Re: Information needed

[Guest guest]

Hi All,

I found this message on CJD VOICE message board------Janet

Anyone who has the answer, please contact:

Henry E. Stanley

hstanley@...

My mother died in October of 83 of CJD - - I am now 51 years old and am the

oldest of 5 brothers and sisters - - I am

trying to find if there is a connection by hereditary and if there is some

test that we can do to see if we will suffer the same disease.

[Guest guest]

My problem is I can't read the meter that tells when it is getting low. They showed me how once but it is so confusin to me I never can understand it. It has a red color and I keep thinking that says it is low but I guess if the red goes away it means it is low. I am just comfused about it. But I should make them show me over and over until I understand it. The last tank I got from the other oxygen supplier was so easy to read and this one is so difficult. No excuses though I should have made him show me over and over until I understood. It's like the aircept I took with me to Denver. They didn't give me enough instruction and stupid me I just accepted it. They should have given me written instructions too which they did not. The result of that was it was totally useless to me.They brough it over and hurridly they went thru how to work it and the guy who showed me didn't really understand how it worked either because he would keep telling me different things about the plugs, etc. They should have explained it slowly and then had me take it apart to see if I could because when I went to change the battery I could not even remove the old battery to replace it with a new one! They should have explained more fully about how to charge it too. And what those screetches meant and what to do to stop them! It was my fault too because I let them get away with not adequately explaining. I should have been assertive and made sure I understood instead of letting him speed thru the instructions because he wanted to get on with his route. One thing I am finding out is you have to be assertive! If you don't take care of yourself they sure won't! So, I am learning to be assertive and asking for what I need and trying to get it. I don't care any more if they think I am a demanding bitch! I have harmed myself because I didn't demand what I needed! Joyce Rudy AZ

Re: Information needed

JoyceDon't wait ever until you get out either. Even though they should havetaken care of an emergency, call far enough in advance to avoid one. Ifthey are cutting you that tight then they need to leave more or serviceyou more frequently.>> 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 ismy oxygen supplier. I told them I was totally out of 02. The person whoanswered the phone said : We can get out to you early afternoon. I saidOK because I felt like there was nothing I could do but accept what hesaid. At around 1:30 PM my regular deliverer called and said he was upin Prescott (I am really between Prescott and Prescott Valley) andreally couldn't get to me until LATE AFTERNOON. Again I felt I had nosay in this and accepted it. At 5:40 PM no one had come to deliver myoxygen and I called the emergency number where I left my name andnumber. No one called back and after waiting 20 minutes I called againand I was angry. Cory the relief man called me back fast but he saidthere wasn't anything he could do now because he was in Crown King and Iasked where that was and he said outside Mayer. That is about 12 milesfrom me. He said he would get to me when he could. That did it I lostall cool! I yelled at him: Do you think my doctor wrote a precriptionfor oxygen 24/7 because it was a whimsical feeling he had? This istotally unacceptable! By God you will be here by 7 PM!!! I am reportingyou guys to the agency which regulates you! Well, at 7 PM he arived andI now have oxygen but I think even waiting for oxygen when you aretotally out from 9:30 am until early afternoon is inaccusable andcertainl it is inaccusable to let me go without 02 until 7 PM and thenonly because I threatened them!>> The problem is I have searched and seached for an agency thatregulates them so I can make a complaint and I simply cannot find one. Ihave been to government site and seached Google and Dog Pile and triedevery word and words and nothing. Certainly these people have someregulatory agency? I mean they take prescriptions and take medicare! IMUST file an action agaisnt them. If they are doing this to me they aredoing it to others too!>> I tried the Better business Bureau but they will only take complaintsthat 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 ifso how to reach them?>> Thanks. Joyce Rudy AZ>

[Guest guest]

My problem is I can't read the meter that tells when it is getting low. They showed me how once but it is so confusin to me I never can understand it. It has a red color and I keep thinking that says it is low but I guess if the red goes away it means it is low. I am just comfused about it. But I should make them show me over and over until I understand it. The last tank I got from the other oxygen supplier was so easy to read and this one is so difficult. No excuses though I should have made him show me over and over until I understood. It's like the aircept I took with me to Denver. They didn't give me enough instruction and stupid me I just accepted it. They should have given me written instructions too which they did not. The result of that was it was totally useless to me.They brough it over and hurridly they went thru how to work it and the guy who showed me didn't really understand how it worked either because he would keep telling me different things about the plugs, etc. They should have explained it slowly and then had me take it apart to see if I could because when I went to change the battery I could not even remove the old battery to replace it with a new one! They should have explained more fully about how to charge it too. And what those screetches meant and what to do to stop them! It was my fault too because I let them get away with not adequately explaining. I should have been assertive and made sure I understood instead of letting him speed thru the instructions because he wanted to get on with his route. One thing I am finding out is you have to be assertive! If you don't take care of yourself they sure won't! So, I am learning to be assertive and asking for what I need and trying to get it. I don't care any more if they think I am a demanding bitch! I have harmed myself because I didn't demand what I needed! Joyce Rudy AZ

Re: Information needed

JoyceDon't wait ever until you get out either. Even though they should havetaken care of an emergency, call far enough in advance to avoid one. Ifthey are cutting you that tight then they need to leave more or serviceyou more frequently.>> 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 ismy oxygen supplier. I told them I was totally out of 02. The person whoanswered the phone said : We can get out to you early afternoon. I saidOK because I felt like there was nothing I could do but accept what hesaid. At around 1:30 PM my regular deliverer called and said he was upin Prescott (I am really between Prescott and Prescott Valley) andreally couldn't get to me until LATE AFTERNOON. Again I felt I had nosay in this and accepted it. At 5:40 PM no one had come to deliver myoxygen and I called the emergency number where I left my name andnumber. No one called back and after waiting 20 minutes I called againand I was angry. Cory the relief man called me back fast but he saidthere wasn't anything he could do now because he was in Crown King and Iasked where that was and he said outside Mayer. That is about 12 milesfrom me. He said he would get to me when he could. That did it I lostall cool! I yelled at him: Do you think my doctor wrote a precriptionfor oxygen 24/7 because it was a whimsical feeling he had? This istotally unacceptable! By God you will be here by 7 PM!!! I am reportingyou guys to the agency which regulates you! Well, at 7 PM he arived andI now have oxygen but I think even waiting for oxygen when you aretotally out from 9:30 am until early afternoon is inaccusable andcertainl it is inaccusable to let me go without 02 until 7 PM and thenonly because I threatened them!>> The problem is I have searched and seached for an agency thatregulates them so I can make a complaint and I simply cannot find one. Ihave been to government site and seached Google and Dog Pile and triedevery word and words and nothing. Certainly these people have someregulatory agency? I mean they take prescriptions and take medicare! IMUST file an action agaisnt them. If they are doing this to me they aredoing it to others too!>> I tried the Better business Bureau but they will only take complaintsthat 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 ifso how to reach them?>> Thanks. Joyce Rudy AZ>

[Guest guest]

My problem is I can't read the meter that tells when it is getting low. They showed me how once but it is so confusin to me I never can understand it. It has a red color and I keep thinking that says it is low but I guess if the red goes away it means it is low. I am just comfused about it. But I should make them show me over and over until I understand it. The last tank I got from the other oxygen supplier was so easy to read and this one is so difficult. No excuses though I should have made him show me over and over until I understood. It's like the aircept I took with me to Denver. They didn't give me enough instruction and stupid me I just accepted it. They should have given me written instructions too which they did not. The result of that was it was totally useless to me.They brough it over and hurridly they went thru how to work it and the guy who showed me didn't really understand how it worked either because he would keep telling me different things about the plugs, etc. They should have explained it slowly and then had me take it apart to see if I could because when I went to change the battery I could not even remove the old battery to replace it with a new one! They should have explained more fully about how to charge it too. And what those screetches meant and what to do to stop them! It was my fault too because I let them get away with not adequately explaining. I should have been assertive and made sure I understood instead of letting him speed thru the instructions because he wanted to get on with his route. One thing I am finding out is you have to be assertive! If you don't take care of yourself they sure won't! So, I am learning to be assertive and asking for what I need and trying to get it. I don't care any more if they think I am a demanding bitch! I have harmed myself because I didn't demand what I needed! Joyce Rudy AZ

Re: Information needed

JoyceDon't wait ever until you get out either. Even though they should havetaken care of an emergency, call far enough in advance to avoid one. Ifthey are cutting you that tight then they need to leave more or serviceyou more frequently.>> 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 ismy oxygen supplier. I told them I was totally out of 02. The person whoanswered the phone said : We can get out to you early afternoon. I saidOK because I felt like there was nothing I could do but accept what hesaid. At around 1:30 PM my regular deliverer called and said he was upin Prescott (I am really between Prescott and Prescott Valley) andreally couldn't get to me until LATE AFTERNOON. Again I felt I had nosay in this and accepted it. At 5:40 PM no one had come to deliver myoxygen and I called the emergency number where I left my name andnumber. No one called back and after waiting 20 minutes I called againand I was angry. Cory the relief man called me back fast but he saidthere wasn't anything he could do now because he was in Crown King and Iasked where that was and he said outside Mayer. That is about 12 milesfrom me. He said he would get to me when he could. That did it I lostall cool! I yelled at him: Do you think my doctor wrote a precriptionfor oxygen 24/7 because it was a whimsical feeling he had? This istotally unacceptable! By God you will be here by 7 PM!!! I am reportingyou guys to the agency which regulates you! Well, at 7 PM he arived andI now have oxygen but I think even waiting for oxygen when you aretotally out from 9:30 am until early afternoon is inaccusable andcertainl it is inaccusable to let me go without 02 until 7 PM and thenonly because I threatened them!>> The problem is I have searched and seached for an agency thatregulates them so I can make a complaint and I simply cannot find one. Ihave been to government site and seached Google and Dog Pile and triedevery word and words and nothing. Certainly these people have someregulatory agency? I mean they take prescriptions and take medicare! IMUST file an action agaisnt them. If they are doing this to me they aredoing it to others too!>> I tried the Better business Bureau but they will only take complaintsthat 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 ifso how to reach them?>> Thanks. Joyce Rudy AZ>

[Guest guest]

Joyce

How often do they deliver? Weekly? If you're running low during that

time they need to bring you a larger reservoir.

Red is much like empty on your auto fuel gauge. When it first hits it

may 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 insisting

they explain it as much as you need, is to go online and find the

operating manual. The oxygen suppliers for some reason don't give you

such, 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 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

> >

>

[Guest guest]

Here in Oregon we can write the Attorney General, try looking that up....NO ONE wants to hear from their office!

I'm sorry you went through such a day. Maybe if you had been demanding sooner you would have O2 sooner....?

Call provider and ask for supervisor and then ask them who to whom you can make a complaint. If that doesn't work ask for the supervisor's supervisor.

Call your dr and inquire...He is the one who Rxd O2 in the first place.

Go get 'em....

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Information needed

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

[Guest guest]

Here in Oregon we can write the Attorney General, try looking that up....NO ONE wants to hear from their office!

I'm sorry you went through such a day. Maybe if you had been demanding sooner you would have O2 sooner....?

Call provider and ask for supervisor and then ask them who to whom you can make a complaint. If that doesn't work ask for the supervisor's supervisor.

Call your dr and inquire...He is the one who Rxd O2 in the first place.

Go get 'em....

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Information needed

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

[Guest guest]

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

Subject: Re: Information neededTo: Breathe-Support Date: 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> >>

[Guest guest]

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

Subject: Re: Information neededTo: Breathe-Support Date: 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> >>

[Guest guest]

Andy

As to getting anything from a second supplier, you would have to pay for

that.

> > >

> > > 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

> > >

> >

>

[Guest guest]

Andy

You should have many cannister's and certainly have extras. You should

be able to accomplish anything you desire with some safety during the

time between their normal deliveries. I know people on here with over 30

canisters.

> > >

> > > 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

> > >

> >

>

[Guest guest]

Andy

You should have many cannister's and certainly have extras. You should

be able to accomplish anything you desire with some safety during the

time between their normal deliveries. I know people on here with over 30

canisters.

> > >

> > > 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

> > >

> >

>

[Guest guest]

just as a suggestion, you might try getting hold of your state represenative and/or senator.

stuff like this is what they are in office for. well, some of them anyway.

ken o.

To: Breathe-Support Sent: Monday, April 6, 2009 7:55:24 PMSubject: Information needed

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

[Guest guest]

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 Date: 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> >>

[Guest guest]

Bruce- red on my tank seems not to mean danger low. I think it means FULL. I am so confused how to tell what it is. I talked to the head of the office and the situation is getting resolved. They are sending me another tank to have a back up. That is good. I will at least have oxygen. It may not be the most sightly but would prefer to breathe then worry about what it looks like to others. Ahahahahahah Also I pushed for a larger portable. I told him that I need to have enough air to get to Phoenix for a doctors appointment and lunch and then get home and he told me his woes about the manufactuer and said he would try to see if they have a marathon in stock..so may also get another problem resolved. It is just amazing how when you get assertive that things happen. If you don't get assertive they don't move to help resolve the situation. If they follow thru on their plans to help resolve this situation and getme a larger portable I probably won't report them but I'm still thinking about it. It seems "Cory" the person who delivered my O2 at 7 PM was told at noon to get a tank to me and he just didn't do it. He waited and waited and waited until I exploded! I think the boss will have a few good words to say to him. They are also going to reteach me how to read the gage and that will be helpful. For some reason Red means Full I think. Makes no sense to me. Thank you for the information. Joyce Rudy AZ

Re: Information needed

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> >>

[Guest guest]

Bruce- red on my tank seems not to mean danger low. I think it means FULL. I am so confused how to tell what it is. I talked to the head of the office and the situation is getting resolved. They are sending me another tank to have a back up. That is good. I will at least have oxygen. It may not be the most sightly but would prefer to breathe then worry about what it looks like to others. Ahahahahahah Also I pushed for a larger portable. I told him that I need to have enough air to get to Phoenix for a doctors appointment and lunch and then get home and he told me his woes about the manufactuer and said he would try to see if they have a marathon in stock..so may also get another problem resolved. It is just amazing how when you get assertive that things happen. If you don't get assertive they don't move to help resolve the situation. If they follow thru on their plans to help resolve this situation and getme a larger portable I probably won't report them but I'm still thinking about it. It seems "Cory" the person who delivered my O2 at 7 PM was told at noon to get a tank to me and he just didn't do it. He waited and waited and waited until I exploded! I think the boss will have a few good words to say to him. They are also going to reteach me how to read the gage and that will be helpful. For some reason Red means Full I think. Makes no sense to me. Thank you for the information. Joyce Rudy AZ

Re: Information needed

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> >>

[Guest guest]

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:

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> >>

[Guest guest]

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:

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> >>

[Guest guest]

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 ?? " AAAAAAUUUUUURRRRRGGGGGGGI just can't stand thinking one of us needs 02 and must argue to get it. AIN'T RIGHT.. Love & Prayers, PeggyFlorida,  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 Date: Tuesday, April 7, 2009, 11:36 AMIs 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--- On Tue, 4/7/09, Bruce Moreland <brucemoreland@ gmail.com>wrote:From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Information neededTo: Breathe-Support@ yahoogroups. comDate: Tuesday, April 7, 2009, 3:02 AMJoyceHow 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> >>

[Guest guest]

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 ?? " AAAAAAUUUUUURRRRRGGGGGGGI just can't stand thinking one of us needs 02 and must argue to get it. AIN'T RIGHT.. Love & Prayers, PeggyFlorida,  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 Date: Tuesday, April 7, 2009, 11:36 AMIs 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--- On Tue, 4/7/09, Bruce Moreland <brucemoreland@ gmail.com>wrote:From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Information neededTo: Breathe-Support@ yahoogroups. comDate: Tuesday, April 7, 2009, 3:02 AMJoyceHow 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> >>

[Guest guest]

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!

[Guest guest]

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!

[Guest guest]

Peggy,

You said it much better than I could. They MUST give us what we need. No ifs, ands or buts. We have to be able to breathe and they have to give us the tools to do that.

By the way, how are you feeling?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, April 7, 2009 12:49:42 PMSubject: Re: Re: Information neededHi 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> >>

[Guest guest]

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!

[Guest guest]

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!