Re: Information needed

[Guest guest]

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!

>

[Guest guest]

In one of my few lucid moments, I actually wrote an Oxygen Users Bill of Rights which is in the files section. I repeat it here simply because I think its so important to us. I wish I could mail this to every employee of every oxygen provider. Of course, those who most need it would think it was hilarious to expect such.I deserve to be treated with caring by health care professionals interested in making my life as full as it can be and not just selling a product like a retailer.I deserve the system designed specifically and best to fit my needs, all of them.I deserve to be educated on all my choices and trained on any choice I make. I deserve to be informed of any possible emergency maintenance I might need and how to perform it.I deserve to be able to be comfortable in my home, to be able to easily get out and around locally and to be able to travel when I want to. I deserve solutions for all of those needs.I deserve to in no way be limited by my supplier's disregard for my needs or by them making decisions that are best for them.I deserve assistance in changing my setup as I progress and my needs change. I deserve to be able to sit at home comfortably with all factors considered including comfort, noise, cost, delivery and maintenance, and emergency situations considered. I deserve never to be concerned about running out or not having oxygen available.I deserve to be able to spend as much time as possible outside my home and have all the oxygen, tanks, or other devices necessary to accomodate that. I deserve to have different systems if needed for different things. For instance a shoulder pack may work in some cases and in others need more capacity and a cart.I deserve to be able to travel by car, train, or plane, as far as I want and for as long as I want. I deserve the availability to me of whatever system most appropriate at that time and for that trip. I deserve to have back up solutions so that I never have to be concerned whether at home, our for the day, or traveling of equipment malfunction or of running out.I deserve to at all times be made to feel I am special and that meeting my needs and assisting me in every way is the goal of my provider.I deserve to have my quality of life enhanced by my oxygen solutions, not lessened. > > 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]

In one of my few lucid moments, I actually wrote an Oxygen Users Bill of Rights which is in the files section. I repeat it here simply because I think its so important to us. I wish I could mail this to every employee of every oxygen provider. Of course, those who most need it would think it was hilarious to expect such.I deserve to be treated with caring by health care professionals interested in making my life as full as it can be and not just selling a product like a retailer.I deserve the system designed specifically and best to fit my needs, all of them.I deserve to be educated on all my choices and trained on any choice I make. I deserve to be informed of any possible emergency maintenance I might need and how to perform it.I deserve to be able to be comfortable in my home, to be able to easily get out and around locally and to be able to travel when I want to. I deserve solutions for all of those needs.I deserve to in no way be limited by my supplier's disregard for my needs or by them making decisions that are best for them.I deserve assistance in changing my setup as I progress and my needs change. I deserve to be able to sit at home comfortably with all factors considered including comfort, noise, cost, delivery and maintenance, and emergency situations considered. I deserve never to be concerned about running out or not having oxygen available.I deserve to be able to spend as much time as possible outside my home and have all the oxygen, tanks, or other devices necessary to accomodate that. I deserve to have different systems if needed for different things. For instance a shoulder pack may work in some cases and in others need more capacity and a cart.I deserve to be able to travel by car, train, or plane, as far as I want and for as long as I want. I deserve the availability to me of whatever system most appropriate at that time and for that trip. I deserve to have back up solutions so that I never have to be concerned whether at home, our for the day, or traveling of equipment malfunction or of running out.I deserve to at all times be made to feel I am special and that meeting my needs and assisting me in every way is the goal of my provider.I deserve to have my quality of life enhanced by my oxygen solutions, not lessened. > > 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]

Joyce Rudy, They have a half sized

liquid tank that really is perfect for the back seat!!!

I hook up to it with a short 7" cannula and just drive along. I can

fill the Helios right from the top just like normal.

The O2 providers put it in the car and when we get to the hotel or

wherever...someone takes it right to the room!

When I need to go out I just fill the Helios as normal and then when I

go home they put it back! No problems so far.

As I said before if I need a refill I have the script and my O2 guy

can fax his buddy and I can get my refill.

It seems to work fine. Now we've only gone away for 3 days so far..so

no need for refills , but I'm hoping to

be able to do more traveling once I'm better from this bronchitis. I'll

keep you posted.

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 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

-----

Original Message -----

From:

Zion

To:

Breathe-Support

Sent:

Tuesday, April 07, 2009 5:55 PM

Subject:

Re: Re: Information needed

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 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!

[Guest guest]

Joyce Rudy, They have a half sized

liquid tank that really is perfect for the back seat!!!

I hook up to it with a short 7" cannula and just drive along. I can

fill the Helios right from the top just like normal.

The O2 providers put it in the car and when we get to the hotel or

wherever...someone takes it right to the room!

When I need to go out I just fill the Helios as normal and then when I

go home they put it back! No problems so far.

As I said before if I need a refill I have the script and my O2 guy

can fax his buddy and I can get my refill.

It seems to work fine. Now we've only gone away for 3 days so far..so

no need for refills , but I'm hoping to

be able to do more traveling once I'm better from this bronchitis. I'll

keep you posted.

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 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

-----

Original Message -----

From:

Zion

To:

Breathe-Support

Sent:

Tuesday, April 07, 2009 5:55 PM

Subject:

Re: Re: Information needed

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 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!

[Guest guest]

Joyce Rudy, They have a half sized

liquid tank that really is perfect for the back seat!!!

I hook up to it with a short 7" cannula and just drive along. I can

fill the Helios right from the top just like normal.

The O2 providers put it in the car and when we get to the hotel or

wherever...someone takes it right to the room!

When I need to go out I just fill the Helios as normal and then when I

go home they put it back! No problems so far.

As I said before if I need a refill I have the script and my O2 guy

can fax his buddy and I can get my refill.

It seems to work fine. Now we've only gone away for 3 days so far..so

no need for refills , but I'm hoping to

be able to do more traveling once I'm better from this bronchitis. I'll

keep you posted.

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 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

-----

Original Message -----

From:

Zion

To:

Breathe-Support

Sent:

Tuesday, April 07, 2009 5:55 PM

Subject:

Re: Re: Information needed

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 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!

[Guest guest]

, this is just amazing! If I have to go back to Jewish I want to drive having gone thru the fiasco of flying with oxygen. It is a 10 hour drive and I could make it in one day but 2 days would leave me rested when I arrive. But then, After a Vats I don't know if I could drive back to AZ....don't think I could if driving home from Phoenix is impossible so I guess I have to rethink this but if I can get one of those car liquid oxygen tanks for my car I can travel with my dogs to CA and spend some time with my good friends. Thanks for sharing this information! 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]

, this is just amazing! If I have to go back to Jewish I want to drive having gone thru the fiasco of flying with oxygen. It is a 10 hour drive and I could make it in one day but 2 days would leave me rested when I arrive. But then, After a Vats I don't know if I could drive back to AZ....don't think I could if driving home from Phoenix is impossible so I guess I have to rethink this but if I can get one of those car liquid oxygen tanks for my car I can travel with my dogs to CA and spend some time with my good friends. Thanks for sharing this information! 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]

, this is just amazing! If I have to go back to Jewish I want to drive having gone thru the fiasco of flying with oxygen. It is a 10 hour drive and I could make it in one day but 2 days would leave me rested when I arrive. But then, After a Vats I don't know if I could drive back to AZ....don't think I could if driving home from Phoenix is impossible so I guess I have to rethink this but if I can get one of those car liquid oxygen tanks for my car I can travel with my dogs to CA and spend some time with my good friends. Thanks for sharing this information! 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]

Joyce

I've traveled more by car for pleasure with oxygen than at any point in

my adult life without it. No, it doesn't change the VATS but it changes

other trips. It also gives you great flexibility. I know it would be

scary to many but when I've traveled along interstates I didn't make

reservations in advance along the way. That way I just was able to go as

far as felt comfortable each day. I remember one day that I felt a bit

sick on my stomach (think it was the Mc's sausage) and so I found

a motel and stopped about one PM. I rested, got to bed early. The next

day then I found myself so refreshed I traveled much further than

anticipated. Along the way, I'd see something interesting and pull off

the highway and go check it out. I remember an hour or so along the

river at Vicksburg, the Memphis tourist site with all the Elvis stuff,

some huge discount store in NC my cousin raved about, a detour near

Kansas City to Blue Springs, Missouri to get Cook items and take

photos of his school for . If I could afford it, I'd be on the

road much much more.

>

> 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>

>

[Guest guest]

Joyce Rudy, I had an OLB ( open

lung biopsy) long story...I couldn't drive for 3 weeks!!!

I think you may want to talk to the doctors about driving after a

VATS...mine was supposed to be a VATS

but I woke with a miserable incision and an explanation about my being

difficult to intubate!

Be certain that they tell you all the possible scenarios!!!!!Good Luck

in advance.

Scleraderma can be determined by blood work too..why the VATS at

all..did I miss something?

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:

, this is just amazing! If I have to go back to Jewish I

want to drive having gone thru the fiasco of flying with oxygen. It is

a 10 hour drive and I could make it in one day but 2 days would leave

me rested when I arrive. But then, After a Vats I don't know if I could

drive back to AZ....don't think I could if driving home from Phoenix is

impossible so I guess I have to rethink this but if I can get one of

those car liquid oxygen tanks for my car I can travel with my dogs to

CA and spend some time with my good friends. Thanks for sharing this

information! Joyce Rudy AZ

-----

Original Message -----

From:

Zion

To:

Breathe-Support

Sent:

Wednesday, April 08, 2009 9:35 PM

Subject:

Re: Re: Information needed

Joyce Rudy, They have a half

sized liquid tank that really is perfect for the back seat!!!

I hook up to it with a short 7" cannula and just drive along. I can

fill the Helios right from the top just like normal.

The O2 providers put it in the car and when we get to the hotel or

wherever...someone takes it right to the room!

When I need to go out I just fill the Helios as normal and then when I

go home they put it back! No problems so far.

As I said before if I need a refill I have the script and my O2 guy

can fax his buddy and I can get my refill.

It seems to work fine. Now we've only gone away for 3 days so far..so

no need for refills , but I'm hoping to

be able to do more traveling once I'm better from this bronchitis. I'll

keep you posted.

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 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

-----

Original Message -----

From:

Zion

To:

Breathe-Support

Sent:

Tuesday, April 07, 2009 5:55 PM

Subject:

Re: Re: Information needed

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 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!

[Guest guest]

, I show the ANA for scleroderma but don't have any skin proplems nor Reynaud's. I show a swallow pattern indicative of it and they think my Gerd may be that too but they don't know. To be certain I don't have it they want to go in and check things out.I have no idea what scleroderma is? 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]

Joyce Rudy, Go to

www.medlineplus.gov...it's a government medical info site.

You can find info on just about anything medical including the

auto-immune disease of Scleraderma.

I know that it attacks skin and all other organs.

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:

, I show the ANA for scleroderma but don't have any skin

proplems nor Reynaud's. I show a swallow pattern indicative of it and

they think my Gerd may be that too but they don't know. To be certain I

don't have it they want to go in and check things out.I have no idea

what scleroderma is? Joyce Rudy AZ

-----

Original Message -----

From:

Zion

To:

Breathe-Support

Sent:

Thursday, April 09, 2009 10:11 AM

Subject:

Re: Re: Information needed

Joyce Rudy, I had an OLB (

open lung biopsy) long story...I couldn't drive for 3 weeks!!!

I think you may want to talk to the doctors about driving after a

VATS...mine was supposed to be a VATS

but I woke with a miserable incision and an explanation about my being

difficult to intubate!

Be certain that they tell you all the possible scenarios!!!!!Good

Luck in advance.

Scleraderma can be determined by blood work too..why the VATS at

all..did I miss something?

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:

, this is just amazing! If I have to go back to Jewish

I want to drive having gone thru the fiasco of flying with oxygen. It

is a 10 hour drive and I could make it in one day but 2 days would

leave me rested when I arrive. But then, After a Vats I don't know if I

could drive back to AZ....don't think I could if driving home from

Phoenix is impossible so I guess I have to rethink this but if I can

get one of those car liquid oxygen tanks for my car I can travel with

my dogs to CA and spend some time with my good friends. Thanks for

sharing this information! Joyce Rudy AZ

-----

Original Message -----

From:

Zion

To:

Breathe-Support

Sent:

Wednesday, April 08, 2009 9:35 PM

Subject:

Re: Re: Information needed

Joyce Rudy, They have a

half sized liquid tank that really is perfect for the back seat!!!

I hook up to it with a short 7" cannula and just drive along. I can

fill the Helios right from the top just like normal.

The O2 providers put it in the car and when we get to the hotel or

wherever...someone takes it right to the room!

When I need to go out I just fill the Helios as normal and then when I

go home they put it back! No problems so far.

As I said before if I need a refill I have the script and my O2 guy

can fax his buddy and I can get my refill.

It seems to work fine. Now we've only gone away for 3 days so far..so

no need for refills , but I'm hoping to

be able to do more traveling once I'm better from this bronchitis. I'll

keep you posted.

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 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

-----

Original Message -----

From:

Zion

To:

Breathe-Support

Sent:

Tuesday, April 07, 2009 5:55 PM

Subject:

Re: Re: Information needed

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 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!

[Guest guest]

Joyce Rudy, Go to

www.medlineplus.gov...it's a government medical info site.

You can find info on just about anything medical including the

auto-immune disease of Scleraderma.

I know that it attacks skin and all other organs.

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:

, I show the ANA for scleroderma but don't have any skin

proplems nor Reynaud's. I show a swallow pattern indicative of it and

they think my Gerd may be that too but they don't know. To be certain I

don't have it they want to go in and check things out.I have no idea

what scleroderma is? Joyce Rudy AZ

-----

Original Message -----

From:

Zion

To:

Breathe-Support

Sent:

Thursday, April 09, 2009 10:11 AM

Subject:

Re: Re: Information needed

Joyce Rudy, I had an OLB (

open lung biopsy) long story...I couldn't drive for 3 weeks!!!

I think you may want to talk to the doctors about driving after a

VATS...mine was supposed to be a VATS

but I woke with a miserable incision and an explanation about my being

difficult to intubate!

Be certain that they tell you all the possible scenarios!!!!!Good

Luck in advance.

Scleraderma can be determined by blood work too..why the VATS at

all..did I miss something?

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:

, this is just amazing! If I have to go back to Jewish

I want to drive having gone thru the fiasco of flying with oxygen. It

is a 10 hour drive and I could make it in one day but 2 days would

leave me rested when I arrive. But then, After a Vats I don't know if I

could drive back to AZ....don't think I could if driving home from

Phoenix is impossible so I guess I have to rethink this but if I can

get one of those car liquid oxygen tanks for my car I can travel with

my dogs to CA and spend some time with my good friends. Thanks for

sharing this information! Joyce Rudy AZ

-----

Original Message -----

From:

Zion

To:

Breathe-Support

Sent:

Wednesday, April 08, 2009 9:35 PM

Subject:

Re: Re: Information needed

Joyce Rudy, They have a

half sized liquid tank that really is perfect for the back seat!!!

I hook up to it with a short 7" cannula and just drive along. I can

fill the Helios right from the top just like normal.

The O2 providers put it in the car and when we get to the hotel or

wherever...someone takes it right to the room!

When I need to go out I just fill the Helios as normal and then when I

go home they put it back! No problems so far.

As I said before if I need a refill I have the script and my O2 guy

can fax his buddy and I can get my refill.

It seems to work fine. Now we've only gone away for 3 days so far..so

no need for refills , but I'm hoping to

be able to do more traveling once I'm better from this bronchitis. I'll

keep you posted.

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 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

-----

Original Message -----

From:

Zion

To:

Breathe-Support

Sent:

Tuesday, April 07, 2009 5:55 PM

Subject:

Re: Re: Information needed

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 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!

[Guest guest]

Excellent site. I especially like www.mayoclinic.com as well.

For medications, I www.drugs.com and www.rxlist.com to have good

information.

> >>>>

> >>>> 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>*

> >>>>

> >>>>

> >

>

[Guest guest]

Excellent site. I especially like www.mayoclinic.com as well.

For medications, I www.drugs.com and www.rxlist.com to have good

information.

> >>>>

> >>>> 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>*

> >>>>

> >>>>

> >

>

[Guest guest]

Thanks to both Bruce and linda. I don't really think they will find scleroderma. it is such a rare illness and I am too old! Joyce Rudy AZ

* Re: Informationneeded> >>>>> >>>> Hi Joyce,> >>>>> >>>> My first time at jumping in on a conversation. Iam> >>>> curious, if you are on 24/7 oxygen why are youonly> >>>> getting canisters? When I had to go on 24/7 oxymy> >>>> 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 Ihave> >>>> to go to the Dr. etc. Learned the hard way nevergo> >>>> 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 prescriptionfor> >>>> this type of machine.> >>>>> >>>> Best Regards,> >>>> ellen> >>>>> >>>> ----------------------------------------------------------> >>>> *A Good Credit Score is 700 or Above. See yoursin> >>>> 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>*> >>>>> >>>>> >>

[Guest guest]

Joyce,

I hope that you don't have to deal with a new diagnosis, something like scleroderma would just add to the complications of your life as dermatomyositis has added to mine.

However it's not as rare as it may seem to be. It's actually no more rare than muscular dystrophy and everyone has heard of that. At any given time there are over 300,000 people in the US with scleroderma. Average age of onset is 25-55 but it has been diagnosed in every age group from infancy to the very elderly.

Scleroderma symptoms can vary along a very wide spectrum of variety and severity. It is still poorly understood and much research is still being done.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, April 10, 2009 3:33:42 PMSubject: Re: Re: Information needed

Thanks to both Bruce and linda. I don't really think they will find scleroderma. it is such a rare illness and I am too old! Joyce Rudy AZ

* Re:

Informationneeded> >>>>> >>>> Hi Joyce,> >>>>> >>>> My first time at jumping in on a conversation. Iam> >>>> curious, if you are on 24/7 oxygen why are youonly> >>>> getting canisters? When I had to go on 24/7 oxymy> >>>> 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 Ihave> >>>> to go to the Dr. etc. Learned the hard way nevergo> >>>> 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 prescriptionfor>

>>>> this type of machine.> >>>>> >>>> Best Regards,> >>>> ellen> >>>>> >>>> ------------ --------- --------- --------- --------- --------- -> >>>> *A Good Credit Score is 700 or Above. See yoursin> >>>> just 2 easy steps!> >>>> <http://pr.atwola. com/promoclk/ 100126575x122142 1323x1201417385/ aol?redir\=http:%2F%2Fwww. freecreditreport .com%2Fpm% 2Fdefault. aspx%3Fsc%

3D668072% 2\6hmpgID%3D62% 26bcd%3DAprilfoo terNO62>*> >>>>> >>>>> >>

[Guest guest]

MB/Joyce

Yes, in reading about it, one thing I found was how, until fairly

recently, doctors were overlooking it in elderly and failing to diagnose

it because they thought it was a disease of younger people. It's one

more disease that we seem to not know much about yet.

Hopefully, you'll be found not to have scleroderma and everything will

smooth out for you. Whatever the case, it sounds like you're in good

hands now and you'll get an accurate and complete diagnosis.

I'm reminded repeatedly how little we really do know. My ex

mother-in-law was recently diagnosed with a rare disease and doctors

have probably been misdiagnosing her for years. Now, her doctor is

recommending a procedure, but he can't for some reason find anyone in

the area who does it. I can find much work online on how to diagnose it

but virtually nothing on what to do after that.

Joyce. I have confidence at this point that you're going to do whatever

it takes and hopefully everything remains good now that your primary

source of lung damage has been removed.

> > >>>>

> > >>>> 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/ 100126575x122142 1323x1201417385/

aol?redir\

> =http:%2F%2Fwww. freecreditreport .com%2Fpm% 2Fdefault. aspx%3Fsc%

3D668072% 2\

> 6hmpgID%3D62% 26bcd%3DAprilfoo terNO62>*

> > >>>>

> > >>>>

> > >

> >

>

[Guest guest]

Beth, I went and looked it up and I am certain I don't hve the disease but it seems almost impossible to diagnose. But, nowhere did it say that you died from it. But as slim a chance that it is I have it I pray I don't have it! It's not something I want at all. Joyce Rudy AZ

* Re: Informationneeded> >>>>> >>>> Hi Joyce,> >>>>> >>>> My first time at jumping in on a conversation. Iam> >>>> curious, if you are on 24/7 oxygen why are youonly> >>>> getting canisters? When I had to go on 24/7 oxymy> >>>> 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 Ihave> >>>> to go to the Dr. etc. Learned the hard way nevergo> >>>> 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 prescriptionfor> >>>> this type of machine.> >>>>> >>>> Best Regards,> >>>> ellen> >>>>> >>>> ------------ --------- --------- --------- --------- --------- -> >>>> *A Good Credit Score is 700 or Above. See yoursin> >>>> just 2 easy steps!> >>>> <http://pr.atwola. com/promoclk/ 100126575x122142 1323x1201417385/ aol?redir\=http:%2F%2Fwww. freecreditreport .com%2Fpm% 2Fdefault. aspx%3Fsc% 3D668072% 2\6hmpgID%3D62% 26bcd%3DAprilfoo terNO62>*> >>>>> >>>>> >>

[Guest guest]

Beth, I went and looked it up and I am certain I don't hve the disease but it seems almost impossible to diagnose. But, nowhere did it say that you died from it. But as slim a chance that it is I have it I pray I don't have it! It's not something I want at all. Joyce Rudy AZ

* Re: Informationneeded> >>>>> >>>> Hi Joyce,> >>>>> >>>> My first time at jumping in on a conversation. Iam> >>>> curious, if you are on 24/7 oxygen why are youonly> >>>> getting canisters? When I had to go on 24/7 oxymy> >>>> 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 Ihave> >>>> to go to the Dr. etc. Learned the hard way nevergo> >>>> 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 prescriptionfor> >>>> this type of machine.> >>>>> >>>> Best Regards,> >>>> ellen> >>>>> >>>> ------------ --------- --------- --------- --------- --------- -> >>>> *A Good Credit Score is 700 or Above. See yoursin> >>>> just 2 easy steps!> >>>> <http://pr.atwola. com/promoclk/ 100126575x122142 1323x1201417385/ aol?redir\=http:%2F%2Fwww. freecreditreport .com%2Fpm% 2Fdefault. aspx%3Fsc% 3D668072% 2\6hmpgID%3D62% 26bcd%3DAprilfoo terNO62>*> >>>>> >>>>> >>

[Guest guest]

Joyce R I was diagnosed with systemic scleroderma last April . I have no outside

visible symptoms but it is attacking all my organs. I think I have had this for

10 yrs. It started with stomach problems then kidneys and finally my lungs. I

hope you don't have this but I think the delay in finding it didn't help me.

Happy Easter.

IPF 2/07 scleroderma sjogrens raynauds 2/08 Il

[Guest guest]

- I am so sorry you have systemic scleroderma....National Jewish is going to give me a open biopsy with camera to determine if I have it or not. So far I have shown up with a titer of it and I have digestive problems. They gave me a swallow test and said it was indicitive of a pattern of something. Isn't it very hard to diagnose? And, it doesn't really come to people who are 65, is that right? I have no outward appearances and I don't hav e raynauds. I do have red spots on my palms and don't know what that means. What are they doing for you? In reality I am aware it is a killer but need ot deny it right now because I am superstitious and feel if I make light of it I won't have it. If I take the possibility that I have it seriously I will have it. So pardon me if I seem frivolous about this. Joyce R AZ

Re: Information needed

Joyce R I was diagnosed with systemic scleroderma last April . I have no outside visible symptoms but it is attacking all my organs. I think I have had this for 10 yrs. It started with stomach problems then kidneys and finally my lungs. I hope you don't have this but I think the delay in finding it didn't help me. Happy Easter. IPF 2/07 scleroderma sjogrens raynauds 2/08 Il

[Guest guest]

- I am so sorry you have systemic scleroderma....National Jewish is going to give me a open biopsy with camera to determine if I have it or not. So far I have shown up with a titer of it and I have digestive problems. They gave me a swallow test and said it was indicitive of a pattern of something. Isn't it very hard to diagnose? And, it doesn't really come to people who are 65, is that right? I have no outward appearances and I don't hav e raynauds. I do have red spots on my palms and don't know what that means. What are they doing for you? In reality I am aware it is a killer but need ot deny it right now because I am superstitious and feel if I make light of it I won't have it. If I take the possibility that I have it seriously I will have it. So pardon me if I seem frivolous about this. Joyce R AZ

Re: Information needed

Joyce R I was diagnosed with systemic scleroderma last April . I have no outside visible symptoms but it is attacking all my organs. I think I have had this for 10 yrs. It started with stomach problems then kidneys and finally my lungs. I hope you don't have this but I think the delay in finding it didn't help me. Happy Easter. IPF 2/07 scleroderma sjogrens raynauds 2/08 Il

[Guest guest]

Joyce R. I was on cytoxan for 5 months but got really sick. They wanted to put

me in in a trial for Gleevec but I didnt qualify . I think cellcept is the next

drug they want me to try. I take 10 mgs of prednisone right now and have been on

it for 2 yr 2 months.

IPF scleroderma Raynauds Sjogrens 2/07 IL