continuous flow. I think this has to do with the fact that with continuous flow there is always oxygen in my nasal passages ready to be used as opposed to only when I inhale with a conserver. If I'm coughing, if I'm talking, if my nose is a little stuffy and I'm breathing through my mouth, with continuous flow I'm still getting oxygen and less so with a conserver.

There are different brands of conservers, some are better than others. Some give you oxygen through your entire inhale, those are true 'demand conservers'. That's the kind that I have the easiest time using. They don't 'conserve' as well as pulse conservers because they do give us more oxygen. But I need what I need and this is what works best for me.

As far as Helios goes, there's no reason that I can think of that you couldn't use a Helios Marathon. The Marathon can be switched from pulse to continuous up to 6 liters per minute I believe. Bruce will correct me if I'm wrong.

You don't have to have a specific diagnosis for pulmonary rehab. I would imagine different programs have different requirements but mostly they can decide based on your pft, your 6 minute walk and maybe a cardiac stress test. Your pulmo is being ultra cautious. Has he flat out said no to rehab? Or just no to other treatment like meds and such? So much can info can be gained with an HRCT.... I mean I had a biopsy and I would do the same thing if I had it to do over but I do understand the reluctance. In your case though, the fact that they suspect cellular NSIP... that's usually treated with prednisone and usually pretty effectively. I don't think they can tell cellular nsip from fibrotic nsip without a biopsy but I may be wrong. I know it's a tough decision.

I don't know if any of this mess helps you but let me know if I can do anything else to confuse you. LOL

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, July 16, 2009 8:39:17 PMSubject: Differences between a conserver and a pulse dose and can anyone use them?

Ok. I am so new at this stuff. I keep thinking I am ahead of the game and then there is a new wrinkle. I have a concentrator. My family physician ordered it for me because I could not get in to see a pulmonologist for 2 months. It was never taken away and no one told me to use any more than the 2 liters a night that my family physician suggested as a temporary measure. The insurance company bought it for me but I have never been told what else I might need it for (including the pulmonologist) . 3 years later and National Jewish says I should have a system that delivers 4 liters for work around the house and anytime I go out to shop, walk or exercise. For some reason, National Jewish said the Helios would not be a good idea. They also said I should look at continuous air as opposed to pulse. I go to my medical supplier and they want to know if I have a conserver. I have no idea what it is or if I want one. I have an Ifill system and only a D tank

because they are out of C and B (assume that is the one the size of a wine bottle). I do not like the carry system for the D tank. The strap cuts into my shoulder and have seen some people with "duffle" bag carriers that 'look' like they might work better. What do you guys do with the 7 ft of cannula that is looping all over? Also, are there some unwritten rules about qualifying for pulmonary rehab? I have a new pulmo-dude here in Salt Lake and he is telling me he is not recommending any treatment until I have a VATS done. Does that rule out rehab? How positive do they have to be about a diagnosis? I have a letter from National Jewish that says their 'impression' is that I have cellular NSIP. My original pulmonologist would not go beyond Interstitial Lung Disease. One step forward, two steps back.StefaniILD 2/2006, NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

[Guest guest]

Stefani,

I can't add much more than what Beth wrote, but I will say that my best friend in helping me determine the oxygen flow I need is a portable O2 meter. Your doctors and healthcare members may have an idea of what your oxygen needs may be, but by keeping your own running diary, you can get a much better idea of your needs. I have an Onyx portable O2 meter. By going over what I had written about my oxygen levels at rest, working, walking ect, Dr. Lasky was much better informed as to my needs. If you want more info on these meters, go to www.avweb.com. I use my Onyx O2 every day, and I have confidence that I am within my safe limits of exercise and exertion. Hope this helps.

Jerry/Mississippi/54/IPF/April 05Who believes that hard times help us appreciate the good times even more.

Subject: Re: Differences between a conserver and a pulse dose and can anyone use them?To: Breathe-Support Date: Friday, July 17, 2009, 2:14 AM

Stefani,

Welcome to the confusing world of oxygen options and choices. It's all very overwhelming but you will get accustomed to all of it faster than you think you will.

You say National Jewish has said that you need 4 liters when you're active whether in or out of the house, correct? That gives you some options to consider. You can use compressed air tanks like a D or an E with either a regulator or a conserver. A regulator gives you continuos flow and the liter per minute can be adjusted. The one I have goes from .5 liters to 15 liters per minute. A conserver is different. It gives you a puff or pulse of oxygen when you inhale and nothing when you are exhaling. The higher the liter flow you have a conserver set at the larger the pulse of oxygen you will get. But be aware the pulse you get is not truly equivalent to the liter flow it's set at. For instance when I am using a conserver I have to set it at 7 liters to be able to do the things I can do on 4 liters continuous.

It's called a conserver because the oxygen in the tank will last much much longer with a conserver than it will with a continuous flow regulator.

I use my conservers all the time but I have to admit it's easier to be active when I'm using continuous flow. I think this has to do with the fact that with continuous flow there is always oxygen in my nasal passages ready to be used as opposed to only when I inhale with a conserver. If I'm coughing, if I'm talking, if my nose is a little stuffy and I'm breathing through my mouth, with continuous flow I'm still getting oxygen and less so with a conserver.

There are different brands of conservers, some are better than others. Some give you oxygen through your entire inhale, those are true 'demand conservers'. That's the kind that I have the easiest time using. They don't 'conserve' as well as pulse conservers because they do give us more oxygen. But I need what I need and this is what works best for me.

As far as Helios goes, there's no reason that I can think of that you couldn't use a Helios Marathon. The Marathon can be switched from pulse to continuous up to 6 liters per minute I believe. Bruce will correct me if I'm wrong.

You don't have to have a specific diagnosis for pulmonary rehab. I would imagine different programs have different requirements but mostly they can decide based on your pft, your 6 minute walk and maybe a cardiac stress test. Your pulmo is being ultra cautious. Has he flat out said no to rehab? Or just no to other treatment like meds and such? So much can info can be gained with an HRCT.... I mean I had a biopsy and I would do the same thing if I had it to do over but I do understand the reluctance. In your case though, the fact that they suspect cellular NSIP... that's usually treated with prednisone and usually pretty effectively. I don't think they can tell cellular nsip from fibrotic nsip without a biopsy but I may be wrong. I know it's a tough decision.

I don't know if any of this mess helps you but let me know if I can do anything else to confuse you. LOL

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: sfshaner <sfshaner (AT) gmail (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, July 16, 2009 8:39:17 PMSubject: Differences between a conserver and a pulse dose and can anyone use them?

Ok. I am so new at this stuff. I keep thinking I am ahead of the game and then there is a new wrinkle. I have a concentrator. My family physician ordered it for me because I could not get in to see a pulmonologist for 2 months. It was never taken away and no one told me to use any more than the 2 liters a night that my family physician suggested as a temporary measure. The insurance company bought it for me but I have never been told what else I might need it for (including the pulmonologist) . 3 years later and National Jewish says I should have a system that delivers 4 liters for work around the house and anytime I go out to shop, walk or exercise. For some reason, National Jewish said the Helios would not be a good idea. They also said I should look at continuous air as opposed to pulse. I go to my medical supplier and they want to know if I have a conserver. I have no idea what it is or if I want one. I have an Ifill system and only a D tank

because they are out of C and B (assume that is the one the size of a wine bottle). I do not like the carry system for the D tank. The strap cuts into my shoulder and have seen some people with "duffle" bag carriers that 'look' like they might work better. What do you guys do with the 7 ft of cannula that is looping all over? Also, are there some unwritten rules about qualifying for pulmonary rehab? I have a new pulmo-dude here in Salt Lake and he is telling me he is not recommending any treatment until I have a VATS done. Does that rule out rehab? How positive do they have to be about a diagnosis? I have a letter from National Jewish that says their 'impression' is that I have cellular NSIP. My original pulmonologist would not go beyond Interstitial Lung Disease. One step forward, two steps back.StefaniILD 2/2006, NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea

4/2009

[Guest guest]

Diane/ Beth

I have the Nonin Onyx II oximeter, which will run you now about $300. Other models are under $100 and work on the same blood color principle as the more expensive oximeters your doctor may use. You can take your model in when you go for the 6 mile walk and, mostly for your doctor's benefit, check the portable oximeter you use with theirs. Your doctor should like the idea of you being able to check your own O2 level. I don't recommend my model over another, but it is very small:

Your oxygen supplier can probably get one for youk, but you can get a price range by checking on the internet.

Jerry/Mississippi/54/IPF/April 05Who believes that hard times help us appreciate the good times even more.

Subject: Re: Differences between a conserver and a pulse dose and can anyone use them?To: Breathe-Support Date: Friday, July 17, 2009, 2:14 AM

Stefani,

Welcome to the confusing world of oxygen options and choices. It's all very overwhelming but you will get accustomed to all of it faster than you think you will.

You say National Jewish has said that you need 4 liters when you're active whether in or out of the house, correct? That gives you some options to consider. You can use compressed air tanks like a D or an E with either a regulator or a conserver. A regulator gives you continuos flow and the liter per minute can be adjusted. The one I have goes from .5 liters to 15 liters per minute. A conserver is different. It gives you a puff or pulse of oxygen when you inhale and nothing when you are exhaling. The higher the liter flow you have a conserver set at the larger the pulse of oxygen you will get. But be aware the pulse you get is not truly equivalent to the liter flow it's set at. For instance when I am using a conserver I have to set it at 7 liters to be able to do the things I can do on 4 liters continuous.

It's called a conserver because the oxygen in the tank will last much much longer with a conserver than it will with a continuous flow regulator.

I use my conservers all the time but I have to admit it's easier to be active when I'm using continuous flow. I think this has to do with the fact that with continuous flow there is always oxygen in my nasal passages ready to be used as opposed to only when I inhale with a conserver. If I'm coughing, if I'm talking, if my nose is a little stuffy and I'm breathing through my mouth, with continuous flow I'm still getting oxygen and less so with a conserver.

There are different brands of conservers, some are better than others. Some give you oxygen through your entire inhale, those are true 'demand conservers'. That's the kind that I have the easiest time using. They don't 'conserve' as well as pulse conservers because they do give us more oxygen. But I need what I need and this is what works best for me.

As far as Helios goes, there's no reason that I can think of that you couldn't use a Helios Marathon. The Marathon can be switched from pulse to continuous up to 6 liters per minute I believe. Bruce will correct me if I'm wrong.

You don't have to have a specific diagnosis for pulmonary rehab. I would imagine different programs have different requirements but mostly they can decide based on your pft, your 6 minute walk and maybe a cardiac stress test. Your pulmo is being ultra cautious. Has he flat out said no to rehab? Or just no to other treatment like meds and such? So much can info can be gained with an HRCT.... I mean I had a biopsy and I would do the same thing if I had it to do over but I do understand the reluctance. In your case though, the fact that they suspect cellular NSIP... that's usually treated with prednisone and usually pretty effectively. I don't think they can tell cellular nsip from fibrotic nsip without a biopsy but I may be wrong. I know it's a tough decision.

I don't know if any of this mess helps you but let me know if I can do anything else to confuse you. LOL

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: sfshaner <sfshaner (AT) gmail (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, July 16, 2009 8:39:17 PMSubject: Differences between a conserver and a pulse dose and can anyone use them?

Ok. I am so new at this stuff. I keep thinking I am ahead of the game and then there is a new wrinkle. I have a concentrator. My family physician ordered it for me because I could not get in to see a pulmonologist for 2 months. It was never taken away and no one told me to use any more than the 2 liters a night that my family physician suggested as a temporary measure. The insurance company bought it for me but I have never been told what else I might need it for (including the pulmonologist) . 3 years later and National Jewish says I should have a system that delivers 4 liters for work around the house and anytime I go out to shop, walk or exercise. For some reason, National Jewish said the Helios would not be a good idea. They also said I should look at continuous air as opposed to pulse. I go to my medical supplier and they want to know if I have a conserver. I have no idea what it is or if I want one. I have an Ifill system and only a D tank

because they are out of C and B (assume that is the one the size of a wine bottle). I do not like the carry system for the D tank. The strap cuts into my shoulder and have seen some people with "duffle" bag carriers that 'look' like they might work better. What do you guys do with the 7 ft of cannula that is looping all over? Also, are there some unwritten rules about qualifying for pulmonary rehab? I have a new pulmo-dude here in Salt Lake and he is telling me he is not recommending any treatment until I have a VATS done. Does that rule out rehab? How positive do they have to be about a diagnosis? I have a letter from National Jewish that says their 'impression' is that I have cellular NSIP. My original pulmonologist would not go beyond Interstitial Lung Disease. One step forward, two steps back.StefaniILD 2/2006, NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea

4/2009

[Guest guest]

Jerry, I have the ninon 9500 I have had for almost 5 years now. They work great. I think about all of us have one type or the other of them. They are so very important to all of us. A lot have one from a site for $65.00. they work well too. I am glad you have one and are keeping a check on your saturation. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Diane/ Beth I have the Nonin Onyx II oximeter, which will run you now about $300. Other models are under $100 and work on the same blood color principle as the more expensive oximeters your doctor may use. You can take your model in when you go for the 6 mile walk and, mostly for your doctor's benefit, check the portable oximeter you use with theirs. Your doctor should like the idea of you being able to check your own O2 level. I don't recommend my model over another, but it is very small: Your oxygen supplier can probably get one for youk, but you can get a price range by checking on the internet. Jerry/Mississippi/54/IPF/April 05Who believes that hard times help us appreciate the good times even more. From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Differences between a conserver and a pulse dose and can anyone use them?To: Breathe-Support Date: Friday, July 17, 2009, 2:14 AM Stefani, Welcome to the confusing world of oxygen options and choices. It's all very overwhelming but you will get accustomed to all of it faster than you think you will. You say National Jewish has said that you need 4 liters when you're active whether in or out of the house, correct? That gives you some options to consider. You can use compressed air tanks like a D or an E with either a regulator or a conserver. A regulator gives you continuos flow and the liter per minute can be adjusted. The one I have goes from .5 liters to 15 liters per minute. A conserver is different. It gives you a puff or pulse of oxygen when you inhale and nothing when you are exhaling. The higher the liter flow you have a conserver set at the larger the pulse of oxygen you will get. But be aware the pulse you get is not truly equivalent to the liter flow it's set at. For instance when I am using a conserver I have to set it at 7 liters to be able to do the things I can do on 4 liters continuous. It's called a conserver because the oxygen in the tank will last much much longer with a conserver than it will with a continuous flow regulator. I use my conservers all the time but I have to admit it's easier to be active when I'm using continuous flow. I think this has to do with the fact that with continuous flow there is always oxygen in my nasal passages ready to be used as opposed to only when I inhale with a conserver. If I'm coughing, if I'm talking, if my nose is a little stuffy and I'm breathing through my mouth, with continuous flow I'm still getting oxygen and less so with a conserver. There are different brands of conservers, some are better than others. Some give you oxygen through your entire inhale, those are true 'demand conservers'. That's the kind that I have the easiest time using. They don't 'conserve' as well as pulse conservers because they do give us more oxygen. But I need what I need and this is what works best for me. As far as Helios goes, there's no reason that I can think of that you couldn't use a Helios Marathon. The Marathon can be switched from pulse to continuous up to 6 liters per minute I believe. Bruce will correct me if I'm wrong. You don't have to have a specific diagnosis for pulmonary rehab. I would imagine different programs have different requirements but mostly they can decide based on your pft, your 6 minute walk and maybe a cardiac stress test. Your pulmo is being ultra cautious. Has he flat out said no to rehab? Or just no to other treatment like meds and such? So much can info can be gained with an HRCT.... I mean I had a biopsy and I would do the same thing if I had it to do over but I do understand the reluctance. In your case though, the fact that they suspect cellular NSIP... that's usually treated with prednisone and usually pretty effectively. I don't think they can tell cellular nsip from fibrotic nsip without a biopsy but I may be wrong. I know it's a tough decision. I don't know if any of this mess helps you but let me know if I can do anything else to confuse you. LOL Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: sfshaner <sfshaner (AT) gmail (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, July 16, 2009 8:39:17 PMSubject: Differences between a conserver and a pulse dose and can anyone use them? Ok. I am so new at this stuff. I keep thinking I am ahead of the game and then there is a new wrinkle. I have a concentrator. My family physician ordered it for me because I could not get in to see a pulmonologist for 2 months. It was never taken away and no one told me to use any more than the 2 liters a night that my family physician suggested as a temporary measure. The insurance company bought it for me but I have never been told what else I might need it for (including the pulmonologist) . 3 years later and National Jewish says I should have a system that delivers 4 liters for work around the house and anytime I go out to shop, walk or exercise. For some reason, National Jewish said the Helios would not be a good idea. They also said I should look at continuous air as opposed to pulse. I go to my medical supplier and they want to know if I have a conserver. I have no idea what it is or if I want one. I have an Ifill system and only a D tank because they are out of C and B (assume that is the one the size of a wine bottle). I do not like the carry system for the D tank. The strap cuts into my shoulder and have seen some people with "duffle" bag carriers that 'look' like they might work better. What do you guys do with the 7 ft of cannula that is looping all over? Also, are there some unwritten rules about qualifying for pulmonary rehab? I have a new pulmo-dude here in Salt Lake and he is telling me he is not recommending any treatment until I have a VATS done. Does that rule out rehab? How positive do they have to be about a diagnosis? I have a letter from National Jewish that says their 'impression' is that I have cellular NSIP. My original pulmonologist would not go beyond Interstitial Lung Disease. One step forward, two steps back.StefaniILD 2/2006, NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

[Guest guest]

Stefani

I'll address the Helios comment. For whatever reason your doctor seems

to think you need continuous. The only way to ultimately be sure is

through trial. However, based on your needs of 4 lpm and possible need

for continuous, the Helios Plus (the smallest Helios) unit wouldn't be

satisfactory. Now, when many think of Helios that is all they think of.

However, the Helios Marathon could satisfy your needs, even if only

continuous works for you. While there are liquid systems that are

continuous only (Companion 1000 and Caire Stroller) they are heavier

than the Marathon. At your level the Marathon would probably still be

the liquid of choice were you to choose liquid. Then later just as a

cylinder user would graduate to larger tanks, you'd graduate to the

Companion or Stroller.

>

> Stefani,

> Welcome to the confusing world of oxygen options and choices. It's all

very overwhelming but you will get accustomed to all of it faster than

you think you will.

> You say National Jewish has said that you need 4 liters when you're

active whether in or out of the house, correct?

> That gives you some options to consider. You can use compressed air

tanks like a D or an E with either a regulator or a conserver. A

regulator gives you continuos flow and the liter per minute can be

adjusted. The one I have goes from .5 liters to 15 liters per minute. A

conserver is different. It gives you a puff or pulse of oxygen when you

inhale and nothing when you are exhaling. The higher the liter flow you

have a conserver set at the larger the pulse of oxygen you will get. But

be aware the pulse you get is not truly equivalent to the liter flow

it's set at. For instance when I am using a conserver I have to set it

at 7 liters to be able to do the things I can do on 4 liters continuous.

> It's called a conserver because the oxygen in the tank will last much

much longer with a conserver than it will with a continuous flow

regulator.

>

> I use my conservers all the time but I have to admit it's easier to be

active when I'm using continuous flow. I think this has to do with the

fact that with continuous flow there is always oxygen in my nasal

passages ready to be used as opposed to only when I inhale with a

conserver. If I'm coughing, if I'm talking, if my nose is a little

stuffy and I'm breathing through my mouth, with continuous flow I'm

still getting oxygen and less so with a conserver.

>

> There are different brands of conservers, some are better than others.

Some give you oxygen through your entire inhale, those are true 'demand

conservers'. That's the kind that I have the easiest time using. They

don't 'conserve' as well as pulse conservers because they do give us

more oxygen. But I need what I need and this is what works best for me.

>

> As far as Helios goes, there's no reason that I can think of that you

couldn't use a Helios Marathon. The Marathon can be switched from pulse

to continuous up to 6 liters per minute I believe. Bruce will correct me

if I'm wrong.

>

> You don't have to have a specific diagnosis for pulmonary rehab. I

would imagine different programs have different requirements but mostly

they can decide based on your pft, your 6 minute walk and maybe a

cardiac stress test. Your pulmo is being ultra cautious. Has he flat out

said no to rehab? Or just no to other treatment like meds and such? So

much can info can be gained with an HRCT.... I mean I had a biopsy and I

would do the same thing if I had it to do over but I do understand the

reluctance. In your case though, the fact that they suspect cellular

NSIP... that's usually treated with prednisone and usually pretty

effectively. I don't think they can tell cellular nsip from fibrotic

nsip without a biopsy but I may be wrong. I know it's a tough decision.

>

> I don't know if any of this mess helps you but let me know if I can do

anything else to confuse you. LOL

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

>

>

>

> ________________________________

> From: sfshaner sfshaner@...

> To: Breathe-Support

> Sent: Thursday, July 16, 2009 8:39:17 PM

> Subject: Differences between a conserver and a pulse

dose and can anyone use them?

>

>

> Ok. I am so new at this stuff. I keep thinking I am ahead of the game

and then there is a new wrinkle. I have a concentrator. My family

physician ordered it for me because I could not get in to see a

pulmonologist for 2 months. It was never taken away and no one told me

to use any more than the 2 liters a night that my family physician

suggested as a temporary measure. The insurance company bought it for me

but I have never been told what else I might need it for (including the

pulmonologist) . 3 years later and National Jewish says I should have a

system that delivers 4 liters for work around the house and anytime I go

out to shop, walk or exercise. For some reason, National Jewish said the

Helios would not be a good idea. They also said I should look at

continuous air as opposed to pulse. I go to my medical supplier and they

want to know if I have a conserver. I have no idea what it is or if I

want one. I have an Ifill system and only a D tank because

> they are out of C and B (assume that is the one the size of a wine

bottle). I do not like the carry system for the D tank. The strap cuts

into my shoulder and have seen some people with " duffle " bag carriers

that 'look' like they might work better. What do you guys do with the 7

ft of cannula that is looping all over?

>

> Also, are there some unwritten rules about qualifying for pulmonary

rehab? I have a new pulmo-dude here in Salt Lake and he is telling me he

is not recommending any treatment until I have a VATS done. Does that

rule out rehab? How positive do they have to be about a diagnosis? I

have a letter from National Jewish that says their 'impression' is that

I have cellular NSIP. My original pulmonologist would not go beyond

Interstitial Lung Disease. One step forward, two steps back.

>

> Stefani

> ILD 2/2006, NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea

4/2009

>