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

[Guest guest]

Stefani

don't buy anything!!!

with pulmonary fibrosis, our needs change

the little Helios was fine with me for a long time, then there was a change in my condition and I needed to go to the Marathon -- it has both demand (pulse) and continuous features

the liters per minute that i use varies by activity

your body and your oximeter will tell you when you need to increase the lpms

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Differences between a conserver and a pulse dose and can anyone use them?To: Breathe-Support Date: Thursday, July 16, 2009, 10:14 PM

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 do find the Marathon to be lighter and easier to carry than the metal tanks (even the little M6's)

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Differences between a conserver and a pulse dose and can anyone use them?To: Breathe-Support Date: Friday, July 17, 2009, 12:05 AM

StefaniI'll address the Helios comment. For whatever reason your doctor seemsto think you need continuous. The only way to ultimately be sure isthrough trial. However, based on your needs of 4 lpm and possible needfor continuous, the Helios Plus (the smallest Helios) unit wouldn't besatisfactory. Now, when many think of Helios that is all they think of.However, the Helios Marathon could satisfy your needs, even if onlycontinuous works for you. While there are liquid systems that arecontinuous only (Companion 1000 and Caire Stroller) they are heavierthan the Marathon. At your level the Marathon would probably still bethe liquid of choice were you to choose liquid. Then later just as acylinder user would graduate to larger tanks, you'd graduate to theCompanion or Stroller.>> Stefani,> Welcome to the confusing world of oxygen options and choices. It's allvery overwhelming but you will get accustomed to all of it faster thanyou think you will.> You say National Jewish has said that you need 4 liters when you'reactive whether in or out of the house, correct?> That gives you some options to consider. You can use compressed airtanks like a D or an E with either a regulator or a conserver. Aregulator gives you continuos flow and the liter per minute can beadjusted. The one I have goes from .5 liters to 15 liters per minute. Aconserver is different. It gives you a puff or pulse of oxygen when youinhale and nothing when you are exhaling. The higher the liter flow youhave a conserver set at the larger the pulse of oxygen you will get.

Butbe aware the pulse you get is not truly equivalent to the liter flowit's set at. For instance when I am using a conserver I have to set itat 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 muchmuch longer with a conserver than it will with a continuous flowregulator.>> I use my conservers all the time but I have to admit it's easier to beactive when I'm using continuous flow. I think this has to do with thefact that with continuous flow there is always oxygen in my nasalpassages ready to be used as opposed to only when I inhale with aconserver. If I'm coughing, if I'm talking, if my nose is a littlestuffy and I'm breathing through my mouth, with continuous flow I'mstill 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 'demandconservers'. That's the kind that I have the easiest time using. Theydon't 'conserve' as well as pulse conservers because they do give usmore 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 youcouldn't use a Helios Marathon. The Marathon can be switched from pulseto continuous up to 6 liters per minute I believe. Bruce will correct meif I'm wrong.>> You don't have to have a specific diagnosis for pulmonary rehab. Iwould imagine different programs have different requirements but mostlythey can decide based on your pft, your 6 minute walk and maybe acardiac stress test. Your pulmo is being ultra cautious. Has he flat outsaid no to rehab? Or just no to other treatment like meds and such? Somuch can info can be gained

with an HRCT.... I mean I had a biopsy and Iwould do the same thing if I had it to do over but I do understand thereluctance. In your case though, the fact that they suspect cellularNSIP... that's usually treated with prednisone and usually prettyeffectively. I don't think they can tell cellular nsip from fibroticnsip 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 doanything else to confuse you. LOL>> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent:

Thursday, July 16, 2009 8:39:17 PM> Subject: Differences between a conserver and a pulsedose and can anyone use them?>>> Ok. I am so new at this stuff. I keep thinking I am ahead of the gameand then there is a new wrinkle. I have a concentrator. My familyphysician ordered it for me because I could not get in to see apulmonologist for 2 months. It was never taken away and no one told meto use any more than the 2 liters a night that my family physiciansuggested as a temporary measure. The insurance company bought it for mebut I have never been told what else I might need it for (including thepulmonologist) . 3 years later and National Jewish says I should have asystem that delivers 4 liters for work around the house and anytime I goout to shop, walk or exercise. For some reason, National Jewish said theHelios would not be a good idea. They also said I should look

atcontinuous air as opposed to pulse. I go to my medical supplier and theywant to know if I have a conserver. I have no idea what it is or if Iwant 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 winebottle). I do not like the carry system for the D tank. The strap cutsinto my shoulder and have seen some people with "duffle" bag carriersthat 'look' like they might work better. What do you guys do with the 7ft of cannula that is looping all over?>> Also, are there some unwritten rules about qualifying for pulmonaryrehab? I have a new pulmo-dude here in Salt Lake and he is telling me heis not recommending any treatment until I have a VATS done. Does thatrule out rehab? How positive do they have to be about a diagnosis? Ihave a letter from National Jewish that says their 'impression' is thatI have cellular NSIP. My

original pulmonologist would not go beyondInterstitial Lung Disease. One step forward, two steps back.>> Stefani> ILD 2/2006, NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea4/2009>