Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 I find this amazing. As soon as I got my prescription for oxygen, I was given the concentrator for my in home use. I was given the liquid oxygen canister to fill my portable unit for when I leave the house.Windsor, Ontario CanadaDx 03/08 IPFSent on the TELUS Mobility network with BlackBerryFrom: "JOYCE RUDY" Date: Tue, 7 Apr 2009 15:06:23 -0700To: <Breathe-Support >Subject: Re: Re: Information needed Hi Ellen, Glad you jumped in. I have a prescription for LIQUID OXYGEN hence I do not have a concentrator(what you are talking about). I don't understand why some people are prescribed the liquid and some not. I have a tank and it doesn't plug into anything and I have a long hose I use in the house. When I want to go out I have a portable tank I fill directly from the tank. I really do prefer liquid for one reason is it doesn't use electricity and drive up my electric bill. But, as to why some get liquid and others don'e I have no idea. Joyce Rudy AZ Re: Information needed Hi Joyce, My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. Best Regards, ellen A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 I did not read the entire post, but... when I see that the meter on the liquid O2 is running low, i call the O2 supplier, they usually schedule deliveries to this neighborhood on Monday and Thursday. there is no automatic delivery day, it is my responsibility to let them know when I need a new supply i used to call them about every 3 weeks, now with the increased lpm, i call them every 2 weeks they said that it is possible to get an evergency delivery, but I haven't needed one Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Re: Information neededTo: Breathe-Support Date: Tuesday, April 7, 2009, 11:36 AM Is it possible to get a "back-up" supply like an extra cannister or can you only get one at a time/ ? Could you get a back-up supply from a second supplier ? Andy From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Information neededTo: Breathe-Support@ yahoogroups. comDate: Tuesday, April 7, 2009, 3:02 AM JoyceHow often do they deliver? Weekly? If you're running low during thattime they need to bring you a larger reservoir.Red is much like empty on your auto fuel gauge. When it first hits itmay still have some fuel. But its in danger and can soon run out.One thing to do on any of this equipment too, in addition to insistingthey explain it as much as you need, is to go online and find theoperating manual. The oxygen suppliers for some reason don't give yousuch, but they are all available online.> >> > I'm telling you Prescott AZ is a nightmare for people with ILD!> >> > This morning at 9:30 am I called Alliance which opens at 8 am andis> my oxygen supplier. I told them I was totally out of 02. The personwho> answered the phone said : We can get out to you early afternoon. Isaid> OK because I felt like there was nothing I could do but accept whathe> said. At around 1:30 PM my regular deliverer called and said he wasup> in Prescott (I am really between Prescott and Prescott Valley) and> really couldn't get to me until LATE AFTERNOON. Again I felt I hadno> say in this and accepted it. At 5:40 PM no one had come to delivermy> oxygen and I called the emergency number where I left my name and> number. No one called back and after waiting 20 minutes I calledagain> and I was angry. Cory the relief man called me back fast but he said> there wasn't anything he could do now because he was in Crown Kingand I> asked where that was and he said outside Mayer. That is about 12miles> from me. He said he would get to me when he could. That did it Ilost> all cool! I yelled at him: Do you think my doctor wrote aprecription> for oxygen 24/7 because it was a whimsical feeling he had? This is> totally unacceptable! By God you will be here by 7 PM!!! I amreporting> you guys to the agency which regulates you! Well, at 7 PM he arivedand> I now have oxygen but I think even waiting for oxygen when you are> totally out from 9:30 am until early afternoon is inaccusable and> certainl it is inaccusable to let me go without 02 until 7 PM andthen> only because I threatened them!> >> > The problem is I have searched and seached for an agency that> regulates them so I can make a complaint and I simply cannot findone. I> have been to government site and seached Google and Dog Pile andtried> every word and words and nothing. Certainly these people have some> regulatory agency? I mean they take prescriptions and take medicare!I> MUST file an action agaisnt them. If they are doing this to me theyare> doing it to others too!> >> > I tried the Better business Bureau but they will only takecomplaints> that can be resolved and it was resolved when they delivered theoxygen.> Also they won't take complaints against health services.> >> > Does anyone know what agency regulates these oxygen providers? Andif> so how to reach them?> >> > Thanks. Joyce Rudy AZ> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Sher what size cylinders do you use? Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Re: Information neededTo: Breathe-Support Date: Tuesday, April 7, 2009, 11:53 AM Andy....I get what's called a "six-pack". 6 cylinders in one pkg. so I always have plenty. They are replaced when they get down to 3. Easy to pick up and go and a convenient place to store empties. Most of the time I use one at a time.... For me here, only one supplier at a time. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Information neededTo: Breathe-Support@ yahoogroups. comDate: Tuesday, April 7, 2009, 3:02 AM JoyceHow often do they deliver? Weekly? If you're running low during thattime they need to bring you a larger reservoir.Red is much like empty on your auto fuel gauge. When it first hits itmay still have some fuel. But its in danger and can soon run out.One thing to do on any of this equipment too, in addition to insistingthey explain it as much as you need, is to go online and find theoperating manual. The oxygen suppliers for some reason don't give yousuch, but they are all available online.> >> > I'm telling you Prescott AZ is a nightmare for people with ILD!> >> > This morning at 9:30 am I called Alliance which opens at 8 am andis> my oxygen supplier. I told them I was totally out of 02. The personwho> answered the phone said : We can get out to you early afternoon. Isaid> OK because I felt like there was nothing I could do but accept whathe> said. At around 1:30 PM my regular deliverer called and said he wasup> in Prescott (I am really between Prescott and Prescott Valley) and> really couldn't get to me until LATE AFTERNOON. Again I felt I hadno> say in this and accepted it. At 5:40 PM no one had come to delivermy> oxygen and I called the emergency number where I left my name and> number. No one called back and after waiting 20 minutes I calledagain> and I was angry. Cory the relief man called me back fast but he said> there wasn't anything he could do now because he was in Crown Kingand I> asked where that was and he said outside Mayer. That is about 12miles> from me. He said he would get to me when he could. That did it Ilost> all cool! I yelled at him: Do you think my doctor wrote aprecription> for oxygen 24/7 because it was a whimsical feeling he had? This is> totally unacceptable! By God you will be here by 7 PM!!! I amreporting> you guys to the agency which regulates you! Well, at 7 PM he arivedand> I now have oxygen but I think even waiting for oxygen when you are> totally out from 9:30 am until early afternoon is inaccusable and> certainl it is inaccusable to let me go without 02 until 7 PM andthen> only because I threatened them!> >> > The problem is I have searched and seached for an agency that> regulates them so I can make a complaint and I simply cannot findone. I> have been to government site and seached Google and Dog Pile andtried> every word and words and nothing. Certainly these people have some> regulatory agency? I mean they take prescriptions and take medicare!I> MUST file an action agaisnt them. If they are doing this to me theyare> doing it to others too!> >> > I tried the Better business Bureau but they will only takecomplaints> that can be resolved and it was resolved when they delivered theoxygen.> Also they won't take complaints against health services.> >> > Does anyone know what agency regulates these oxygen providers? Andif> so how to reach them?> >> > Thanks. Joyce Rudy AZ> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Peggy glad to see your post hope you are feeling better Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Re: Information neededTo: Breathe-Support Date: Tuesday, April 7, 2009, 12:49 PM Hi All, I just have to jump in and say it does not matter who your supplier is they MUST supply you with enough 02 for your life style. Your Prescription is so you can breathe 24/7 not just when they think you should. When we went to Orlando I had a concentrator and 24 E tanks delivered. They called and ask if they got the order right that I required 24 tanks I said yes and they were there when we arrived. I used 22 of them. Sometimes you just have to dance on some ones desk to get what you need but your Dr's script is your best tool. If he ordered it you get it. I have 24 E's here at home just to go out with or as back up if the power goes out. I guess you could ask "what hours of the day do you think would be best for me to breathe ?? " AAAAAAUUUUUURRRRRGGGGGGG I just can't stand thinking one of us needs 02 and must argue to get it. AIN'T RIGHT.. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Bruce and Joyce... Thanks for the info. No reason to run out if one can get a back-up. LIke my propane tank for the grill. A small investment . Andy @yahoo.com> wrote: From: andrew mcdonald <agmcdsr (AT) yahoo (DOT) com>Subject: Re: Re: Information neededTo: Breathe-Support@ yahoogroups. comDate: Tuesday, April 7, 2009, 11:36 AM Is it possible to get a "back-up" supply like an extra cannister or can you only get one at a time/ ? Could you get a back-up supply from a second supplier ? Andy From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Information neededTo: Breathe-Support@ yahoogroups. comDate: Tuesday, April 7, 2009, 3:02 AM JoyceHow often do they deliver? Weekly? If you're running low during thattime they need to bring you a larger reservoir.Red is much like empty on your auto fuel gauge. When it first hits itmay still have some fuel. But its in danger and can soon run out.One thing to do on any of this equipment too, in addition to insistingthey explain it as much as you need, is to go online and find theoperating manual. The oxygen suppliers for some reason don't give yousuch, but they are all available online.> >> > I'm telling you Prescott AZ is a nightmare for people with ILD!> >> > This morning at 9:30 am I called Alliance which opens at 8 am andis> my oxygen supplier. I told them I was totally out of 02. The personwho> answered the phone said : We can get out to you early afternoon. Isaid> OK because I felt like there was nothing I could do but accept whathe> said. At around 1:30 PM my regular deliverer called and said he wasup> in Prescott (I am really between Prescott and Prescott Valley) and> really couldn't get to me until LATE AFTERNOON. Again I felt I hadno> say in this and accepted it. At 5:40 PM no one had come to delivermy> oxygen and I called the emergency number where I left my name and> number. No one called back and after waiting 20 minutes I calledagain> and I was angry. Cory the relief man called me back fast but he said> there wasn't anything he could do now because he was in Crown Kingand I> asked where that was and he said outside Mayer. That is about 12miles> from me. He said he would get to me when he could. That did it Ilost> all cool! I yelled at him: Do you think my doctor wrote aprecription> for oxygen 24/7 because it was a whimsical feeling he had? This is> totally unacceptable! By God you will be here by 7 PM!!! I amreporting> you guys to the agency which regulates you! Well, at 7 PM he arivedand> I now have oxygen but I think even waiting for oxygen when you are> totally out from 9:30 am until early afternoon is inaccusable and> certainl it is inaccusable to let me go without 02 until 7 PM andthen> only because I threatened them!> >> > The problem is I have searched and seached for an agency that> regulates them so I can make a complaint and I simply cannot findone. I> have been to government site and seached Google and Dog Pile andtried> every word and words and nothing. Certainly these people have some> regulatory agency? I mean they take prescriptions and take medicare!I> MUST file an action agaisnt them. If they are doing this to me theyare> doing it to others too!> >> > I tried the Better business Bureau but they will only takecomplaints> that can be resolved and it was resolved when they delivered theoxygen.> Also they won't take complaints against health services.> >> > Does anyone know what agency regulates these oxygen providers? Andif> so how to reach them?> >> > Thanks. Joyce Rudy AZ> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Ellen glad you jumped in i call the machine in the house a concentrator, it concentrates the O2 from the room air someone else can explain it better than i can, if you are interested Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Information neededTo: Breathe-Support Date: Tuesday, April 7, 2009, 5:44 PM Hi Joyce, My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. Best Regards, ellen A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Rudy Joyce i have both a concentrator and liquid the concentrator uses electricty, but there is a formula for deducting it from your income tax i use a 50 foot tube with it, so i can walk all over the house i also have liquid O2 and a Marathon for when I go out i need to buy the metal canisters if i need back up for when i go out for a long time medicare will not pay for both liquid and metal [does anyone have documentation that they will pay for both? with baseball season starting, i like to bring metal canisters to the game for back up] Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Re: Information neededTo: Breathe-Support Date: Tuesday, April 7, 2009, 6:06 PM Hi Ellen, Glad you jumped in. I have a prescription for LIQUID OXYGEN hence I do not have a concentrator( what you are talking about). I don't understand why some people are prescribed the liquid and some not. I have a tank and it doesn't plug into anything and I have a long hose I use in the house. When I want to go out I have a portable tank I fill directly from the tank. I really do prefer liquid for one reason is it doesn't use electricity and drive up my electric bill. But, as to why some get liquid and others don'e I have no idea. Joyce Rudy AZ Re: Information needed Hi Joyce, My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. Best Regards, ellen A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 ellen what are you bringing to the fantasy picnic? Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Re: Information neededTo: Breathe-Support Date: Tuesday, April 7, 2009, 6:08 PM That's ok Ellen! Always jump in! It is no problem to explain things again! LOL I want to encourage you to jump in and join the conversations! The more the merrier! Joyce Rudy AZ Re: Information needed Ooops, guess I should have read more of this conversation. ......didn' t realize you had a 250 LB canister of Liquid oxygen.....this is why I don't jump in on these, I generally read and try to learn......sorry. ...ellen A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Pink My delivery is every Thursday. They supply reservoirs based on what will cover a week. As the oxygen need increases, they increase the size or number of reservoirs. But I am on liquid both stationary and portable. Were I to see that my supply wasn't going to last me, I would definitely notify them. They normally deliver liquid to my area either Thursday or Friday but for urgent need they certainly would anytime. > > > > > > I'm telling you Prescott AZ is a nightmare for people with ILD! > > > > > > This morning at 9:30 am I called Alliance which opens at 8 am and > is > > my oxygen supplier. I told them I was totally out of 02. The person > who > > answered the phone said : We can get out to you early afternoon. I > said > > OK because I felt like there was nothing I could do but accept what > he > > said. At around 1:30 PM my regular deliverer called and said he was > up > > in Prescott (I am really between Prescott and Prescott Valley) and > > really couldn't get to me until LATE AFTERNOON. Again I felt I had > no > > say in this and accepted it. At 5:40 PM no one had come to deliver > my > > oxygen and I called the emergency number where I left my name and > > number. No one called back and after waiting 20 minutes I called > again > > and I was angry. Cory the relief man called me back fast but he said > > there wasn't anything he could do now because he was in Crown King > and I > > asked where that was and he said outside Mayer. That is about 12 > miles > > from me. He said he would get to me when he could. That did it I > lost > > all cool! I yelled at him: Do you think my doctor wrote a > precription > > for oxygen 24/7 because it was a whimsical feeling he had? This is > > totally unacceptable! By God you will be here by 7 PM!!! I am > reporting > > you guys to the agency which regulates you! Well, at 7 PM he arived > and > > I now have oxygen but I think even waiting for oxygen when you are > > totally out from 9:30 am until early afternoon is inaccusable and > > certainl it is inaccusable to let me go without 02 until 7 PM and > then > > only because I threatened them! > > > > > > The problem is I have searched and seached for an agency that > > regulates them so I can make a complaint and I simply cannot find > one. I > > have been to government site and seached Google and Dog Pile and > tried > > every word and words and nothing. Certainly these people have some > > regulatory agency? I mean they take prescriptions and take medicare! > I > > MUST file an action agaisnt them. If they are doing this to me they > are > > doing it to others too! > > > > > > I tried the Better business Bureau but they will only take > complaints > > that can be resolved and it was resolved when they delivered the > oxygen. > > Also they won't take complaints against health services. > > > > > > Does anyone know what agency regulates these oxygen providers? And > if > > so how to reach them? > > > > > > Thanks. Joyce Rudy AZ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Pink I'm bringing the waitress we just had at Chili's. She was incredible. > > From: JOYCE RUDY greycharlie@... > Subject: Re: Re: Information needed > To: Breathe-Support > Date: Tuesday, April 7, 2009, 6:08 PM > > > > > > > > > That's ok Ellen! Always jump in! It is no problem to explain things again! LOL I want to encourage you to jump in and join the conversations! The more the merrier! Joyce Rudy AZ > > Re: Information needed > > > > Ooops, guess I should have read more of this conversation. ......didn' t realize you had a 250 LB canister of Liquid oxygen.....this is why I don't jump in on these, I generally read and try to learn......sorry. ....ellen > > > A Good Credit Score is 700 or Above. See yours in just 2 easy steps! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Pink Medicare does not indicate what specific equipment or combinations they will pay for, but simply pays a fixed amount for your service. Generally, suppliers would balk at providing too many different kinds, but a customer service oriented supplier would accomodate something for backup. They are responsible for covering your needs and you not running out. Does Medicare pay for metal and liquid? No. Does Medicare not pay for metal and liquid? No. See, medicare pays for your needs to be taken care of. My supplier provides me a reservoir for my van and doesn't get paid one cent more than if they didn't. They do so because it's what is needed to meet my needs. Medicare pays for stationary and portable, but does not specify how that gets done. > > From: JOYCE RUDY greycharlie@... > Subject: Re: Re: Information needed > To: Breathe-Support > Date: Tuesday, April 7, 2009, 6:06 PM > > > > > > > > > Hi Ellen, Glad you jumped in. I have a prescription for LIQUID OXYGEN hence I do not have a concentrator( what you are talking about). I don't understand why some people are prescribed the liquid and some not. I have a tank and it doesn't plug into anything and I have a long hose I use in the house. When I want to go out I have a portable tank I fill directly from the tank. I really do prefer liquid for one reason is it doesn't use electricity and drive up my electric bill. But, as to why some get liquid and others don'e I have no idea. Joyce Rudy AZ > > Re: Information needed > > > > > Hi Joyce, > > My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. > > Best Regards, > ellen > > > A Good Credit Score is 700 or Above. See yours in just 2 easy steps! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Joyce Rudy, I also have the same O2 system. I did not get a choice...it's what was ordered from the "pulmodude". I think that the liquid O2 is more easily handled for outside activity. It's far easier than lugging around the big green tanks. So far I need only the smaller Helios Plus unit( I use 3-3.5 lpm) that goes to 4 lpm on pulse only.( I do have two of them) they each last me about 4+ hours..eventually I may need to go to the larger and heavier portable ....I think it's the Marathon and it goes to a much higher lpm and has the option of continuous and/or pulse. The Helios lets me go where I want to go within its limits and if we're going away we get as small liquid(week-ender) tank that sits on the back seat of the car and gets seat belted in. It has enough capacity for 3+ days. We haven't needed to get it refilled while away but my provider said that they would give me the names of their network of suppliers in the vacation areas and would fax the script wherever it needed to go. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower JOYCE RUDY wrote: Hi Ellen, Glad you jumped in. I have a prescription for LIQUID OXYGEN hence I do not have a concentrator(what you are talking about). I don't understand why some people are prescribed the liquid and some not. I have a tank and it doesn't plug into anything and I have a long hose I use in the house. When I want to go out I have a portable tank I fill directly from the tank. I really do prefer liquid for one reason is it doesn't use electricity and drive up my electric bill. But, as to why some get liquid and others don'e I have no idea. Joyce Rudy AZ ----- Original Message ----- From: polenellen (AT) aol (DOT) com To: Breathe-Support Sent: Tuesday, April 07, 2009 2:44 PM Subject: Re: Information needed Hi Joyce, My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. Best Regards, ellen A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 , Interestingly...my insurance( Blue Cross at the time) would only cover one form of O2 delivery system! So it was the liquid that was selected because it gave me more mobility with less confusion. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower oppm00@... wrote: I find this amazing. As soon as I got my prescription for oxygen, I was given the concentrator for my in home use. I was given the liquid oxygen canister to fill my portable unit for when I leave the house. Windsor, Ontario Canada Dx 03/08 IPF Sent on the TELUS Mobility network with BlackBerry From: "JOYCE RUDY" Date: Tue, 7 Apr 2009 15:06:23 -0700 To: <Breathe-Support > Subject: Re: Re: Information needed Hi Ellen, Glad you jumped in. I have a prescription for LIQUID OXYGEN hence I do not have a concentrator(what you are talking about). I don't understand why some people are prescribed the liquid and some not. I have a tank and it doesn't plug into anything and I have a long hose I use in the house. When I want to go out I have a portable tank I fill directly from the tank. I really do prefer liquid for one reason is it doesn't use electricity and drive up my electric bill. But, as to why some get liquid and others don'e I have no idea. Joyce Rudy AZ ----- Original Message ----- From: polenellen (AT) aol (DOT) com To: Breathe-Support Sent: Tuesday, April 07, 2009 2:44 PM Subject: Re: Information needed Hi Joyce, My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. Best Regards, ellen A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 / Just make sure you choose what is best for you. The oxygen supplier may choose what is cheapest for them if given the chance. I even have my doctor specify on the prescription form. > > > > I find this amazing. As soon as I got my prescription for oxygen, I > > was given the concentrator for my in home use. I was given the liquid > > oxygen canister to fill my portable unit for when I leave the house. > > > > > > > > > > Windsor, Ontario Canada > > Dx 03/08 IPF > > > > Sent on the TELUS Mobility network with BlackBerry > > > > ------------------------------------------------------------------------ > > *From*: " JOYCE RUDY " > > *Date*: Tue, 7 Apr 2009 15:06:23 -0700 > > *To*: Breathe-Support > > *Subject*: Re: Re: Information needed > > > > Hi Ellen, Glad you jumped in. I have a prescription for LIQUID OXYGEN > > hence I do not have a concentrator(what you are talking about). I > > don't understand why some people are prescribed the liquid and some > > not. I have a tank and it doesn't plug into anything and I have a long > > hose I use in the house. When I want to go out I have a portable tank > > I fill directly from the tank. I really do prefer liquid for one > > reason is it doesn't use electricity and drive up my electric bill. > > But, as to why some get liquid and others don'e I have no idea. Joyce > > Rudy AZ > > > > * Re: Information needed > > > > Hi Joyce, > > > > My first time at jumping in on a conversation. I am curious, if > > you are on 24/7 oxygen why are you only getting canisters? When I > > had to go on 24/7 oxy my supplier brought a machine that runs 24/7 > > to my home. I don't know the correct name to it but the only > > time I would run out of oxy is if the electricity went off. I use > > canisters when I have to go to the Dr. etc. Learned the hard way > > never go without a couple of extra tanks as they only last about 4 > > hours if your lucky. Maybe it would be a good idea for your Dr. > > to write a prescription for this type of machine. > > > > Best Regards, > > ellen > > > > ------------------------------------------------------------------------ > > *A Good Credit Score is 700 or Above. See yours in just 2 easy > > steps! > > http://pr.atwola.com/promoclk/100126575x1221421323x1201417385/aol?redir\ =http:%2F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D668072%2\ 6hmpgID%3D62%26bcd%3DAprilfooterNO62>* > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Bruce, So far the liquid O2 is the winner...I'm mobile as I want..inside and out..have tubing all over the place...two big reservoirs...one in the front hall with 50 ft of tubing and one in the back guest room with 50 ft of tubing. I have not run out of O2 except one time when one of them sprung a leak and they came with enough E tanks to get me through the weekend until they could replace the leaker! Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Bruce Moreland wrote: / Just make sure you choose what is best for you. The oxygen supplier may choose what is cheapest for them if given the chance. I even have my doctor specify on the prescription form. > > > > I find this amazing. As soon as I got my prescription for oxygen, I > > was given the concentrator for my in home use. I was given the liquid > > oxygen canister to fill my portable unit for when I leave the house. > > > > > > > > > > Windsor, Ontario Canada > > Dx 03/08 IPF > > > > Sent on the TELUS Mobility network with BlackBerry > > > > ---------------------------------------------------------- > > *From*: "JOYCE RUDY" > > *Date*: Tue, 7 Apr 2009 15:06:23 -0700 > > *To*: Breathe-Support > > *Subject*: Re: Re: Information needed > > > > Hi Ellen, Glad you jumped in. I have a prescription for LIQUID OXYGEN > > hence I do not have a concentrator(what you are talking about). I > > don't understand why some people are prescribed the liquid and some > > not. I have a tank and it doesn't plug into anything and I have a long > > hose I use in the house. When I want to go out I have a portable tank > > I fill directly from the tank. I really do prefer liquid for one > > reason is it doesn't use electricity and drive up my electric bill. > > But, as to why some get liquid and others don'e I have no idea. Joyce > > Rudy AZ > > > > * Re: Information needed > > > > Hi Joyce, > > > > My first time at jumping in on a conversation. I am curious, if > > you are on 24/7 oxygen why are you only getting canisters? When I > > had to go on 24/7 oxy my supplier brought a machine that runs 24/7 > > to my home. I don't know the correct name to it but the only > > time I would run out of oxy is if the electricity went off. I use > > canisters when I have to go to the Dr. etc. Learned the hard way > > never go without a couple of extra tanks as they only last about 4 > > hours if your lucky. Maybe it would be a good idea for your Dr. > > to write a prescription for this type of machine. > > > > Best Regards, > > ellen > > > > ---------------------------------------------------------- > > *A Good Credit Score is 700 or Above. See yours in just 2 easy > > steps! > > <http://pr.atwola.com/promoclk/100126575x1221421323x1201417385/aol?redir\ =http:%2F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D668072%2\ 6hmpgID%3D62%26bcd%3DAprilfooterNO62>* > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 I'm a liquid fan too. Gwynne was my mentor. One word of advice I'd give all too is to get to know the manager of your oxygen supplier. A face to face trip to their office is more than worth it. Ultimately, the manager is the one you need to accomodate your needs. Tell them your situation, your lifestyle, what you require. Ask about special needs you might have such as travel. I was out of my house today (and this isn't unusual) from 7 AM until 5 PM (yes I typed but that was from 's). I had to refill my portable twice. That's why I require a portable reservoir. is able to spend the time she wants out through having two portables. I've known people with three. Peggy has something approaching 1000 (ok slight exaggeration but it does top 30 I believe) E tanks. Design your oxygen setup to fit your lifestyle. Do not change your lifestyle to accommodate an inadequate oxygen setup. > > > > > > > > I find this amazing. As soon as I got my prescription for oxygen, I > > > > was given the concentrator for my in home use. I was given the > > liquid > > > > oxygen canister to fill my portable unit for when I leave the house. > > > > > > > > > > > > > > > > > > > > Windsor, Ontario Canada > > > > Dx 03/08 IPF > > > > > > > > Sent on the TELUS Mobility network with BlackBerry > > > > > > > > > > ---------------------------------------------------------- > > > > *From*: " JOYCE RUDY " > > > > *Date*: Tue, 7 Apr 2009 15:06:23 -0700 > > > > *To*: Breathe-Support > > > > > > *Subject*: Re: Re: Information needed > > > > > > > > Hi Ellen, Glad you jumped in. I have a prescription for LIQUID > > OXYGEN > > > > hence I do not have a concentrator(what you are talking about). I > > > > don't understand why some people are prescribed the liquid and some > > > > not. I have a tank and it doesn't plug into anything and I have a > > long > > > > hose I use in the house. When I want to go out I have a portable > > tank > > > > I fill directly from the tank. I really do prefer liquid for one > > > > reason is it doesn't use electricity and drive up my electric bill. > > > > But, as to why some get liquid and others don'e I have no idea. > > Joyce > > > > Rudy AZ > > > > > > > > * Re: Information needed > > > > > > > > Hi Joyce, > > > > > > > > My first time at jumping in on a conversation. I am curious, if > > > > you are on 24/7 oxygen why are you only getting canisters? When > > I > > > > had to go on 24/7 oxy my supplier brought a machine that runs > > 24/7 > > > > to my home. I don't know the correct name to it but the only > > > > time I would run out of oxy is if the electricity went off. I > > use > > > > canisters when I have to go to the Dr. etc. Learned the hard way > > > > never go without a couple of extra tanks as they only last about > > 4 > > > > hours if your lucky. Maybe it would be a good idea for your Dr. > > > > to write a prescription for this type of machine. > > > > > > > > Best Regards, > > > > ellen > > > > > > > > > > ---------------------------------------------------------- > > > > *A Good Credit Score is 700 or Above. See yours in just 2 easy > > > > steps! > > > > > > http://pr.atwola.com/promoclk/100126575x1221421323x1201417385/aol?redir\ \ > > =http:%2F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D668072%2\ \ > > 6hmpgID%3D62%26bcd%3DAprilfooterNO62 > > http://pr.atwola.com/promoclk/100126575x1221421323x1201417385/aol?redir\ =http:%2F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D668072%2\ 6hmpgID%3D62%26bcd%3DAprilfooterNO62>>* > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Hi LInda- I never heard of having a tank of liquid in your car? How can this be done? How do you pick it up? I may have to go back to National Jewish and I really don't want to because of the oxygen problem. Alliance said they cannot supply oxygen to me in the room I would be staying in and that means I would be without oxygen for as long as I need to be thre accept when I am in the hospital. The manager did say he would give me a tank of compressed oxygen if I wished to drive that would last me 48 hours and it is a 10 hour drive to Denver from here so I would have enough to go and come. National Jewish will give me air if I need it while I am in the facility but when I go home I won't have any. I asked him why and he said Medicare won't do it any more. The beginning of the year and for the last couple of years they have made it more and more difficult for traveling. They won't pay for oxygen at another site other then the home. He was sure convincing so maybe he is being truthful. I don't know though. I hated flying with the aircept and won't do it any more. I will drive to Denver if I have to go back for surgery. Joyce Rudy AZ Re: Information needed Hi Joyce, My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. Best Regards, ellen A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Hi LInda- I never heard of having a tank of liquid in your car? How can this be done? How do you pick it up? I may have to go back to National Jewish and I really don't want to because of the oxygen problem. Alliance said they cannot supply oxygen to me in the room I would be staying in and that means I would be without oxygen for as long as I need to be thre accept when I am in the hospital. The manager did say he would give me a tank of compressed oxygen if I wished to drive that would last me 48 hours and it is a 10 hour drive to Denver from here so I would have enough to go and come. National Jewish will give me air if I need it while I am in the facility but when I go home I won't have any. I asked him why and he said Medicare won't do it any more. The beginning of the year and for the last couple of years they have made it more and more difficult for traveling. They won't pay for oxygen at another site other then the home. He was sure convincing so maybe he is being truthful. I don't know though. I hated flying with the aircept and won't do it any more. I will drive to Denver if I have to go back for surgery. Joyce Rudy AZ Re: Information needed Hi Joyce, My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. Best Regards, ellen A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Joyce They can put either a 25 lb or 50 lb reservoir in your car seat. You just put the seat belt around it and its held in place. In all, I spent over 30 days last year on the road and that is how I did it. I made one 17 day trip and got it refilled along the way. I never had any problems getting someone at a hotel to lift it out and take it to my room or getting someone to return it to the car. In fact, some of those assisting me seemed to get a lot of pleasure out of assisting. I met some wonderful people just from that and walking with them to the room and back. If Alliance can't supply you in the room, then they should refer you to someone who can, even if you have to pay for a couple of days. Basically if you have your prescription you can get someone to supply oxygen. My previous provider was not national and so I had to pay for refills on the road. My current provider is national. > > Hi Ellen, Glad you jumped in. I have a prescription for LIQUID OXYGEN hence I do not have a concentrator(what you are talking about). I don't understand why some people are prescribed the liquid and some not. I have a tank and it doesn't plug into anything and I have a long hose I use in the house. When I want to go out I have a portable tank I fill directly from the tank. I really do prefer liquid for one reason is it doesn't use electricity and drive up my electric bill. But, as to why some get liquid and others don'e I have no idea. Joyce Rudy AZ > Re: Information needed > > > > Hi Joyce, > > My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. > > Best Regards, > ellen > > > ------------------------------------------------------------------------\ -- > A Good Credit Score is 700 or Above. See yours in just 2 easy steps!http://pr.atwola.com/promoclk/100126575x1221421323x1201417385/aol\ ?redir=http:%2F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D66\ 8072%26hmpgID%3D62%26bcd%3DAprilfooterNO62> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Joyce They can put either a 25 lb or 50 lb reservoir in your car seat. You just put the seat belt around it and its held in place. In all, I spent over 30 days last year on the road and that is how I did it. I made one 17 day trip and got it refilled along the way. I never had any problems getting someone at a hotel to lift it out and take it to my room or getting someone to return it to the car. In fact, some of those assisting me seemed to get a lot of pleasure out of assisting. I met some wonderful people just from that and walking with them to the room and back. If Alliance can't supply you in the room, then they should refer you to someone who can, even if you have to pay for a couple of days. Basically if you have your prescription you can get someone to supply oxygen. My previous provider was not national and so I had to pay for refills on the road. My current provider is national. > > Hi Ellen, Glad you jumped in. I have a prescription for LIQUID OXYGEN hence I do not have a concentrator(what you are talking about). I don't understand why some people are prescribed the liquid and some not. I have a tank and it doesn't plug into anything and I have a long hose I use in the house. When I want to go out I have a portable tank I fill directly from the tank. I really do prefer liquid for one reason is it doesn't use electricity and drive up my electric bill. But, as to why some get liquid and others don'e I have no idea. Joyce Rudy AZ > Re: Information needed > > > > Hi Joyce, > > My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. > > Best Regards, > ellen > > > ------------------------------------------------------------------------\ -- > A Good Credit Score is 700 or Above. See yours in just 2 easy steps!http://pr.atwola.com/promoclk/100126575x1221421323x1201417385/aol\ ?redir=http:%2F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D66\ 8072%26hmpgID%3D62%26bcd%3DAprilfooterNO62> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Joyce Something else he could do in addition to the compressed tanks is to loan you a concentrator for the trip. You could then use it in the hotel. > > Hi Ellen, Glad you jumped in. I have a prescription for LIQUID OXYGEN hence I do not have a concentrator(what you are talking about). I don't understand why some people are prescribed the liquid and some not. I have a tank and it doesn't plug into anything and I have a long hose I use in the house. When I want to go out I have a portable tank I fill directly from the tank. I really do prefer liquid for one reason is it doesn't use electricity and drive up my electric bill. But, as to why some get liquid and others don'e I have no idea. Joyce Rudy AZ > Re: Information needed > > > > Hi Joyce, > > My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. > > Best Regards, > ellen > > > ------------------------------------------------------------------------\ -- > A Good Credit Score is 700 or Above. See yours in just 2 easy steps!http://pr.atwola.com/promoclk/100126575x1221421323x1201417385/aol\ ?redir=http:%2F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D66\ 8072%26hmpgID%3D62%26bcd%3DAprilfooterNO62> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Joyce Something else he could do in addition to the compressed tanks is to loan you a concentrator for the trip. You could then use it in the hotel. > > Hi Ellen, Glad you jumped in. I have a prescription for LIQUID OXYGEN hence I do not have a concentrator(what you are talking about). I don't understand why some people are prescribed the liquid and some not. I have a tank and it doesn't plug into anything and I have a long hose I use in the house. When I want to go out I have a portable tank I fill directly from the tank. I really do prefer liquid for one reason is it doesn't use electricity and drive up my electric bill. But, as to why some get liquid and others don'e I have no idea. Joyce Rudy AZ > Re: Information needed > > > > Hi Joyce, > > My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. > > Best Regards, > ellen > > > ------------------------------------------------------------------------\ -- > A Good Credit Score is 700 or Above. See yours in just 2 easy steps!http://pr.atwola.com/promoclk/100126575x1221421323x1201417385/aol\ ?redir=http:%2F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D66\ 8072%26hmpgID%3D62%26bcd%3DAprilfooterNO62> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Joyce, Bruce already gave you good information about the smaller liquid tank for your car. If your current supplier has the ability to do that for you that is probably your best bet for a trip to Denver. They can also loan you a regular concentrator for you to use in a hotel room. The only point I wanted to clarify for you was the way Medicare pays for your oxygen. Medicare pays your supplier a flat fee to supply your oxygen needs. No matter how much you need or what type they supply you with they get the same flat amount. It's in the area of around $200 per month. This gives them an incentive to supply you with whatever costs them the least. If you are working with a local or regional supplier, you either have to travel with enough equipment to meet your needs or be prepared to pay a supplier in your destination city to supply you with what you need. This is because Medicare won't pay more than one supplier per patient. Now if you work with one of the national companies like Apria or Lincare, they will usually be able to provide you with what you need almost anywhere you can travel in the US and because the billing doesn't change it's all covered under the flat fee that Medicare pays to the company. Your supplier was not really being honest when he blamed Medicare. Saying "I asked him why and he said Medicare won't do it any more. The beginning of the year and for the last couple of years they have made it more and more difficult for traveling." That's just frankly not true. It's a matter of who your supplier is, do they have a branch in the city you're traveling to. If they do, the billing doesn't change and they can supply you in your destination city. If they don't then you will have to travel with your own supply or be prepared to pay for your needs at your destination. I hope that makes sense. Feel free to email me on or off the board if you need this clarified. You can also go to www.medicare.gov and read about all this stuff. Be warned though sometimes it puts me to sleep. LOL Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, April 8, 2009 7:19:58 PMSubject: Re: Re: Information needed Hi LInda- I never heard of having a tank of liquid in your car? How can this be done? How do you pick it up? I may have to go back to National Jewish and I really don't want to because of the oxygen problem. Alliance said they cannot supply oxygen to me in the room I would be staying in and that means I would be without oxygen for as long as I need to be thre accept when I am in the hospital. The manager did say he would give me a tank of compressed oxygen if I wished to drive that would last me 48 hours and it is a 10 hour drive to Denver from here so I would have enough to go and come. National Jewish will give me air if I need it while I am in the facility but when I go home I won't have any. I asked him why and he said Medicare won't do it any more. The beginning of the year and for the last couple of years they have made it more and more difficult for traveling. They won't pay for oxygen at another site other then the home. He was sure convincing so maybe he is being truthful. I don't know though. I hated flying with the aircept and won't do it any more. I will drive to Denver if I have to go back for surgery. Joyce Rudy AZ Re: Information needed Hi Joyce, My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. Best Regards, ellen A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Joyce, Bruce already gave you good information about the smaller liquid tank for your car. If your current supplier has the ability to do that for you that is probably your best bet for a trip to Denver. They can also loan you a regular concentrator for you to use in a hotel room. The only point I wanted to clarify for you was the way Medicare pays for your oxygen. Medicare pays your supplier a flat fee to supply your oxygen needs. No matter how much you need or what type they supply you with they get the same flat amount. It's in the area of around $200 per month. This gives them an incentive to supply you with whatever costs them the least. If you are working with a local or regional supplier, you either have to travel with enough equipment to meet your needs or be prepared to pay a supplier in your destination city to supply you with what you need. This is because Medicare won't pay more than one supplier per patient. Now if you work with one of the national companies like Apria or Lincare, they will usually be able to provide you with what you need almost anywhere you can travel in the US and because the billing doesn't change it's all covered under the flat fee that Medicare pays to the company. Your supplier was not really being honest when he blamed Medicare. Saying "I asked him why and he said Medicare won't do it any more. The beginning of the year and for the last couple of years they have made it more and more difficult for traveling." That's just frankly not true. It's a matter of who your supplier is, do they have a branch in the city you're traveling to. If they do, the billing doesn't change and they can supply you in your destination city. If they don't then you will have to travel with your own supply or be prepared to pay for your needs at your destination. I hope that makes sense. Feel free to email me on or off the board if you need this clarified. You can also go to www.medicare.gov and read about all this stuff. Be warned though sometimes it puts me to sleep. LOL Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, April 8, 2009 7:19:58 PMSubject: Re: Re: Information needed Hi LInda- I never heard of having a tank of liquid in your car? How can this be done? How do you pick it up? I may have to go back to National Jewish and I really don't want to because of the oxygen problem. Alliance said they cannot supply oxygen to me in the room I would be staying in and that means I would be without oxygen for as long as I need to be thre accept when I am in the hospital. The manager did say he would give me a tank of compressed oxygen if I wished to drive that would last me 48 hours and it is a 10 hour drive to Denver from here so I would have enough to go and come. National Jewish will give me air if I need it while I am in the facility but when I go home I won't have any. I asked him why and he said Medicare won't do it any more. The beginning of the year and for the last couple of years they have made it more and more difficult for traveling. They won't pay for oxygen at another site other then the home. He was sure convincing so maybe he is being truthful. I don't know though. I hated flying with the aircept and won't do it any more. I will drive to Denver if I have to go back for surgery. Joyce Rudy AZ Re: Information needed Hi Joyce, My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. Best Regards, ellen A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 MB/Joyce Here are a couple of translations: When an oxygen supplier says " Medicare won't pay for that " they're really saying " we don't want to give you that. " When an oxygen supplier says " liquid oxygen is only for portable use " they are really saying " we don't want to have to fill you up often. " When an oxygen supplier says " we can't help you on that " they are really saying " we don't care enough to work on figuring out a solution. " Now, I do believe what medicare and insurance companies are paying is too little now. But thats not a valid excuse for a supplier to give you song and dance. When oxygen suppliers don't help you with a solution what they are saying is " we aren't really medical providers but we're just equipment delivery people. " Well, they are usurping their responsibility as they are suppose to be part of the medical community just as much as doctors or hospitals or anyone else in the field. Unfortunately what they are saying with much of the misinformation they give is " we think the patient is too stupid to research and find out the truth and they'll buy our story. " There are excellent providers out there. Everyone needs to insist their provider meet their needs and standards. Talk as Joyce did a couple of days ago to the manager. While some drivers and customer service reps are knowledgeable many aren't. I had a driver tell me they only made 7 foot cannulas for Helios when I'd had 4 foot from the same company every week before. I've had them say that 50 feet is the longest hose made when all that means is that its the longest we have. Also, you may have to educate them as to the nature of your disease and as to what you intend to do lifestyle wise. They aren't use to PF'ers. I told them in advance that I wasn't their typical stay at home customer. They have customers who get by on three portable canisters or one larger one on a cart and don't need replacements but every ten days or two weeks. I have probably filled my Helios Marathon 17 times or so in the past week as every day I've filled at least twice and some days three times. > Hi Ellen, Glad you jumped in. I have a prescription for LIQUID OXYGEN hence I do not have a concentrator( what you are talking about). I don't understand why some people are prescribed the liquid and some not. I have a tank and it doesn't plug into anything and I have a long hose I use in the house. When I want to go out I have a portable tank I fill directly from the tank. I really do prefer liquid for one reason is it doesn't use electricity and drive up my electric bill. But, as to why some get liquid and others don'e I have no idea. Joyce Rudy AZ > Re: Information needed > > Hi Joyce, > > My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. > > Best Regards, > ellen > > ________________________________ > A Good Credit Score is 700 or Above. See yours in just 2 easy steps! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 MB/Joyce Here are a couple of translations: When an oxygen supplier says " Medicare won't pay for that " they're really saying " we don't want to give you that. " When an oxygen supplier says " liquid oxygen is only for portable use " they are really saying " we don't want to have to fill you up often. " When an oxygen supplier says " we can't help you on that " they are really saying " we don't care enough to work on figuring out a solution. " Now, I do believe what medicare and insurance companies are paying is too little now. But thats not a valid excuse for a supplier to give you song and dance. When oxygen suppliers don't help you with a solution what they are saying is " we aren't really medical providers but we're just equipment delivery people. " Well, they are usurping their responsibility as they are suppose to be part of the medical community just as much as doctors or hospitals or anyone else in the field. Unfortunately what they are saying with much of the misinformation they give is " we think the patient is too stupid to research and find out the truth and they'll buy our story. " There are excellent providers out there. Everyone needs to insist their provider meet their needs and standards. Talk as Joyce did a couple of days ago to the manager. While some drivers and customer service reps are knowledgeable many aren't. I had a driver tell me they only made 7 foot cannulas for Helios when I'd had 4 foot from the same company every week before. I've had them say that 50 feet is the longest hose made when all that means is that its the longest we have. Also, you may have to educate them as to the nature of your disease and as to what you intend to do lifestyle wise. They aren't use to PF'ers. I told them in advance that I wasn't their typical stay at home customer. They have customers who get by on three portable canisters or one larger one on a cart and don't need replacements but every ten days or two weeks. I have probably filled my Helios Marathon 17 times or so in the past week as every day I've filled at least twice and some days three times. > Hi Ellen, Glad you jumped in. I have a prescription for LIQUID OXYGEN hence I do not have a concentrator( what you are talking about). I don't understand why some people are prescribed the liquid and some not. I have a tank and it doesn't plug into anything and I have a long hose I use in the house. When I want to go out I have a portable tank I fill directly from the tank. I really do prefer liquid for one reason is it doesn't use electricity and drive up my electric bill. But, as to why some get liquid and others don'e I have no idea. Joyce Rudy AZ > Re: Information needed > > Hi Joyce, > > My first time at jumping in on a conversation. I am curious, if you are on 24/7 oxygen why are you only getting canisters? When I had to go on 24/7 oxy my supplier brought a machine that runs 24/7 to my home. I don't know the correct name to it but the only time I would run out of oxy is if the electricity went off. I use canisters when I have to go to the Dr. etc. Learned the hard way never go without a couple of extra tanks as they only last about 4 hours if your lucky. Maybe it would be a good idea for your Dr. to write a prescription for this type of machine. > > Best Regards, > ellen > > ________________________________ > A Good Credit Score is 700 or Above. See yours in just 2 easy steps! > Quote Link to comment Share on other sites More sharing options...
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