Re: oxygen needs

[Guest guest]

Hi Mike, I am sorry and completely understand the concern about what leader flow to use -- demand vs constant flow.. Well I have dropped many times and the best thing I can tell you is keep a close check onyour saturation and move the button enough to keep it up. I have been on three leaders for almost the full five years and it fine. But during the day I can sit for a while without my hose and stay in the middle 90'sif i get on my feet My sats drop like a rock. This past few weeks have been the hardest yet. I am now to the point to go the 25 or so feet to get a glass of water my legs are telling me 02, 02, 02.. I just keep it on 4 or 5 then use my cart if I need more quickly. Your 02 may have to be continues. When pulsing is getting iffyit is time to go to constant flow. You will be surprised at the difference. As far as traveling we have found the tanks work out well. Just keep trying different combinations until you are comfortable. Don't ever think you can't get out and about. I go every chance I get. Wears me out but I am still going. Some don't mind chasing the Liquid but we load the trunk with e-tanks. I am sure most here would agree the 02 company's do not understand living with 02 and wanting to have a life.. we do. GO MIKE GO.Relax and go have fun. I told my Dr. Wed. that I am going to Chatt. in Oct so she better do something to keep me breathing until then. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. 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]

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

To: Breathe-Support Sent: 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]

One more tip Mike, every co that supplies Oxygen to patients is supposed to have a respiratory therapist on staff for these situations. Check that out too. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. 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! BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08 From: Mango man <mangomaninparadise (AT) yahoo (DOT) com>To: Breathe-Support Sent: 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]

Thank you. It sounds like it has it's good points. I had heard about it before but I have been so sick that I couldn't get on the computer for a few days and I haven't been thinking too well since I've been able to get back on. I should have gone to the doctor but I let it ride until the weekend and then didn't want to go to emergency. I've been better today and trying to get ready to go on my trip Wednesday but I.m still not well. I'll see what tomorrow bringsBeverley 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]

I have the same setup you do except I don't have the concentrator that you can fill the canisters from. In don't want liquid. My setup suits me. I have more tanks but if I have a power outage I have a backup. With on demand my e tanks last 28 hours on 2lpm. I have it higher than that now with exertion so it doesn't last as long but it still lasts a long time. I can go to the coast and have about 3/4 of the tank left. I love it.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]

It's not liquid. I do have a backup for power outages too. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Sunday, August 30, 2009 8:59:44 PMSubject: Re: oxygen needs

I have the same setup you do except I don't have the concentrator that you can fill the canisters from. In don't want liquid. My setup suits me. I have more tanks but if I have a power outage I have a backup. With on demand my e tanks last 28 hours on 2lpm. I have it higher than that now with exertion so it doesn't last as long but it still lasts a long time. I can go to the coast and have about 3/4 of the tank left. I love it.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]

I don't think I have enough canisters for a very long power outage. I'd be alright on the pulse but you have to have continuous flow for sleeping. I'm heading for Oak Harbor in the morning. I don't know what is going to happen. Bob's 5 year old grandson is in Children's Hospital in Seattle with a bad kidney infection. Bob is talking about staying at the hospital with him. I hope that doesn't leave me alone on the boat. I can't seem to get my strenghth back from being sick. I may not be able to open thos big tanks I use on the boat.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