oxygen needs

[Guest guest]

I was diagnosed by VATS in 1997 to have IPF. Since then my stats at rest have been from 95-98, I thought everything was alright. That was until about two months ago when I took 6 minute tests with and without oxygen. Results of those tests changed my life. After being placed on oxygen at night 3L with humidifier, I found I have been OK at night. I was also told to go on 3L pulsating when doing exertion. I didn't realize their definition of exertion. I thought exertion meant doing treadmill, etc until recently when after simply walking down the hall I discovered my stats dropped into the low 80's. When revisiting the pulmonologist, he said "I told you with any kind of exertion I should go on 3L"! That was a week ago.

Well, for the past few days, my stats on exertion continue to drop so I have raised my level to 4L pulsating, yet walking (at a snails pace) down the hallway, I'm just able to maintain a 90% saturation. My resting continues to run 96-97. I know for many of you, to have a resting 96 would truly be a blessing but for me (a novice) dragging that oxygen around wherever I go is a pain in the ---! We plan to head to Minnesota for a week tomorrow so hopefully my stats will stabilize for now.

I've read so much on this site regarding a wide variety of oxygen needs and equipment used to provide it. In doing so it has created confusion - blame it on my meds! I have heard words like Helios Marathons, Companion 1000's, Caire Strollers. etc. Has anyone on this site ever researched this area to see if there is some type of summary out there on the web which provides a list of this equipment and what oxygen needs they provide, so so that novice like me knows where to turn. I know eventually, I will no longer be on pulse so what then? There must be a natural progression that one goes through as his/her condition worsens and higher doses of oxygen are needed. How does this increase effect the equipment needed? Will this equipment keep me home-bound or will I have to redesign my SUV to hold large cylinders of liquid oxygen - that is of

course, provided I can get them. I am using Apria currently, but it is a small office and many times when I raise a question, I get the "deer in the headlights" look back at me so they have been of little help. We had planned on doing extensive traveling this winter but now not knowing when (?) my oxygen needs will level off, I am not so sure. Any help would be greatly appreciated!

Mike

[Guest guest]

Need some advice! Apria Rep delivered my oxygen today. I received the gas pressured standard oxygen setup. Oxygen Concentrator, D & M Cylinders, Cart with Standard Flow Regulator. Since my oxygen needs at present are for exertion only I chose the smaller cylinders that I can put in a back-pack vs. using the cart. I live in a rural area walking on gravel and dirt and need to walk my dog; so the cart is not going to work for me.The Rep said I might be better off with the OCD pulse dosage on demand regulator. Those cylinders come with a shoulder strap/carry case and I would fill them myself. What do you all think? C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Saturday, August 29, 2009 4:26:21 PMSubject: Re: oxygen needs

Mike,

Here is a link to some very basic information about options in different oxygen systems available to folks like us.

Like you I can sit at rest with no oxygen at all and maintain my sats in the mid 90's for a period of time. If I do anything, and I do mean anything I must use oxygen. I use from 3 to 5 liters depending on what I'm doing and I use 12 liters with a venti-mask when I'm on the treadmill. I realize this is a change for you and a big adjustment in your thinking. I sometimes think it was easier for me. By the time I was diagnosed I needed oxygen 24/7 and there was nothing to do but deal with it.

I realize also (believe me I realize) that dragging the oxygen around is a big old pain. But honestly the alternative is worse. The damage from chronically low sats, the feeling lousy all the time, the constant coughing. It makes using the oxygen alot more palatable.

Take a look at the information here:

http://www.nlhep. org/resources/ Prescrb-Hm- Oxygen/home- oxygen-options- 4.html

Please come back here with any questions and also have a conversation with Apria. Bruce always says we should be having our conversations with the manager and not the customer service person and he's right. First educate yourself and then you are in a position to advocate for yourself. Someone may have other sources of more information and may post it here. Please let me know if you have any questions I can help with but in the mean time, USE YOUR OXYGEN!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Mango man <mangomaninparadise@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, August 29, 2009 11:51:09 AMSubject: oxygen needs

I was diagnosed by VATS in 1997 to have IPF. Since then my stats at rest have been from 95-98, I thought everything was alright. That was until about two months ago when I took 6 minute tests with and without oxygen. Results of those tests changed my life. After being placed on oxygen at night 3L with humidifier, I found I have been OK at night. I was also told to go on 3L pulsating when doing exertion. I didn't realize their definition of exertion. I thought exertion meant doing treadmill, etc until recently when after simply walking down the hall I discovered my stats dropped into the low 80's. When revisiting the pulmonologist, he said "I told you with any kind of exertion I should go on 3L"! That was a week ago. Well, for the past few days, my stats on exertion continue to drop so I have raised my

level to 4L pulsating, yet walking (at a snails pace) down the hallway, I'm just able to maintain a 90% saturation. My resting continues to run 96-97. I know for many of you, to have a resting 96 would truly be a blessing but for me (a novice) dragging that oxygen around wherever I go is a pain in the ---! We plan to head to Minnesota for a week tomorrow so hopefully my stats will stabilize for now.

I've read so much on this site regarding a wide variety of oxygen needs and equipment used to provide it. In doing so it has created confusion - blame it on my meds! I have heard words like Helios Marathons, Companion 1000's, Caire Strollers. etc. Has anyone on this site ever researched this area to see if there is some type of summary out there on the web which provides a list of this equipment and what oxygen needs they provide, so so that novice like me knows where to turn. I know eventually, I will no longer be on pulse so what then? There must be a natural progression that one goes through as his/her condition worsens and higher doses of oxygen are needed. How does this increase effect the equipment needed? Will this equipment keep me home-bound or will I have to redesign my SUV to hold large cylinders of liquid oxygen - that is of

course, provided I can get them. I am using Apria currently, but it is a small office and many times when I raise a question, I get the "deer in the headlights" look back at me so they have been of little help. We had planned on doing extensive traveling this winter but now not knowing when (?) my oxygen needs will level off, I am not so sure. Any help would be greatly appreciated!

Mike

[Guest guest]

,

As long as you can tolerate pulse dosage on oxygen (and with how you are doing it's likely you can) I agree with the Apria rep that a conserving regulator otherwise known as a conserver will make alot of sense for you.

As you probably already know a conserver only gives you oxygen on the inhale as opposed to a continuous flow regulator which is...well...continous. It will make the smaller tanks last much longer. Even at 3 liters anything smaller than a D tank will empty fairly rapidly on continous flow.

It sounds like they are wanting to supply you with a self fill type of concetrator that fills tanks. I've had one for a couple of years (I own mine) and find it very useful. This type of concentrator goes up to 3 liters maximum and tanks can be attached to fill. I can't use a conserver in all circumstances but for some things those tanks come in handy and are an excellent backup for me.

Hope some of that makes sense!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, August 30, 2009 4:24:40 PMSubject: Re: oxygen needs

Need some advice! Apria Rep delivered my oxygen today. I received the gas pressured standard oxygen setup. Oxygen Concentrator, D & M Cylinders, Cart with Standard Flow Regulator. Since my oxygen needs at present are for exertion only I chose the smaller cylinders that I can put in a back-pack vs. using the cart. I live in a rural area walking on gravel and dirt and need to walk my dog; so the cart is not going to work for me.The Rep said I might be better off with the OCD pulse dosage on demand regulator. Those cylinders come with a shoulder strap/carry case and I would fill them myself. What do you all think?

C_53_Familial IPF_5/09Washington

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, August 29, 2009 4:26:21 PMSubject: Re: oxygen needs

Mike,

Here is a link to some very basic information about options in different oxygen systems available to folks like us.

Like you I can sit at rest with no oxygen at all and maintain my sats in the mid 90's for a period of time. If I do anything, and I do mean anything I must use oxygen. I use from 3 to 5 liters depending on what I'm doing and I use 12 liters with a venti-mask when I'm on the treadmill. I realize this is a change for you and a big adjustment in your thinking. I sometimes think it was easier for me. By the time I was diagnosed I needed oxygen 24/7 and there was nothing to do but deal with it.

I realize also (believe me I realize) that dragging the oxygen around is a big old pain. But honestly the alternative is worse. The damage from chronically low sats, the feeling lousy all the time, the constant coughing. It makes using the oxygen alot more palatable.

Take a look at the information here:

http://www.nlhep. org/resources/ Prescrb-Hm- Oxygen/home- oxygen-options- 4.html

Please come back here with any questions and also have a conversation with Apria. Bruce always says we should be having our conversations with the manager and not the customer service person and he's right. First educate yourself and then you are in a position to advocate for yourself. Someone may have other sources of more information and may post it here. Please let me know if you have any questions I can help with but in the mean time, USE YOUR OXYGEN!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Mango man <mangomaninparadise@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, August 29, 2009 11:51:09 AMSubject: oxygen needs

I was diagnosed by VATS in 1997 to have IPF. Since then my stats at rest have been from 95-98, I thought everything was alright. That was until about two months ago when I took 6 minute tests with and without oxygen. Results of those tests changed my life. After being placed on oxygen at night 3L with humidifier, I found I have been OK at night. I was also told to go on 3L pulsating when doing exertion. I didn't realize their definition of exertion. I thought exertion meant doing treadmill, etc until recently when after simply walking down the hall I discovered my stats dropped into the low 80's. When revisiting the pulmonologist, he said "I told you with any kind of exertion I should go on 3L"! That was a week ago. Well, for the past few days, my stats on exertion continue to drop so I have raised my

level to 4L pulsating, yet walking (at a snails pace) down the hallway, I'm just able to maintain a 90% saturation. My resting continues to run 96-97. I know for many of you, to have a resting 96 would truly be a blessing but for me (a novice) dragging that oxygen around wherever I go is a pain in the ---! We plan to head to Minnesota for a week tomorrow so hopefully my stats will stabilize for now.

I've read so much on this site regarding a wide variety of oxygen needs and equipment used to provide it. In doing so it has created confusion - blame it on my meds! I have heard words like Helios Marathons, Companion 1000's, Caire Strollers. etc. Has anyone on this site ever researched this area to see if there is some type of summary out there on the web which provides a list of this equipment and what oxygen needs they provide, so so that novice like me knows where to turn. I know eventually, I will no longer be on pulse so what then? There must be a natural progression that one goes through as his/her condition worsens and higher doses of oxygen are needed. How does this increase effect the equipment needed? Will this equipment keep me home-bound or will I have to redesign my SUV to hold large cylinders of liquid oxygen - that is of

course, provided I can get them. I am using Apria currently, but it is a small office and many times when I raise a question, I get the "deer in the headlights" look back at me so they have been of little help. We had planned on doing extensive traveling this winter but now not knowing when (?) my oxygen needs will level off, I am not so sure. Any help would be greatly appreciated!

Mike

[Guest guest]

Apria must be different. I use C-cylinders or E-cylinders with the cart and what they call a conserver. Or a pulse regulator. I also have the concentrator. How do you fill your own cylinders? Mine just get delivered every two weeks. I have 6 C's and 5 E's. Others have more. I am feeling better today. Bob is helping me try to get ready for our trip.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: oxygen needsTo: Breathe-Support Date: Sunday, August 30, 2009, 1:24 PM

Need some advice! Apria Rep delivered my oxygen today. I received the gas pressured standard oxygen setup. Oxygen Concentrator, D & M Cylinders, Cart with Standard Flow Regulator. Since my oxygen needs at present are for exertion only I chose the smaller cylinders that I can put in a back-pack vs. using the cart. I live in a rural area walking on gravel and dirt and need to walk my dog; so the cart is not going to work for me.The Rep said I might be better off with the OCD pulse dosage on demand regulator. Those cylinders come with a shoulder strap/carry case and I would fill them myself. What do you all think? C_53_Familial IPF_5/09WashingtonFrom: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, August 29, 2009 4:26:21 PMSubject: Re: oxygen needs

Mike,

Here is a link to some very basic information about options in different oxygen systems available to folks like us.

Like you I can sit at rest with no oxygen at all and maintain my sats in the mid 90's for a period of time. If I do anything, and I do mean anything I must use oxygen. I use from 3 to 5 liters depending on what I'm doing and I use 12 liters with a venti-mask when I'm on the treadmill. I realize this is a change for you and a big adjustment in your thinking. I sometimes think it was easier for me. By the time I was diagnosed I needed oxygen 24/7 and there was nothing to do but deal with it.

I realize also (believe me I realize) that dragging the oxygen around is a big old pain. But honestly the alternative is worse. The damage from chronically low sats, the feeling lousy all the time, the constant coughing. It makes using the oxygen alot more palatable.

Take a look at the information here:

http://www.nlhep. org/resources/ Prescrb-Hm- Oxygen/home- oxygen-options- 4.html

Please come back here with any questions and also have a conversation with Apria. Bruce always says we should be having our conversations with the manager and not the customer service person and he's right. First educate yourself and then you are in a position to advocate for yourself. Someone may have other sources of more information and may post it here. Please let me know if you have any questions I can help with but in the mean time, USE YOUR OXYGEN!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Mango man <mangomaninparadise@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, August 29, 2009 11:51:09 AMSubject: oxygen needs

I was diagnosed by VATS in 1997 to have IPF. Since then my stats at rest have been from 95-98, I thought everything was alright. That was until about two months ago when I took 6 minute tests with and without oxygen. Results of those tests changed my life. After being placed on oxygen at night 3L with humidifier, I found I have been OK at night. I was also told to go on 3L pulsating when doing exertion. I didn't realize their definition of exertion. I thought exertion meant doing treadmill, etc until recently when after simply walking down the hall I discovered my stats dropped into the low 80's. When revisiting the pulmonologist, he said "I told you with any kind of exertion I should go on 3L"! That was a week ago. Well, for the past few days, my stats on exertion continue to drop so I have raised my

level to 4L pulsating, yet walking (at a snails pace) down the hallway, I'm just able to maintain a 90% saturation. My resting continues to run 96-97. I know for many of you, to have a resting 96 would truly be a blessing but for me (a novice) dragging that oxygen around wherever I go is a pain in the ---! We plan to head to Minnesota for a week tomorrow so hopefully my stats will stabilize for now.

I've read so much on this site regarding a wide variety of oxygen needs and equipment used to provide it. In doing so it has created confusion - blame it on my meds! I have heard words like Helios Marathons, Companion 1000's, Caire Strollers. etc. Has anyone on this site ever researched this area to see if there is some type of summary out there on the web which provides a list of this equipment and what oxygen needs they provide, so so that novice like me knows where to turn. I know eventually, I will no longer be on pulse so what then? There must be a natural progression that one goes through as his/her condition worsens and higher doses of oxygen are needed. How does this increase effect the equipment needed? Will this equipment keep me home-bound or will I have to redesign my SUV to hold large cylinders of liquid oxygen - that is of

course, provided I can get them. I am using Apria currently, but it is a small office and many times when I raise a question, I get the "deer in the headlights" look back at me so they have been of little help. We had planned on doing extensive traveling this winter but now not knowing when (?) my oxygen needs will level off, I am not so sure. Any help would be greatly appreciated!

Mike

[Guest guest]

, I had the same set up and it worked great until my lpm went up and I was on continuous. The only thing is the home fill worked off the concentrator so even if you are not using it, it has to be on to fill the little ones, and since you are running two machines the cost of electric goes up. That can be a big deal in some areas.Dyane Phoenix Ipf 02>> Need some advice! Apria Rep delivered my oxygen today. I received the gas pressured standard oxygen setup. Oxygen Concentrator, D & M Cylinders, Cart with Standard Flow Regulator. Since my oxygen needs at present are for exertion only I chose the smaller cylinders that I can put in a back-pack vs. using the cart. I live in a rural area walking on gravel and dirt and need to walk my dog; so the cart is not going to work for me.The Rep said I might be better off with the OCD pulse dosage on demand regulator. Those cylinders come with a shoulder strap/carry case and I would fill them myself. What do you all think?> > C_53_Familial IPF_5/09> Washington> > > > > > ________________________________> To: Breathe-Support > Sent: Saturday, August 29, 2009 4:26:21 PM> Subject: Re: oxygen needs> > > Mike,> Here is a link to some very basic information about options in different oxygen systems available to folks like us. > Like you I can sit at rest with no oxygen at all and maintain my sats in the mid 90's for a period of time. If I do anything, and I do mean anything I must use oxygen. I use from 3 to 5 liters depending on what I'm doing and I use 12 liters with a venti-mask when I'm on the treadmill. I realize this is a change for you and a big adjustment in your thinking. I sometimes think it was easier for me. By the time I was diagnosed I needed oxygen 24/7 and there was nothing to do but deal with it. > > I realize also (believe me I realize) that dragging the oxygen around is a big old pain. But honestly the alternative is worse. The damage from chronically low sats, the feeling lousy all the time, the constant coughing. It makes using the oxygen alot more palatable.> > Take a look at the information here:> > http://www.nlhep. org/resources/ Prescrb-Hm- Oxygen/home- oxygen-options- 4.html> > Please come back here with any questions and also have a conversation with Apria. Bruce always says we should be having our conversations with the manager and not the customer service person and he's right. First educate yourself and then you are in a position to advocate for yourself. Someone may have other sources of more information and may post it here. Please let me know if you have any questions I can help with but in the mean time, USE YOUR OXYGEN!> > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ________________________________> From: Mango man <mangomaninparadise@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> Sent: Saturday, August 29, 2009 11:51:09 AM> Subject: oxygen needs> > > I was diagnosed by VATS in 1997 to have IPF. Since then my stats at rest have been from 95-98, I thought everything was alright. That was until about two months ago when I took 6 minute tests with and without oxygen. Results of those tests changed my life. After being placed on oxygen at night 3L with humidifier, I found I have been OK at night. I was also told to go on 3L pulsating when doing exertion. I didn't realize their definition of exertion. I thought exertion meant doing treadmill, etc until recently when after simply walking down the hall I discovered my stats dropped into the low 80's. When revisiting the pulmonologist, he said "I told you with any kind of exertion I should go on 3L"! That was a week ago. Well, for the past few days, my stats on exertion continue to drop so I have raised my level to 4L pulsating, yet walking (at a snails pace) down the hallway, I'm just able to maintain a 90% saturation. My resting continues to run> 96-97. I know for many of you, to have a resting 96 would truly be a blessing but for me (a novice) dragging that oxygen around wherever I go is a pain in the ---! We plan to head to Minnesota for a week tomorrow so hopefully my stats will stabilize for now.> > I've read so much on this site regarding a wide variety of oxygen needs and equipment used to provide it. In doing so it has created confusion - blame it on my meds! I have heard words like Helios Marathons, Companion 1000's, Caire Strollers. etc. Has anyone on this site ever researched this area to see if there is some type of summary out there on the web which provides a list of this equipment and what oxygen needs they provide, so so that novice like me knows where to turn. I know eventually, I will no longer be on pulse so what then? There must be a natural progression that one goes through as his/her condition worsens and higher doses of oxygen are needed. How does this increase effect the equipment needed? Will this equipment keep me home-bound or will I have to redesign my SUV to hold large cylinders of liquid oxygen - that is of course, provided I can get them. I am using Apria currently, but it is a small office and many times when I> raise a question, I get the "deer in the headlights" look back at me so they have been of little help. We had planned on doing extensive traveling this winter but now not knowing when (?) my oxygen needs will level off, I am not so sure. Any help would be greatly appreciated!> > Mike>

[Guest guest]

Beverley,

There is a specific type of concentrator, there are various brands, to which you may attach a tank and it will fill from the concentrator.

I own a Chad Total O2 system. The tanks have a specific attachment that allows me to hook them up to the concentrator. The D tanks I have for this concentrator take about 7 hours to fill.

My siblings purchased this system for me almost 3 years ago. It was extremely important to me when I was in the 2 year waiting period for Medicare. I had no insurance and without this system I would have had to pay a fortune for the oxygen that I needed.

Currently this system is a backup. I don't worry about running out of tanks before my delivery day. I generally use this concentrator at night as it runs in the garage and it supplies me with O2 while I sleep and fills a tank for me and I don't have to listen to it!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, August 30, 2009 5:32:11 PMSubject: Re: oxygen needs

Apria must be different. I use C-cylinders or E-cylinders with the cart and what they call a conserver. Or a pulse regulator. I also have the concentrator. How do you fill your own cylinders? Mine just get delivered every two weeks. I have 6 C's and 5 E's. Others have more. I am feeling better today. Bob is helping me try to get ready for our trip.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: oxygen needsTo: Breathe-Support@ yahoogroups. comDate: Sunday, August 30, 2009, 1:24 PM

Need some advice! Apria Rep delivered my oxygen today. I received the gas pressured standard oxygen setup. Oxygen Concentrator, D & M Cylinders, Cart with Standard Flow Regulator. Since my oxygen needs at present are for exertion only I chose the smaller cylinders that I can put in a back-pack vs. using the cart. I live in a rural area walking on gravel and dirt and need to walk my dog; so the cart is not going to work for me.The Rep said I might be better off with the OCD pulse dosage on demand regulator. Those cylinders come with a shoulder strap/carry case and I would fill them myself. What do you all think?

C_53_Familial IPF_5/09Washington

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, August 29, 2009 4:26:21 PMSubject: Re: oxygen needs

Mike,

Here is a link to some very basic information about options in different oxygen systems available to folks like us.

Like you I can sit at rest with no oxygen at all and maintain my sats in the mid 90's for a period of time. If I do anything, and I do mean anything I must use oxygen. I use from 3 to 5 liters depending on what I'm doing and I use 12 liters with a venti-mask when I'm on the treadmill. I realize this is a change for you and a big adjustment in your thinking. I sometimes think it was easier for me. By the time I was diagnosed I needed oxygen 24/7 and there was nothing to do but deal with it.

I realize also (believe me I realize) that dragging the oxygen around is a big old pain. But honestly the alternative is worse. The damage from chronically low sats, the feeling lousy all the time, the constant coughing. It makes using the oxygen alot more palatable.

Take a look at the information here:

http://www.nlhep. org/resources/ Prescrb-Hm- Oxygen/home- oxygen-options- 4.html

Please come back here with any questions and also have a conversation with Apria. Bruce always says we should be having our conversations with the manager and not the customer service person and he's right. First educate yourself and then you are in a position to advocate for yourself. Someone may have other sources of more information and may post it here. Please let me know if you have any questions I can help with but in the mean time, USE YOUR OXYGEN!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Mango man <mangomaninparadise@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, August 29, 2009 11:51:09 AMSubject: oxygen needs

I was diagnosed by VATS in 1997 to have IPF. Since then my stats at rest have been from 95-98, I thought everything was alright. That was until about two months ago when I took 6 minute tests with and without oxygen. Results of those tests changed my life. After being placed on oxygen at night 3L with humidifier, I found I have been OK at night. I was also told to go on 3L pulsating when doing exertion. I didn't realize their definition of exertion. I thought exertion meant doing treadmill, etc until recently when after simply walking down the hall I discovered my stats dropped into the low 80's. When revisiting the pulmonologist, he said "I told you with any kind of exertion I should go on 3L"! That was a week ago. Well, for the past few days, my stats on exertion continue to drop so I have raised my

level to 4L pulsating, yet walking (at a snails pace) down the hallway, I'm just able to maintain a 90% saturation. My resting continues to run 96-97. I know for many of you, to have a resting 96 would truly be a blessing but for me (a novice) dragging that oxygen around wherever I go is a pain in the ---! We plan to head to Minnesota for a week tomorrow so hopefully my stats will stabilize for now.

I've read so much on this site regarding a wide variety of oxygen needs and equipment used to provide it. In doing so it has created confusion - blame it on my meds! I have heard words like Helios Marathons, Companion 1000's, Caire Strollers. etc. Has anyone on this site ever researched this area to see if there is some type of summary out there on the web which provides a list of this equipment and what oxygen needs they provide, so so that novice like me knows where to turn. I know eventually, I will no longer be on pulse so what then? There must be a natural progression that one goes through as his/her condition worsens and higher doses of oxygen are needed. How does this increase effect the equipment needed? Will this equipment keep me home-bound or will I have to redesign my SUV to hold large cylinders of liquid oxygen - that is of

course, provided I can get them. I am using Apria currently, but it is a small office and many times when I raise a question, I get the "deer in the headlights" look back at me so they have been of little help. We had planned on doing extensive traveling this winter but now not knowing when (?) my oxygen needs will level off, I am not so sure. Any help would be greatly appreciated!

Mike

[Guest guest]

Hi Beverley,I'm so glad you are feeling better! I'm still learning...but from the explanation the rep gave me today, he said there will be another device that sits on top of the concentrator for filling the cylinders; they will show me, he said it takes about 3-hours to fill a cylinder. But I also won't need to store a bunch of cylinders either and they won't need to do as many deliveries. The on-demand gives you O2 as you inhale, it is not a continuous flow, so O2 last longer in the cylinders because you are using it as fast. If at some point I need O2 in the house or for sleeping I can still have continuous flow output from the concentrator.I do have to ask my doc to write a new prescription for the change and an Apria RT needs to come out evaluate me too. I did ask about liquid and

the rep said they won't do liquid anymore. C_53_Familial IPF_5/09WashingtonTo:

Breathe-Support Sent: Sunday, August 30, 2009 2:32:11 PMSubject: Re: oxygen needs

Apria must be different. I use C-cylinders or E-cylinders with the cart and what they call a conserver. Or a pulse regulator. I also have the concentrator. How do you fill your own cylinders? Mine just get delivered every two weeks. I have 6 C's and 5 E's. Others have more. I am feeling better today. Bob is helping me try to get ready for our trip.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia IdahoFrom: worth <hope2thend (AT) yahoo (DOT) com>Subject:

Re: oxygen needsTo: Breathe-Support@ yahoogroups. comDate: Sunday, August 30, 2009, 1:24 PM

Need some advice! Apria Rep delivered my oxygen today. I received the gas pressured standard oxygen setup. Oxygen Concentrator, D & M Cylinders, Cart with Standard Flow Regulator. Since my oxygen needs at present are for exertion only I chose the smaller cylinders that I can put in a back-pack vs. using the cart. I live in a rural area walking on gravel and dirt and need to walk my dog; so the cart is not going to work for me.The Rep said I might be better off with the OCD pulse dosage on demand regulator. Those cylinders come with a shoulder strap/carry case and I would fill them myself. What do you all think? C_53_Familial IPF_5/09WashingtonFrom: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, August 29, 2009 4:26:21 PMSubject: Re: oxygen needs

Mike,

Here is a link to some very basic information about options in different oxygen systems available to folks like us.

Like you I can sit at rest with no oxygen at all and maintain my sats in the mid 90's for a period of time. If I do anything, and I do mean anything I must use oxygen. I use from 3 to 5 liters depending on what I'm doing and I use 12 liters with a venti-mask when I'm on the treadmill. I realize this is a change for you and a big adjustment in your thinking. I sometimes think it was easier for me. By the time I was diagnosed I needed oxygen 24/7 and there was nothing to do but deal with it.

I realize also (believe me I realize) that dragging the oxygen around is a big old pain. But honestly the alternative is worse. The damage from chronically low sats, the feeling lousy all the time, the constant coughing. It makes using the oxygen alot more palatable.

Take a look at the information here:

http://www.nlhep. org/resources/ Prescrb-Hm- Oxygen/home- oxygen-options- 4.html

Please come back here with any questions and also have a conversation with Apria. Bruce always says we should be having our conversations with the manager and not the customer service person and he's right. First educate yourself and then you are in a position to advocate for yourself. Someone may have other sources of more information and may post it here. Please let me know if you have any questions I can help with but in the mean time, USE YOUR OXYGEN!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Mango man <mangomaninparadise@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, August 29, 2009 11:51:09 AMSubject: oxygen needs

I was diagnosed by VATS in 1997 to have IPF. Since then my stats at rest have been from 95-98, I thought everything was alright. That was until about two months ago when I took 6 minute tests with and without oxygen. Results of those tests changed my life. After being placed on oxygen at night 3L with humidifier, I found I have been OK at night. I was also told to go on 3L pulsating when doing exertion. I didn't realize their definition of exertion. I thought exertion meant doing treadmill, etc until recently when after simply walking down the hall I discovered my stats dropped into the low 80's. When revisiting the pulmonologist, he said "I told you with any kind of exertion I should go on 3L"! That was a week ago. Well, for the past few days, my stats on exertion continue to drop so I have raised my

level to 4L pulsating, yet walking (at a snails pace) down the hallway, I'm just able to maintain a 90% saturation. My resting continues to run 96-97. I know for many of you, to have a resting 96 would truly be a blessing but for me (a novice) dragging that oxygen around wherever I go is a pain in the ---! We plan to head to Minnesota for a week tomorrow so hopefully my stats will stabilize for now.

I've read so much on this site regarding a wide variety of oxygen needs and equipment used to provide it. In doing so it has created confusion - blame it on my meds! I have heard words like Helios Marathons, Companion 1000's, Caire Strollers. etc. Has anyone on this site ever researched this area to see if there is some type of summary out there on the web which provides a list of this equipment and what oxygen needs they provide, so so that novice like me knows where to turn. I know eventually, I will no longer be on pulse so what then? There must be a natural progression that one goes through as his/her condition worsens and higher doses of oxygen are needed. How does this increase effect the equipment needed? Will this equipment keep me home-bound or will I have to redesign my SUV to hold large cylinders of liquid oxygen - that is of

course, provided I can get them. I am using Apria currently, but it is a small office and many times when I raise a question, I get the "deer in the headlights" look back at me so they have been of little help. We had planned on doing extensive traveling this winter but now not knowing when (?) my oxygen needs will level off, I am not so sure. Any help would be greatly appreciated!

Mike

[Guest guest]

http://www.portableoxygen.org/overview.htmlhttp://www.nlhep.org/resources/Prescrb-Hm-Oxygen/home-oxygen-options-4.htmlhttp://www.homeoxygen.org/this sight might help P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 10 LPM 8/04, PH 3/06, ILL yo 61REMEMBER : All of you on Prednisone'stressed' spelled backwards is 'desserts'From: Mango man

Subject: oxygen needsTo: Breathe-Support Date: Saturday, August 29, 2009, 10:51 AM

I was diagnosed by VATS in 1997 to have IPF. Since then my stats at rest have been from 95-98, I thought everything was alright. That was until about two months ago when I took 6 minute tests with and without oxygen. Results of those tests changed my life. After being placed on oxygen at night 3L with humidifier, I found I have been OK at night. I was also told to go on 3L pulsating when doing exertion. I didn't realize their definition of exertion. I thought exertion meant doing treadmill, etc until recently when after simply walking down the hall I discovered my stats

dropped into the low 80's. When revisiting the pulmonologist, he said "I told you with any kind of exertion I should go on 3L"! That was a week ago.

Well, for the past few days, my stats on exertion continue to drop so I have raised my level to 4L pulsating, yet walking (at a snails pace) down the hallway, I'm just able to maintain a 90% saturation. My resting continues to run 96-97. I know for many of you, to have a resting 96 would truly be a blessing but for me (a novice) dragging that oxygen around wherever I go is a pain in the ---! We plan to head to Minnesota for a week tomorrow so hopefully my stats will stabilize for now.

I've read so much on this site regarding a wide variety of oxygen needs and equipment used to provide it. In doing so it has created confusion - blame it on my meds! I have heard words like Helios Marathons, Companion 1000's, Caire Strollers. etc. Has anyone on this site ever researched this area to see if there is some type of summary out there on the web which provides a list of this equipment and what oxygen needs they provide, so so that novice like me knows where to turn. I know eventually, I will no longer be on pulse so what then? There must be a natural progression that one goes through as his/her condition worsens and higher doses of oxygen are needed. How does this increase effect the equipment needed? Will this equipment keep me home-bound or will I have to redesign my SUV to hold large cylinders of liquid oxygen - that is of

course, provided I can get them. I am using Apria currently, but it is a small office and many times when I raise a question, I get the "deer in the headlights" look back at me so they have been of little help. We had planned on doing extensive traveling this winter but now not knowing when (?) my oxygen needs will level off, I am not so sure. Any help would be greatly appreciated!

Mike