Re: Got O2??

[Guest guest]

i tried the liquid O2 for about 2 weeks and decided it just was not

for me. that lil portable didn't hold as much O2 as my B tank which

i found ran out too quickly and was the reason i asked for the

liquid...... we live and we learn.

i will stick to my gas E tanks and concentrator thank you very much!

jaime Pf 10-05

>

> I want to get that printed on a Tshirt.....anyway....I have

toughed it out with this liquid oxygen delivery system for 2 years

now and I think I'm done. When it works, it's great.....but it's

very finicky....freezes very easily and then the portable doesn't

work.....if the portable gets really low cause I wasn't watching it,

it will probably freeze....they say just wait 10 minutes and it will

thaw out....WRONG! This morning, I got a new tank of liquid.....my

portable was really full, so I didn't need to refill it until after

lunch.....while I was filling it...the oxygen sounded different and

it was taking forever to fill my portable. It never really filled

the portable to the top.....but it should've worked....the demand

didn't work at all.....I tried this many many times....no

go....then, I thought....OK, just use the continuous and call the

company and see what they can do.....so I called them and they are

delivering a new tank tomorrow morning. I was doing a few things

getti

> ng ready for dinner....and I started to feel awful.....found out

that nothing was coming out of the nasal cannula.....no continuous,

no demand....nothing. So, I got the long tubing and a humidity

bottle and am using the oxygen right from the tank. That was about

5 hours ago....I'm so wound up because it made me remember how hard

it was to function with all that tubing on the floor.....getting

caught on a chair leg....a dog sleeping on it....me tripping over

it....UGH!!!! It's also hot and humid here and I want it to be

FALL!! Nice, dry, cool weather.....I fantasize about it!!!!!

> Today went by fast....I had to run some errands.....took my

wheelchair into Lowes....it was fun going up and down every

isle.....was very hard to pay for my stuff, tho....I used my debit

card....the stupid thing was bolted to the counter.....on the

cashiers side of the counter.....I said :they don't give any thought

to someone in a wheelchair, do they? " I got my chair up as close as

I could and scribbled my name.

> Today is Jack's 6th birthday.....so he got 2 new balls to play

with and he's got a big smile on his face and that little tail has

been wagging since I brought them home. I was going to give him a

bath...but decided that wasn't something HE would like for his

special day....so, if I can get my oxygen straightened out, I'll do

it tomorrow.

> Maybe I can call the home care company and see what other devices

they have.....if they don't, I guess I'll have to find another

company. I have personal experience with Apria when I was working

as a home care nurse....I thought they were a terrible company with

no compassion for anyone or anything, except their insurance

checks. I hate to think about changing my system, but maybe a

different one will be much better.

> Thanks for letting me howl at you all for awhile.

> Love, Diane

>

> --

> Diane Quinlan

> dianequinlan@...

>

[Guest guest]

Joyce,

This is one of the reasons I love having this group to learn from. A couple of months ago a family friend really lobbied me hard to switch to the Helios system and I almost did it. She's a nurse in the home care field and I had every reason to believe she knew what she was talking about and I'm sure it must work for some people or in some circumstances but.... I talked to the RT at my doctor's office and mentioned Helios....'s face screwed up in a grimace and said..welllllll and she suggested she arrange to have it demonstrated for me which we did and the demonstrator had the thing freeze up on him. Now if the guy who's supposed to be impressing me with it can't use it....I'd never be able to 'make it work'.

I'm sticking with concentrator and tanks for now. I would like to get a portable concentrator at some point but they are expensive and I will always need tanks for exercise because of my ultra-high O2 requirements for aerobic activity.

I've learned so much from all of you and have undoubtedly been saved more aggravation and frustration than I'll ever know. Thanks to everyone for all the help you've given me just by being here!!

Beth IPF 06/06Draw close. Hold hands. Life is short. God is good.

Re: Got O2??

Diane,

Liquid oxygen and the Helios is great....if it works. I would be getting ready to leave for a wedding or church...and SORRY CHARLIE, I AM FROZEN. After they told me that I could have one or the other...I had to choose tanks for mobility. For me, it is the best therapy just being able to get out of the house.

I got the chest length cannula so that the connection doesn't get caught on things so easily. The one that I have has a swivel connector right at chest level which keeps it from knotting up in the floor. You can even use a swivel at the other end. You can get swivels with two female ends or one male, one female, etc....there are several. The one I use right now is Swivel Connector #1225 and Nasal Cannula #1606 from Salter Labs. I am only 5' 2" and the tubing with 4 or 7 ft. lengths put the connector right at the floor. It gets hung under doors, furniture and everything. This of course gets hung onto door handles, etc. but is soooo much better for me. I have Apria and believe me I have fought the fight. I now have an e-mail dialogue with the manager and all my requests go through him. He is very nice. Apria is taking over the market. The more they monopolyze the

market, the less service they provide. And yes, it is all about money, like insurance and docs!

Another tip. I put the concentrator in the living room ....on carpet...less noise. We rarely use the living room. I run the tubing behind the couch and it is not in the middle of the floor. I do get wound up on toy trucks, etc. One day I had several little toy soldiers riding around on my tubing. Grandkids leave toys everywhere and they get onto the tubing. And yes, I some days I have temper tantrums from having my head jerked back when I am in a hurry or when some big foot steps on the line. But, oh to breathe, it is all worth it!

I know the tubing and dogs are a nuisance. So are babies. Have these three 3 year olds. All three were crawling at the same time. They all liked to chew on the tubing. For a long while I couldn't get far....and certainly not quickly!! Now, they like to pull it to torment me! They get in trouble with thier parents but I just make a game of it.

I don't know how you have made it with that liquid stuff this long. Wish it worked. Wouldn't you think that since they can put people out into space dangling around on a tube, they could provide a simple oxygen device that would be lightweight and workable. Dreaming, I suppose.

Whew, chatty this morning. Too much coffee already! It is only 5:45. Been up since 4.

Hugs for the day...

Joyce PF 1997

>> I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can

do.....so I called them and they are delivering a new tank tomorrow morning. I was doing a few things getti> ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the

counter..... I said :they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > Thanks for letting me howl at you all for awhile.

> Love, Diane> > --> Diane Quinlan > dianequinlan@ ...>

[Guest guest]

I have the liquid 02 and a marathon portable, it does both pulse and continuos. For pulse(D) it goes to 4mfl,and continuos© 6mfl. I have to use c4 when walking and use p4 when riding or just being idle or sitting and it last quite awhile. I have been able to go longer with this 6hrs. If you can use just pulse it last longer. I had to have a Dr write a script for the marathon portable as there are costly. However insurance doesn't care it pays the same no matter which portable you get. I started with a concentrator and the bottles ,and had bottle all over the house and we lost power for 4 days and had no air, so had to leave home. Then went to liquid and have had no trouble, well I do have the hose running on the floor and the dog thinking he is to guard it as he sleeps on it most of the time, or hubby is tripping over it. I just catch it on the cabinet doors or get it stuck under the door and things like that. But I don't like the portable to use at home, I prefer the big liquid I need the water bottle connected to mine as I get nose bleed and on blood thinners.

I always had a 12 hrs portable gas bottle on hand in case of emergency, or I need to go for sometime.

Donna

[Guest guest]

Donna,

I am also on blood thinner and get nosebleeds. I use a humidifier bottle. I also use KY jelly (cheaper than Ayr) in my nose and when I get sore I use Neosporin creme (not gel).

Do you not have trouble with it freezing up when you refill the portable?

Different strokes for different folks, I guess. Just wish someone would invent a microchip for oxygen supply. >> I have the liquid 02 and a marathon portable, it does both pulse and> continuos. For pulse(D) it goes to 4mfl,and continuos© 6mfl. I have to use> c4 when walking and use p4 when riding or just being idle or sitting and it> last quite awhile. I have been able to go longer with this 6hrs. If you can> use just pulse it last longer. I had to have a Dr write a script for the> marathon portable as there are costly. However insurance doesn't care it> pays the same no matter which portable you get. I started with a> concentrator and the bottles ,and had bottle all over the house and we lost> power for 4 days and had no air, so had to leave home. Then went to liquid> and have had no trouble, well I do have the hose running on the floor and> the dog thinking he is to guard it as he sleeps on it most of the time, or> hubby is tripping over it. I just catch it on the cabinet doors or get it> stuck under the door and things like that. But I don't like the portable to> use at home, I prefer the big liquid I need the water bottle connected to> mine as I get nose bleed and on blood thinners. > I always had a 12 hrs portable gas bottle on hand in case of emergency, or I> need to go for sometime. > > > Donna>

[Guest guest]

I have learned a few things about the Helios portable....the longer you leave the portable on the tank while you are filling it, the more likely it is to freeze.....I try to watch mine and when I'm home, I just refill it every 3 hours or so....After you are done filling the portable....you must keep the tank upright.....if the portable is tilted or jostled around, I find that it will stop pulsing.

I'm waiting for my company to bring me a new tank....I don't think the pressure in it is high enough....it even sounded different when I was filling my portable. It does say that it's full....but there is something that isn't right. One time I had a new tank delivered and it smelled wierd....kinda like dust....I thought it was me, but after hours of smelling dust, I called the company....they did bring me a new tank and it was fine. They must think I'm a wacko!

--Diane Quinlan dianequinlan@...

-------------- Original message --------------

Diane,

Liquid oxygen and the Helios is great....if it works. I would be getting ready to leave for a wedding or church...and SORRY CHARLIE, I AM FROZEN. After they told me that I could have one or the other...I had to choose tanks for mobility. For me, it is the best therapy just being able to get out of the house.

I got the chest length cannula so that the connection doesn't get caught on things so easily. The one that I have has a swivel connector right at chest level which keeps it from knotting up in the floor. You can even use a swivel at the other end. You can get swivels with two female ends or one male, one female, etc....there are several. The one I use right now is Swivel Connector #1225 and Nasal Cannula #1606 from Salter Labs. I am only 5' 2" and the tubing with 4 or 7 ft. lengths put the connector right at the floor. It gets hung under doors, furniture and everything. This of course gets hung onto door handles, etc. but is soooo much better for me. I have Apria and believe me I have fought the fight. I now have an e-mail dialogue with the manager and all my requests go through him. He is very nice. Apria is taking over the market. The more they monopolyze the market,

the less service they provide. And yes, it is all about money, like insurance and docs!

Another tip. I put the concentrator in the living room ....on carpet...less noise. We rarely use the living room. I run the tubing behind the couch and it is not in the middle of the floor. I do get wound up on toy trucks, etc. One day I had several little toy soldiers riding around on my tubing. Grandkids leave toys everywhere and they get onto the tubing. And yes, I some days I have temper tantrums from having my head jerked back when I am in a hurry or when some big foot steps on the line. But, oh to breathe, it is all worth it!

I know the tubing and dogs are a nuisance. So are babies. Have these three 3 year olds. All three were crawling at the same time. They all liked to chew on the tubing. For a long while I couldn't get far....and certainly not quickly!! Now, they like to pull it to torment me! They get in trouble with thier parents but I just make a game of it.

I don't know how you have made it with that liquid stuff this long. Wish it worked. Wouldn't you think that since they can put people out into space dangling around on a tube, they could provide a simple oxygen device that would be lightweight and workable. Dreaming, I suppose.

Whew, chatty this morning. Too much coffee already! It is only 5:45. Been up since 4.

Hugs for the day...

Joyce PF 1997

>> I want to get that printed on a Tshirt.....anyway....I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do..

....so I called them and they are delivering a new tank tomorrow morning. I was doing a few things getti> ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula.....no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!!! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather.....I fantasize about it!!!!!> Today went by fast....I had to run some errands.....took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter.....on the cashiers side of

the counter.....I said :they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > Today is Jack's 6th birthday.....so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > Thanks for letting me howl at you all for awhi

le. > Love, Diane> > --> Diane Quinlan > dianequinlan@...>

[Guest guest]

All cause we love you !!

Love and Prayers, Peggy 9/04 ipf

Joyce,

This is one of the reasons I love having this group to learn from. A couple of months ago a family friend really lobbied me hard to switch to the Helios system and I almost did it. She's a nurse in the home care field and I had every reason to believe she knew what she was talking about and I'm sure it must work for some people or in some circumstances but.... I talked to the RT at my doctor's office and mentioned Helios....'s face screwed up in a grimace and said..welllllll and she suggested she arrange to have it demonstrated for me which we did and the demonstrator had the thing freeze up on him. Now if the guy who's supposed to be impressing me with it can't use it....I'd never be able to 'make it work'.

I'm sticking with concentrator and tanks for now. I would like to get a portable concentrator at some point but they are expensive and I will always need tanks for exercise because of my ultra-high O2 requirements for aerobic activity.

I've learned so much from all of you and have undoubtedly been saved more aggravation and frustration than I'll ever know. Thanks to everyone for all the help you've given me just by being here!!

Beth IPF 06/06

Draw close. Hold hands. Life is short. God is good.

Re: Got O2??

Diane,

Liquid oxygen and the Helios is great....if it works. I would be getting ready to leave for a wedding or church...and SORRY CHARLIE, I AM FROZEN. After they told me that I could have one or the other...I had to choose tanks for mobility. For me, it is the best therapy just being able to get out of the house.

I got the chest length cannula so that the connection doesn't get caught on things so easily. The one that I have has a swivel connector right at chest level which keeps it from knotting up in the floor. You can even use a swivel at the other end. You can get swivels with two female ends or one male, one female, etc....there are several. The one I use right now is Swivel Connector #1225 and Nasal Cannula #1606 from Salter Labs. I am only 5' 2 " and the tubing with 4 or 7 ft. lengths put the connector right at the floor. It gets hung under doors, furniture and everything. This of course gets hung onto door handles, etc. but is soooo much better for me. I have Apria and believe me I have fought the fight. I now have an e-mail dialogue with the manager and all my requests go through him. He is very nice. Apria is taking over the market. The more they monopolyze the market, the less service they provide. And yes, it is all about money, like insurance and docs!

Another tip. I put the concentrator in the living room ....on carpet...less noise. We rarely use the living room. I run the tubing behind the couch and it is not in the middle of the floor. I do get wound up on toy trucks, etc. One day I had several little toy soldiers riding around on my tubing. Grandkids leave toys everywhere and they get onto the tubing. And yes, I some days I have temper tantrums from having my head jerked back when I am in a hurry or when some big foot steps on the line. But, oh to breathe, it is all worth it!

I know the tubing and dogs are a nuisance. So are babies. Have these three 3 year olds. All three were crawling at the same time. They all liked to chew on the tubing. For a long while I couldn't get far....and certainly not quickly!! Now, they like to pull it to torment me! They get in trouble with thier parents but I just make a game of it.

I don't know how you have made it with that liquid stuff this long. Wish it worked. Wouldn't you think that since they can put people out into space dangling around on a tube, they could provide a simple oxygen device that would be lightweight and workable. Dreaming, I suppose.

Whew, chatty this morning. Too much coffee already! It is only 5:45. Been up since 4.

Hugs for the day...

Joyce PF 1997

>

> I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do.....so I called them and they are delivering a new tank tomorrow morning. I was doing a few things getti

> ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!

> Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the counter..... I said :they don't give any thought to someone in a wheelchair, do they? " I got my chair up as close as I could and scribbled my name.

> Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow.

> Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better.

> Thanks for letting me howl at you all for awhile.

> Love, Diane

>

> --

> Diane Quinlan

> dianequinlan@ ...

>

[Guest guest]

Thanks Peggy....I love all of you too. You've been precious gifts to me in more ways than I can even begin to tell you.

Thank you Father for the gift of this group of souls. Bless us all, keep us safe in your care.

Breathe on me, breath of God,So shall I never die,But live with Thee, the perfect lifeOf Thine eternity

Beth IPF 06/06Draw close. Hold hands. Life is short. God is good.

Re: Got O2??Diane, Liquid oxygen and the Helios is great....if it works. I would be getting ready to leave for a wedding or church...and SORRY CHARLIE, I AM FROZEN. After they told me that I could have one or the other...I had to choose tanks for mobility. For me, it is the

best therapy just being able to get out of the house. I got the chest length cannula so that the connection doesn't get caught on things so easily. The one that I have has a swivel connector right at chest level which keeps it from knotting up in the floor. You can even use a swivel at the other end. You can get swivels with two female ends or one male, one female, etc....there are several. The one I use right now is Swivel Connector #1225 and Nasal Cannula #1606 from Salter Labs. I am only 5' 2" and the tubing with 4 or 7 ft. lengths put the connector right at the floor. It gets hung under doors, furniture and everything. This of course gets hung onto door handles, etc. but is soooo much better for me. I have Apria and believe me I have fought the fight. I now have an e-mail dialogue with the manager and all my requests go through him. He is very nice.

Apria is taking over the market. The more they monopolyze the market, the less service they provide. And yes, it is all about money, like insurance and docs! Another tip. I put the concentrator in the living room ....on carpet...less noise. We rarely use the living room. I run the tubing behind the couch and it is not in the middle of the floor. I do get wound up on toy trucks, etc. One day I had several little toy soldiers riding around on my tubing. Grandkids leave toys everywhere and they get onto the tubing. And yes, I some days I have temper tantrums from having my head jerked back when I am in a hurry or when some big foot steps on the line. But, oh to breathe, it is all worth it! I know the tubing and dogs are a nuisance. So are babies. Have these three 3 year olds. All

three were crawling at the same time. They all liked to chew on the tubing. For a long while I couldn't get far....and certainly not quickly!! Now, they like to pull it to torment me! They get in trouble with thier parents but I just make a game of it. I don't know how you have made it with that liquid stuff this long. Wish it worked. Wouldn't you think that since they can put people out into space dangling around on a tube, they could provide a simple oxygen device that would be lightweight and workable. Dreaming, I suppose. Whew, chatty this morning. Too much coffee already! It is only 5:45. Been up since 4. Hugs for the day... Joyce PF 1997

>> I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can

do.....so I called them and they are delivering a new tank tomorrow morning. I was doing a few things getti> ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the

counter..... I said :they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > Thanks for letting me howl at you all for awhile.

> Love, Diane> > --> Diane Quinlan > dianequinlan@ ...>

[Guest guest]

I've been reading the posts about the different systems. I've never had liquid but I think I'm glad now. I have the home refill system. It's easy to refill and lasts approx. 4-5 hours ( I think that's what it is) on 2 pulse. I put it in my BOA and can take it easily anyplace. I go to the beach and since I have 3 tanks I never come close to running out.

Have a great day everyone. Sher ipf 5-06

Re: Got O2??Diane, Liquid oxygen and the Helios is great....if it works. I would be getting ready to leave for a wedding or church...and SORRY CHARLIE, I AM FROZEN. After they told me that I could have one or the other...I had to choose tanks for mobility. For me, it is the best therapy just being able to get out of the house. I got the chest length cannula so that the connection doesn't get caught on things so easily. The one that I have has a swivel connector right at chest level which keeps it from knotting up in the floor. You can even use a swivel at the other end. You can get swivels with two female ends or one male, one female, etc....there are several. The one I use right now is Swivel Connector #1225 and Nasal Cannula #1606 from Salter Labs. I am only 5' 2" and the tubing with 4 or 7 ft. lengths put the connector right at the floor. It gets hung under doors, furniture and everything. This of course gets hung onto door handles, etc. but is soooo much better for me. I have Apria and believe me I have fought the fight. I now have an e-mail dialogue with the manager and all my requests go through him. He is very nice. Apria is taking over the market. The more they monopolyze t! he market, the less service they provide. And yes, it is all about money, like insurance and docs! Another tip. I put the concentrator in the living room ....on carpet...less noise. We rarely use the living room. I run the tubing behind the couch and it is not in the middle of the floor. I do get wound up on toy trucks, etc. One day I had several little toy soldiers riding around on my tubing. Grandkids leave toys everywhere and they get onto the tubing. And yes, I some days I have temper tantrums from having my head jerked back when I am in a hurry or when some big foot steps on the line. But, oh to breathe, it is all worth it! I know the tubing and dogs are a nuisance. So are babies. Have these three 3 year olds. All three were crawling at the same time. They all liked to chew on the tubing. For a long while I couldn't get far....and certainly not quickly!! Now, they like to pull it to torment me! They get in trouble with thier parents but I just make a game of it. I don't know how you have made it with that liquid stuff this long. Wish it worked. Wouldn't you think that since they can put people out into space dangling around on a tube, they could provide a simple oxygen device that would be lightweight and workable. Dreaming, I suppose. Whew, chatty this morning. Too much coffee already! It is only 5:45. Been up since 4. Hugs for the day... Joyce PF 1997 >> I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do.....so I called them and they are delivering a new tank tomorrow morning. I was doing a few thing! s getti> ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the counter..... I said :they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > Thanks for letting me howl at you all for awhile. > Love, Diane> > --> Diane Quinlan > dianequinlan@ ...>

[Guest guest]

Joyce...are Helios and liquid the same thing? Sher

Re: Got O2??Diane, Liquid oxygen and the Helios is great....if it works. I would be getting ready to leave for a wedding or church...and SORRY CHARLIE, I AM FROZEN. After they told me that I could have one or the other...I had to choose tanks for mobility. For me, it is the best therapy just being able to get out of the house. I got the chest length cannula so that the connection doesn't get caught on things so easily. The one that I have has a swivel connector right at chest level which keeps it from knotting up in the floor. You can even use a swivel at the other end. You can get swivels with two female ends or one male, one female, etc....there are several. The one I use right now is Swivel Connector #1225 and Nasal Cannula #1606 from Salter Labs. I am only 5' 2" and the tubing with 4 or 7 ft. lengths put the connector right at the floor. It gets hung under doors, furniture and everything. This of course gets hung onto door handles, etc. but is soooo much better for me. I have Apria and believe me I have fought the fight. I now have an e-mail dialogue with the manager and all my requests go through him. He is very nice. Apria is taking over the market. The more they monopolyze t! he market, the less service they provide. And yes, it is all about money, like insurance and docs! Another tip. I put the concentrator in the living room ....on carpet...less noise. We rarely use the living room. I run the tubing behind the couch and it is not in the middle of the floor. I do get wound up on toy trucks, etc. One day I had several little toy soldiers riding around on my tubing. Grandkids leave toys everywhere and they get onto the tubing. And yes, I some days I have temper tantrums from having my head jerked back when I am in a hurry or when some big foot steps on the line. But, oh to breathe, it is all worth it! I know the tubing and dogs are a nuisance. So are babies. Have these three 3 year olds. All three were crawling at the same time. They all liked to chew on the tubing. For a long while I couldn't get far....and certainly not quickly!! Now, they like to pull it to torment me! They get in trouble with thier parents but I just make a game of it. I don't know how you have made it with that liquid stuff this long. Wish it worked. Wouldn't you think that since they can put people out into space dangling around on a tube, they could provide a simple oxygen device that would be lightweight and workable. Dreaming, I suppose. Whew, chatty this morning. Too much coffee already! It is only 5:45. Been up since 4. Hugs for the day... Joyce PF 1997 >> I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do.....so I called them and they are delivering a new tank tomorrow morning. I was doing a few thing! s getti> ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the counter..... I said :they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > Thanks for letting me howl at you all for awhile. > Love, Diane> > --> Diane Quinlan > dianequinlan@ ...>

[Guest guest]

The home refill concept intrigues me Sher. It really sounds like a great idea. How long does it take to refill a tank? Can you be using the concentrator while your refilling a tank (like overnight for instance?) Just wondering....

Beth IPF 06/06Draw close. Hold hands. Life is short. God is good.

Re: Got O2??Diane, Liquid oxygen and the Helios is great....if it works. I would be getting ready to leave for a wedding or church...and SORRY CHARLIE, I AM FROZEN. After they told me that I could have one or the other...I had to choose tanks for mobility. For me, it is the

best therapy just being able to get out of the house. I got the chest length cannula so that the connection doesn't get caught on things so easily. The one that I have has a swivel connector right at chest level which keeps it from knotting up in the floor. You can even use a swivel at the other end. You can get swivels with two female ends or one male, one female, etc....there are several. The one I use right now is Swivel Connector #1225 and Nasal Cannula #1606 from Salter Labs. I am only 5' 2" and the tubing with 4 or 7 ft. lengths put the connector right at the floor. It gets hung under doors, furniture and everything. This of course gets hung onto door handles, etc. but is soooo much better for me. I have Apria and believe me I have fought the fight. I now have an e-mail dialogue with the manager and all my requests go through him. He is very nice.

Apria is taking over the market. The more they monopolyze t! he market, the less service they provide. And yes, it is all about money, like insurance and docs! Another tip. I put the concentrator in the living room ....on carpet...less noise. We rarely use the living room. I run the tubing behind the couch and it is not in the middle of the floor. I do get wound up on toy trucks, etc. One day I had several little toy soldiers riding around on my tubing. Grandkids leave toys everywhere and they get onto the tubing. And yes, I some days I have temper tantrums from having my head jerked back when I am in a hurry or when some big foot steps on the line. But, oh to breathe, it is all worth it! I know the tubing and dogs are a nuisance. So are babies. Have these three 3 year olds.

All three were crawling at the same time. They all liked to chew on the tubing. For a long while I couldn't get far....and certainly not quickly!! Now, they like to pull it to torment me! They get in trouble with thier parents but I just make a game of it. I don't know how you have made it with that liquid stuff this long. Wish it worked. Wouldn't you think that since they can put people out into space dangling around on a tube, they could provide a simple oxygen device that would be lightweight and workable. Dreaming, I suppose. Whew, chatty this morning. Too much coffee already! It is only 5:45. Been up since 4. Hugs for the day... Joyce PF 1997

>> I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can

do.....so I called them and they are delivering a new tank tomorrow morning. I was doing a few thing! s getti> ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the

counter..... I said :they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > Thanks for letting me howl at you all for awhile.

> Love, Diane> > --> Diane Quinlan > dianequinlan@ ...>

[Guest guest]

Sher,

Helios is the little 4 pound cannister portable that you can wear on your belt or carry, etc. You fill it on the liquid 'Mama Ship'. The larger one is called Marathon. I loved the Helios portable but could not depend on it to be ready when I was ready or to hold gas. It is a good idea but not functional.

Sher if I got the refill system like you have, what would I do if we were traveling. Right now the M6 (taller than the one you have but not as fat) lasts about 1 1/2 hours. Some days I am gone from home longer. Also, I have had times when I would be out and hook up a new tank and it would be empty. Yes, it happens. So, 3 tanks would not do it for me. We carry 6 at least with us at all times. I can put them in a backpack and use the seatbelt to keep them upright and stable. It would be nice to have a refill system because I have forty eleven tanks in my garage by the end of two weeks. Yes, I am a run around. When I am able to stand I try to go.

Hugs, Joyce PF 1997

> >> > I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do.....so I called them and they are delivering a new tank tomorrow morning. I was doing a few thing! s getti> > ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> > Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the counter..... I said :they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > > Thanks for letting me howl at you all for awhile. > > Love, Diane> > > > --> > Diane Quinlan > > dianequinlan@ ...> >>

[Guest guest]

Beth...yes, I think you CAN use/refill at the same time. I'm not absolutely positive because I don't do that...I fill mine during the day and it takes about 45 min. Have to have a compressor w/concentrator. My tank weighs less and I need that because of arthritis. When I go anyplace I take 1 to 3 tanks...depending on what I think I'll use.

Remember, I do not use 02 except with activity and to be honest, I often don't use it when I think "I'm not doing anything much". I never use it around the house, but I'm fairly inactive.

I like the homefill system. Easy to fill, just 'snap' it onto the slot on the compressor and turn it on. It will automatically turn off when full. Hope this helps. Sher ipf 5-06

Re: Got O2??Diane, Liquid oxygen and the Helios is great....if it works. I would be getting ready to leave for a wedding or church...and SORRY CHARLIE, I AM FROZEN. After they told me that I could have one or the other...I had to choose tanks for mobility. For me, it is ! the best therapy just being able to get out of the house. I got the chest length cannula so that the connection doesn't get caught on things so easily. The one that I have has a swivel connector right at chest level which keeps it from knotting up in the floor. You can even use a swivel at the other end. You can get swivels with two female ends or one male, one female, etc....there are several. The one I use right now is Swivel Connector #1225 and Nasal Cannula #1606 from Salter Labs. I am only 5' 2" and the tubing with 4 or 7 ft. lengths put the connector right at the floor. It gets hung under doors, furniture and everything. This of course gets hung onto door handles, etc. but is soooo much better for me. I have Apria and believe me I have fought the fight. I now have an e-mail dialogue with the manager and all my requests go through him. He is very nice. Apria is taking over the market. The more they monopolyze t! he market, the less service they provide. And yes, it is all about money, like insurance and docs! Another tip. I put the concentrator in the living room ....on carpet...less noise. We rarely use the living room. I run the tubing behind the couch and it is not in the middle of the floor. I do get wound up on toy trucks, etc. One day I had several little toy soldiers riding around on my tubing. Grandkids leave toys everywhere and they get onto the tubing. And yes, I some days I have temper tantrums from having my head jerked back when I am in a hurry or when some big foot steps on the line. But, oh to breathe, it is all worth it! I know the tubing and dogs are a nuisance. So are babies. Have these three 3 year olds. All three were crawling at the same time. They all liked to chew on the tubing. For a long while I couldn't get far....and certainly not quickly!! Now, they like to pull it to torment me! They get in trouble with thier parents but I just make a game of it. I don't know how you have made it with that liquid stuff this long. Wish it worked. Wouldn't you think that since they can put people out into space dangling around on a tube, they could provide a simple oxygen device that would be lightweight and workable. Dreaming, I suppose. Whew, chatty this morning. Too much coffee already! It is only 5:45. Been up since 4. Hugs for the day... Joyce PF 1997 >> I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do.....so I called them and they are delivering a new tank tomorrow morning. I was doing a few thing! s getti> ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the counter..... I said :they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > Thanks for letting me howl at you all for awhile. > Love, Diane> > --> Diane Quinlan > dianequinlan@ ...>

[Guest guest]

Joyce...I admire you (and others) sooo much for your get-up-and-go!

I am not like that...........the pf isn't really the cause...it's chronic pain.

I don't need as much o2 as you do and so I'm not sure I'm the one to ask questions. If my memory serves me, and often it's off base, I think uses this homefill system. You can call RT at Apria ( hope for the best) and they can give you the "info".

It was the helios then that I was going to use at one time but the RT told me it often freezes and so I passed. My arthritis plays a huge part in MY decisions for a system.

When we were organizing our cruise I was told there are 2 portable concentrators....I'm wondering if ONE of them may be better for ME.

Gosh, all those tanks must be a pain but I know you do what ya gotta.

As I progress I will want all the info. I read here. Thanks. Sher ipf 5-06

Re: Got O2??

Sher,

Helios is the little 4 pound cannister portable that you can wear on your belt or carry, etc. You fill it on the liquid 'Mama Ship'. The larger one is called Marathon. I loved the Helios portable but could not depend on it to be ready when I was ready or to hold gas. It is a good idea but not functional.

Sher if I got the refill system like you have, what would I do if we were traveling. Right now the M6 (taller than the one you have but not as fat) lasts about 1 1/2 hours. Some days I am gone from home longer. Also, I have had times when I would be out and hook up a new tank and it would be empty. Yes, it happens. So, 3 tanks would not do it for me. We carry 6 at least with us at all times. I can put them in a backpack and use the seatbelt to keep them upright and stable. It would be nice to have a refill system because I have forty eleven tanks in my garage by the end of two weeks. Yes, I am a run around. When I am able to stand I try to go.

Hugs, Joyce PF 1997

> >> > I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do.....so I called them and they are delivering a new tank tomor! row morning. I was doing a few thing! s getti> > ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> > Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the counter..... I said :they don't give any thought to someon! e in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > > Thanks for letting me howl at you all for awhile. > > Love, Diane> > >! > --> > Diane Quinlan > > dianequinlan@ ...> >>

[Guest guest]

Sher,

Thanks... I really like the idea of being able to fill my own tanks from a concentrator. My problem is I'm probably going to need a "mix" of systems for awhile because of what I need when I exercise. I don't know if I can fill the big "D" tanks on one of the refill systems. ( I was told you can't) and I need the D tanks for when I exercise. I use two of them in an hour on the treadmill (with the venti mask, 50% O2 mix at 12 liters per minute)

I finally got the regulator I need for the tanks. Now I can start the Wellness program and keep up the exercise so I can continue getting my weight down so that the transplant option is that much more available to me. I'm telling you I would never have believed how my life has changed in a year. Un-flippin-believeable.

Just keep breathing, right??

Beth IPF 06/06Draw close. Hold hands. Life is short. God is good.

Re: Got O2??Diane, Liquid oxygen and the Helios is great....if it works. I would be getting ready to leave for a wedding or church...and SORRY CHARLIE, I AM FROZEN. After they told me that I could have one or the other...I had to choose tanks for mobility. For me, it is ! the

best therapy just being able to get out of the house. I got the chest length cannula so that the connection doesn't get caught on things so easily. The one that I have has a swivel connector right at chest level which keeps it from knotting up in the floor. You can even use a swivel at the other end. You can get swivels with two female ends or one male, one female, etc....there are several. The one I use right now is Swivel Connector #1225 and Nasal Cannula #1606 from Salter Labs. I am only 5' 2" and the tubing with 4 or 7 ft. lengths put the connector right at the floor. It gets hung under doors, furniture and everything. This of course gets hung onto door handles, etc. but is soooo much better for me. I have Apria and believe me I have fought the fight. I now have an e-mail dialogue with the manager and all my requests go through him. He is very nice.

Apria is taking over the market. The more they monopolyze t! he market, the less service they provide. And yes, it is all about money, like insurance and docs! Another tip. I put the concentrator in the living room ....on carpet...less noise. We rarely use the living room. I run the tubing behind the couch and it is not in the middle of the floor. I do get wound up on toy trucks, etc. One day I had several little toy soldiers riding around on my tubing. Grandkids leave toys everywhere and they get onto the tubing. And yes, I some days I have temper tantrums from having my head jerked back when I am in a hurry or when some big foot steps on the line. But, oh to breathe, it is all worth it! I know the tubing and dogs are a nuisance. So are babies. Have these three 3 year olds.

All three were crawling at the same time. They all liked to chew on the tubing. For a long while I couldn't get far....and certainly not quickly!! Now, they like to pull it to torment me! They get in trouble with thier parents but I just make a game of it. I don't know how you have made it with that liquid stuff this long. Wish it worked. Wouldn't you think that since they can put people out into space dangling around on a tube, they could provide a simple oxygen device that would be lightweight and workable. Dreaming, I suppose. Whew, chatty this morning. Too much coffee already! It is only 5:45. Been up since 4. Hugs for the day... Joyce PF 1997

>> I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can

do.....so I called them and they are delivering a new tank tomorrow morning. I was doing a few thing! s getti> ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the

counter..... I said :they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > Thanks for letting me howl at you all for awhile.

> Love, Diane> > --> Diane Quinlan > dianequinlan@ ...>

[Guest guest]

Beth...I have Apria and they allow only ONE portable system at a time. That is my homefill........I also have the large concentrator (and compressor for filling). I use the concentrator for treadmill. Sometimes when I am short of breath I use the little tank for a couple of minutes. I can use that (tank sitting on the floor by the sofa) easier then stringing the tube to the concentrator.( I don't leave tubing connected from concentrator to treadmill in a second bedroom, all the time.)

You cannot refill any other tank on the homefill system.

Do you have a concentrator? If so, why doesn't that work when you are on the treadmill?

I am no longer in rehab because we just couldn't continue to pay 200$/mo-co-pay. We bought the treadmill instead. I don't use it as I should. I'm coming to terms with the fact I am in deep denial. I think, why use ANYTHING, it won't change anything. I'm not truly believing I HAVE pf....regardless of all the tests that most of us have taken. My Dr. hasn't explained to me how HE KNOWS it IS pf. He will next visit though! I will insist. When I asked him about the blood test (is it HRCT?) that can confirm, he said he didn't think I needed it. Well, next visit I want to know why not........so many of you have had this test.

Anyway. I don't know where this all came from but I will not delete it. It's honest. And 'denial' is something that has always been absolutely foreign to me. I was a counselor for 25 years and denial is what I worked through w/ people all the time. I've always been brutally honest and sometimes honestly brutal. I've never called anything less than it is! I've had one chronic condition after another and just went with the flow. I'm tired. I'm tired of pain, I'm tired of 'being brave' and 'doing it anyway'. I think I'm tired of living............

"I'm telling you I would never have believed how my life has changed in a year. Un-flippin-believable."

Your last line says it all.

Thanks for reading a long post. Hugs to you, Sher ipf 5-06

Re: Got O2??Diane, Liquid oxygen and the Helios is great....if it works. I would be getting ready to leave for a wedding or church...and SORRY CHARLIE, I AM FROZEN. After they told me that I could have one or the other...I had to choose tanks for mobility. For me, it is ! ! the best therapy just being able to get out of the house. I got the chest length cannula so that the connection doesn't get caught on things so easily. The one that I have has a swivel connector right at chest level which keeps it from knotting up in the floor. You can even use a swivel at the other end. You can get swivels with two female ends or one male, one female, etc....there are several. The one I use right now is Swivel Connector #1225 and Nasal Cannula #1606 from Salter Labs. I am only 5' 2" and the tubing with 4 or 7 ft. lengths put the connector right at the floor. It gets hung under doors, furniture and everything. This of course gets hung onto door handles, etc. but is soooo much better for me. I have Apria and believe me I have fought the fight. I now have an e-mail dialogue with the manager and all my requests go through him. He is very nice. Apria is taking over the market. The more they monopolyze t! he market, the less service they provide. And yes, it is all about money, like insurance and docs! Another tip. I put the concentrator in the living room ....on carpet...less noise. We rarely use the living room. I run the tubing behind the couch and it is not in the middle of the floor. I do get wound up on toy trucks, etc. One day I had several little toy soldiers riding around on my tubing. Grandkids leave toys everywhere and they get onto the tubing. And yes, I some days I have temper tantrums from having my head jerked back when I am in a hurry or when some big foot steps on the line. But, oh to breathe, it is all worth it! I know the tubing and dogs are a nuisance. So are babies. Have these three 3 year olds. All three were crawling at the same time. They all liked to chew on the tubing. For a long while I couldn't get far....and certainly not quickly!! Now, they like to pull it to torment me! They get in trouble with thier parents but I just make a game of it. I don't know how you have made it with that liquid stuff this long. Wish it worked. Wouldn't you think that since they can put people out into space dangling around on a tube, they could provide a simple oxygen device that would be lightweight and workable. Dreaming, I suppose. Whew, chatty this morning. Too much coffee already! It is only 5:45. Been up since 4. Hugs for the day... Joyce PF 1997 >> I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do.....so I called them and they are delivering a new tank tomorrow morning. I was doing a few thing! s getti> ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the counter..... I said :they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > Thanks for letting me howl at you all for awhile. > Love, Diane> > --> Diane Quinlan > dianequinlan@ ...>

[Guest guest]

Sher,

RE: Gosh, all those tanks must be a pain

I just keep them in the garage. Pick them up on the way out. No problem.

Hugs, Joyce PF 1997

> > >> > > I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do.....so I called them and they are delivering a new tank tomor! row morning. I was doing a few thing! s getti> > > ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> > > Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the counter..... I said :they don't give any thought to someon! e in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > > > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > > > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > > > Thanks for letting me howl at you all for awhile. > > > Love, Diane> > > > >! > --> > > Diane Quinlan > > > dianequinlan@ ...> > >> >>

[Guest guest]

Sher,

Don't compare yourself to a 'forty something'! You have a lot of pain that others do not have. Not only is it difficult to make yourself do anything at our age (I am 62) but having to walk into pain is a real deterrant. I don't excersize either. I went through rehab and have had two treadmills here and hung clothes on them. I know what I should do...especially now after the heart procedure....but I too am just tired. (and somewhat lazy) .

I try to move around as much as I can throughout the day and when I feel o.k. I get into the car and go. So, don't beat yourself up. Do the best you can and let it go.

Denial is sometimes a good thing. If we just really thought about it continually, we would go nuts! You do everything that you can do to seek out medical advice and follow orders. That is all you can do. Just live your life!

Hugs, Joyce PF 1997

> >> > I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do.....so I called them and they are delivering a new tank tomorrow morning. I was doing a few thing! s getti> > ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> > Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the counter..... I said :they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > > Thanks for letting me howl at you all for awhile. > > Love, Diane> > > > --> > Diane Quinlan > > dianequinlan@ ...> >>

[Guest guest]

Joyce, a lot of tanks give us a problem...we are in an upstairs apt with not a lot of extra space.

I'm sure praying that the Good Lord will provide us a more appropriate apt....DOWNSTAIRS.

I'm glad your tanks are a "no problem" for you. Sher

Re: Got O2??

Sher,

RE: Gosh, all those tanks must be a pain

I just keep them in the garage. Pick them up on the way out. No problem.

Hugs, Joyce PF 1997

> > >> > > I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I was! n't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do.....so I called them and they are delivering a new tank tomor! row morning. I was doing a few thing! s getti> > > ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so ! wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> > > Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the counter..... I said :they don't give any thought to someon! e in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > > > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't s! omething HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > > > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > > > Thanks for letting me howl at you all for awhile. > > > Love, Diane> > > > >! > --> > > Diane Quinlan > > > dianequinlan@ ...> > >> >>

[Guest guest]

No I have never had it freeze up on me. I have the big tank that i

use in the house. They come once a week to fill my tank as I am on

24/7 and have been on the liquid air for over a year now, and i

would never go back. The liquid air is easier for me to breath. My

nose would run more on the gas and you couldn't have water with it.

to help moisten the air. I do have to fill my portable tank about an

hour before I leave the house and it needs to charge up and you can

get a little frost on the bag from the bottem of the machine but

that is normal. I read the book that came with mine. And was

surprised to learn even more about being on the oxygen. I would

never go back. I have tried some gel stuff and it works some of the

time. I get sores in my nose too and that is because of the air, it

comes and goes. The conector on top will always frost over a little,

as the liquid is very cold. That is suppose to happen.

However my air gas man old me of one that froze over like an ice

cream cone. That is because the person filling the tank fills to

fast and/or incorrect pressure on the tank when filing. My air gas

man is Harlan and he is a doll. And we talk about everything, we

were talking about this just last week. sorry i do then to be long

winded.

>

>

> Donna,

>

> I am also on blood thinner and get nosebleeds. I use a humidifier

> bottle. I also use KY jelly (cheaper than Ayr) in my nose and

when I

> get sore I use Neosporin creme (not gel).

>

> Do you not have trouble with it freezing up when you refill the

> portable?

>

>

[Guest guest]

Sorry but the marathon is a portable tank that you fill from the 'mama

ship' that can last depending on the flow up to 11 hours. I stay

connected to the mama ship until i want to go somewhere, you are

suppose to fill approx one hour before using or system can freeze as

it needs to charge up. I have used the marathon portable on continous

3 fl for 5 hours, and yes outside temps can change the temp and make

evaporate faster. But then again when i had the bottle air , the one

that i had fill in the vechile hen to go somewhere and it was empty

and it wasn't hot either. So to each there owe. I have had several

people ask me and irecommend the liquid (helios) is just a name like

coke or pepsi.

>

>

> Sher,

>

> Helios is the little 4 pound cannister portable that you can wear on

> your belt or carry, etc. You fill it on the liquid 'Mama Ship'. The

> larger one is called Marathon.

[Guest guest]

Sher,

Thanks so much for the detailed reply. I guess I had it right that you can only fill specific tanks from the homefill. Sigh....I still think it's a great concept, unfortunately I'm totally dependent on the larger portable tanks for the treadmill.

I do have a big concentrator (I call it Darth because that's who it sounds like breathing in the corner of my bedroom) but it only puts out a maximum of 5 liters per minute. I need at least 12 liters per minute with a venti mask with the attachment that gives me a 50% O2/room air mix for aerobic exercise. So for me that means tanks and lots of them.

I do understand what you mean about denial and I think if your oxygen needs are fairly small it's easy to question and honestly Sher you should question it. I'm assuming you've had chest x-rays and a ct scan. Generally they say the diagnosis can be made from the ct scan so that's probably what you're doctor is using. By the way, unless I'm way off the HRCT is not a blood test but rather a High Resolution CT scan. It's a ct scan done with much more detail and the pictures are of thinner "slices" of lung that allow the radiologist to see more of the changes that have occured in the lung. If your doctor is able to see what he needs on the regular ct scan he may feel the hrct is not necessary. That doesn't mean you can't or shouldn't insist. It may be necessary for your own peace of mind, the biopsy was necessary for mine. Get what you need to be

able to cope. Only you can say what that is. You are entitled to an explanation from your doctor as to how he arrived at this particular diagnosis. Is it based on a ct scan? on your history of other illnesses that are associated with IPF? It's your body and your life, you are entitled to all the information he has.

I'm so fortunate having my sister the doctor to encourage me to advocate for myself and even teach me how, teach me the questions to ask. She's been a Godsend as have all my siblings in different ways.

I'm sorry you and any of us are going through this. All I can say is be patient with yourself. You were diagnosed only a month before I was. No one can say what an appropriate timeline is for "coming to terms" with this is. Do what you can to take care of yourself and cut yourself some slack girl! Of course you feel like crap, you're in pain, you can't do things you'd like to do and they tell you, you have this freakin fatal disease. I'm mean Sher let's call it like it is, it sucks! Sorry but the truth is the truth. Doesn't mean God isn't good, He is. Doesn't mean I've been abandoned, I haven't. Doesn't mean there aren't infinite possibilities for joy in my life, because there are but it does mean that I'll have moments, hours and days where I'm angry and sad and God knows how tired.

Sorry to have gone on like this, by now you know when I feel passionately about something I go on and on and on. If you had enough patience to read this, you're better than me. lol Sher you are deeply loved here in this group, I personally have drawn strength from you and am grateful you are in my life.

God bless you and God bless all of us!

Beth IPF 06/06Draw close. Hold hands. Life is short. God is good.

Re: Got O2??Diane, Liquid oxygen and the Helios is great....if it works. I would be getting ready to leave for a wedding or church...and SORRY CHARLIE, I AM FROZEN. After they told me that I could have one or the other...I had to choose tanks for mobility. For me, it is ! ! the

best therapy just being able to get out of the house. I got the chest length cannula so that the connection doesn't get caught on things so easily. The one that I have has a swivel connector right at chest level which keeps it from knotting up in the floor. You can even use a swivel at the other end. You can get swivels with two female ends or one male, one female, etc....there are several. The one I use right now is Swivel Connector #1225 and Nasal Cannula #1606 from Salter Labs. I am only 5' 2" and the tubing with 4 or 7 ft. lengths put the connector right at the floor. It gets hung under doors, furniture and everything. This of course gets hung onto door handles, etc. but is soooo much better for me. I have Apria and believe me I have fought the fight. I now have an e-mail dialogue with the manager and all my requests go through him. He is very nice.

Apria is taking over the market. The more they monopolyze t! he market, the less service they provide. And yes, it is all about money, like insurance and docs! Another tip. I put the concentrator in the living room ....on carpet...less noise. We rarely use the living room. I run the tubing behind the couch and it is not in the middle of the floor. I do get wound up on toy trucks, etc. One day I had several little toy soldiers riding around on my tubing. Grandkids leave toys everywhere and they get onto the tubing. And yes, I some days I have temper tantrums from having my head jerked back when I am in a hurry or when some big foot steps on the line. But, oh to breathe, it is all worth it! I know the tubing and dogs are a nuisance. So are babies. Have these three 3 year olds.

All three were crawling at the same time. They all liked to chew on the tubing. For a long while I couldn't get far....and certainly not quickly!! Now, they like to pull it to torment me! They get in trouble with thier parents but I just make a game of it. I don't know how you have made it with that liquid stuff this long. Wish it worked. Wouldn't you think that since they can put people out into space dangling around on a tube, they could provide a simple oxygen device that would be lightweight and workable. Dreaming, I suppose. Whew, chatty this morning. Too much coffee already! It is only 5:45. Been up since 4. Hugs for the day... Joyce PF 1997 ---

In Breathe-Support@ yahoogroups. com, dianequinlan@ ... wrote:>> I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do.....so I called

them and they are delivering a new tank tomorrow morning. I was doing a few thing! s getti> ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the counter..... I said

:they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > Thanks for letting me howl at you all for awhile. > Love,

Diane> > --> Diane Quinlan > dianequinlan@ ...>

[Guest guest]

Hi Girls P butting in with some info. I have the home fill system and concentrator. Yes the fifty foot hose gets caught on thing and I let out a few four letter world LOL. A empty tank takes about a hour to fill +/-. It is kind of noise on filling. Some times I shut it off in the middle of filling then restart it later. The concentrator has a water bottle to help the nose Had mine for 2 years. my company checks it out every 3 months. Make sure they check and replace the internal filter. P UIP 8/00 PH 6/06 http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat_detail.jsp?s=0 & prodID=IRC5LX & catOID=-536885301 http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat_detail.jsp?s=0 & prodID=IOH200 & catOID=-536885230 http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat_detail.jsp?s=0 & prodID=HF2PCL6BAG Beth wrote:

The home refill concept intrigues me Sher. It really sounds like a great idea. How long does it take to refill a tank? Can you be using the concentrator while your refilling a tank (like overnight for instance?) Just wondering.... Beth IPF 06/06Draw close. Hold hands. Life is short. God is good. Re: Got O2??Diane, Liquid oxygen and the Helios is great....if it works. I would be getting ready to leave for a wedding or church...and SORRY CHARLIE, I AM FROZEN. After they told me that I could have one or the other...I had to choose tanks for mobility. For me, it is the best therapy just being able to get out of the house. I got the chest length cannula so that the connection doesn't get caught on things so easily. The one that I have has a swivel connector right at chest level which keeps it from knotting up in the floor. You can even use a swivel at the other end. You can get swivels with two female ends or one male, one

female, etc....there are several. The one I use right now is Swivel Connector #1225 and Nasal Cannula #1606 from Salter Labs. I am only 5' 2" and the tubing with 4 or 7 ft. lengths put the connector right at the floor. It gets hung under doors, furniture and everything. This of course gets hung onto door handles, etc. but is soooo much better for me. I have Apria and believe me I have fought the fight. I now have an e-mail dialogue with the manager and all my requests go through him. He is very nice. Apria is taking over the market. The more they monopolyze t! he market, the less service they provide. And yes, it is all about money, like insurance and docs! Another tip. I put the concentrator in the living room ....on carpet...less noise. We rarely use the living room. I run the tubing behind the couch and it is not in the middle of the

floor. I do get wound up on toy trucks, etc. One day I had several little toy soldiers riding around on my tubing. Grandkids leave toys everywhere and they get onto the tubing. And yes, I some days I have temper tantrums from having my head jerked back when I am in a hurry or when some big foot steps on the line. But, oh to breathe, it is all worth it! I know the tubing and dogs are a nuisance. So are babies. Have these three 3 year olds. All three were crawling at the same time. They all liked to chew on the tubing. For a long while I couldn't get far....and certainly not quickly!! Now, they like to pull it to torment me! They get in trouble with thier parents but I just make a game of it. I don't know how you have made it with that liquid stuff this long. Wish it worked.

Wouldn't you think that since they can put people out into space dangling around on a tube, they could provide a simple oxygen device that would be lightweight and workable. Dreaming, I suppose. Whew, chatty this morning. Too much coffee already! It is only 5:45. Been up since 4. Hugs for the day... Joyce PF 1997 >> I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably

freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do.....so I called them and they are delivering a new tank tomorrow morning. I was doing a few thing! s getti> ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how

hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the counter..... I said :they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can

get my oxygen straightened out, I'll do it tomorrow. > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > Thanks for letting me howl at you all for awhile. > Love, Diane> > --> Diane Quinlan > dianequinlan@ ...>

Stay in the know. Pulse on the new Yahoo.com. Check it out.

[Guest guest]

Joyce...your reply is so appreciated. I was preparing for the 'shoulda-coulda-woulda' and I 'would feel better'....I didn't get that. I chuckled at you hanging clothes on your treadmill! I couldn't hang anything on ours...Rich is 76 and 'rides' that damn thing an hour every day and then does push-ups and then played golf today.

I appreciate the understanding...you said do the best I can and let it go. Thanks Joyce. I'm feeling guilty because I don't do what so many of you do. Seems like those of you I really admire and listen too are up and going and fighting.....and I'm not.

It DOES HELP to "get permission" to "do the best I can and let it go".

To someone who has been there......hugs to you. Sher ipf 5-06

Re: Got O2??

Sher,

Don't compare yourself to a 'forty something'! You have a lot of pain that others do not have. Not only is it difficult to make yourself do anything at our age (I am 62) but having to walk into pain is a real deterrant. I don't excersize either. I went through rehab and have had two treadmills here and hung clothes on them. I know what I should do...especially now after the heart procedure....but I too am just tired. (and somewhat lazy) .

I try to move around as much as I can throughout the day and when I feel o.k. I get into the car and go. So, don't beat yourself up. Do the best you can and let it go.

Denial is sometimes a good thing. If we just really thought about it continually, we would go nuts! You do everything that you can do to seek out medical advice and follow orders. That is all you can do. Just live your life!

Hugs, Joyce PF 1997

> >> > I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it w! ill thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do.....so I called them and they are delivering a new tank tomorrow morning. I was doing a few thing! s getti> > ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on ! the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> > Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the counter..... I said :they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it! tomorrow. > > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > > Thanks for letting me howl at you all for awhile. > > Love, Diane> > > > --> > Diane Quinlan > > dianequinlan@ ...> >>

[Guest guest]

Beth...yes I've had all the testing. From x-ray to Cscan to PFT to 6 min walk to full pulmonary workup. In fact I had two Cscans. So I suppose those things would be definitive enough.

I used the wrong word...hrct...I mean the blood test that can confirm pf.

I know a lot of you have had that and recommend it for the info. it gives.

Thank you for your understanding and appreciation for my contribution to the group. Ditto.

God Bless you too. Sher ipf 5-06

Re: Got O2??Diane, Liquid oxygen and the Helios is great....if it works. I would be getting ready to leave for a wedding or church...and SORRY CHARLIE, I AM FROZEN. After they told me that I could have one or the other...I had to choose tanks for mobility. For me, it is ! ! ! the best therapy just being able to get out of the house. I got the chest length cannula so that the connection doesn't get caught on things so easily. The one that I have has a swivel connector right at chest level which keeps it from knotting up in the floor. You can even use a swivel at the other end. You can get swivels with two female ends or one male, one female, etc....there are several. The one I use right now is Swivel Connector #1225 and Nasal Cannula #1606 from Salter Labs. I am only 5' 2" and the tubing with 4 or 7 ft. lengths put the connector right at the floor. It gets hung under doors, furniture and everything. This of course gets hung onto door handles, etc. but is soooo much better for me. I have Apria and believe me I have fought the fight. I now have an e-mail dialogue with the manager and all my requests go through him. He is very nice. Apria is taking over the market. The more they monopolyze t! he market, the less service they provide. And yes, it is all about money, like insurance and docs! Another tip. I put the concentrator in the living room ....on carpet...less noise. We rarely use the living room. I run the tubing behind the couch and it is not in the middle of the floor. I do get wound up on toy trucks, etc. One day I had several little toy soldiers riding around on my tubing. Grandkids leave toys everywhere and they get onto the tubing. And yes, I some days I have temper tantrums from having my head jerked back when I am in a hurry or when some big foot steps on the line. But, oh to breathe, it is all worth it! I know the tubing and dogs are a nuisance. So are babies. Have these three 3 year olds. All three were crawling at the same time. They all liked to chew on the tubing. For a long while I couldn't get far....and certainly not quickly!! Now, they like to pull it to torment me! They get in trouble with thier parents but I just make a game of it. I don't know how you have made it with that liquid stuff this long. Wish it worked. Wouldn't you think that since they can put people out into space dangling around on a tube, they could provide a simple oxygen device that would be lightweight and workable. Dreaming, I suppose. Whew, chatty this morning. Too much coffee already! It is only 5:45. Been up since 4. Hugs for the day... Joyce PF 1997 >> I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will probably freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do.....so I called them and they are delivering a new tank tomorrow morning. I was doing a few thing! s getti> ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the counter..... I said :they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > Thanks for letting me howl at you all for awhile. > Love, Diane> > --> Diane Quinlan > dianequinlan@ ...>

[Guest guest]

I ordered shorter tubing. I think it's 21 feet. Driver also told me to wind up the excess tubing and put it in the Velcro strap there on the back. Both work better than 50 ft of hose on the floor. Sher

Re: Got O2??Diane, Liquid oxygen and the Helios is great....if it works. I would be getting ready to leave for a wedding or church...and SORRY CHARLIE, I AM FROZEN. After they told me that I could have one or the other...I had to choose tanks for mobility. For me, it is the best therapy just being able to get out of the house. I got the chest length cannula so that the connection doesn't get caught on things so easily. The one that I have has a swivel connector right at chest level which keeps it from knotting up in the floor. You can even use a swivel at the other end. You can get swivels with two female ends or one ! male, one female, etc....there are several. The one I use right now is Swivel Connector #1225 and Nasal Cannula #1606 from Salter Labs. I am only 5' 2" and the tubing with 4 or 7 ft. lengths put the connector right at the floor. It gets hung under doors, furniture and everything. This of course gets hung onto door handles, etc. but is soooo much better for me. I have Apria and believe me I have fought the fight. I now have an e-mail dialogue with the manager and all my requests go through him. He is very nice. Apria is taking over the market. The more they monopolyze t! he market, the less service they provide. And yes, it is all about money, like insurance and docs! Another tip. I put the concentrator in the living room ....on carpet...less noise. We rarely use the living room. I run the tubing behind the couch and it is not in the middle of th! e floor. I do get wound up on toy trucks, etc. One day I had several little toy soldiers riding around on my tubing. Grandkids leave toys everywhere and they get onto the tubing. And yes, I some days I have temper tantrums from having my head jerked back when I am in a hurry or when some big foot steps on the line. But, oh to breathe, it is all worth it! I know the tubing and dogs are a nuisance. So are babies. Have these three 3 year olds. All three were crawling at the same time. They all liked to chew on the tubing. For a long while I couldn't get far....and certainly not quickly!! Now, they like to pull it to torment me! They get in trouble with thier parents but I just make a game of it. I don't know how you have made it with that liquid stuff this long. Wish it worked! . Wouldn't you think that since they can put people out into space dangling around on a tube, they could provide a simple oxygen device that would be lightweight and workable. Dreaming, I suppose. Whew, chatty this morning. Too much coffee already! It is only 5:45. Been up since 4. Hugs for the day... Joyce PF 1997 >> I want to get that printed on a Tshirt.....anyway. ...I have toughed it out with this liquid oxygen delivery system for 2 years now and I think I'm done. When it works, it's great.....but it's very finicky....freezes very easily and then the portable doesn't work.....if the portable gets really low cause I wasn't watching it, it will proba! bly freeze....they say just wait 10 minutes and it will thaw out....WRONG! This morning, I got a new tank of liquid.....my portable was really full, so I didn't need to refill it until after lunch.....while I was filling it...the oxygen sounded different and it was taking forever to fill my portable. It never really filled the portable to the top.....but it should've worked....the demand didn't work at all.....I tried this many many times....no go....then, I thought....OK, just use the continuous and call the company and see what they can do.....so I called them and they are delivering a new tank tomorrow morning. I was doing a few thing! s getti> ng ready for dinner....and I started to feel awful.....found out that nothing was coming out of the nasal cannula..... no continuous, no demand....nothing. So, I got the long tubing and a humidity bottle and am using the oxygen right from the tank. That was about 5 hours ago....I'm so wound up because it made me remember how hard it was to function with all that tubing on the floor.....getting caught on a chair leg....a dog sleeping on it....me tripping over it....UGH!!! ! It's also hot and humid here and I want it to be FALL!! Nice, dry, cool weather..... I fantasize about it!!!!!> Today went by fast....I had to run some errands..... took my wheelchair into Lowes....it was fun going up and down every isle.....was very hard to pay for my stuff, tho....I used my debit card....the stupid thing was bolted to the counter..... on the cashiers side of the counter..... I said :they don't give any thought to someone in a wheelchair, do they?" I got my chair up as close as I could and scribbled my name. > Today is Jack's 6th birthday.... .so he got 2 new balls to play with and he's got a big smile on his face and that little tail has been wagging since I brought them home. I was going to give him a bath...but decided that wasn't something HE would like for his special day....so, if I can get my oxygen straightened out, I'll do it tomorrow. > Maybe I can call the home care company and see what other devices they have.....if they don't, I guess I'll have to find another company. I have personal experience with Apria when I was working as a home care nurse....I thought they were a terrible company with no compassion for anyone or anything, except their insurance checks. I hate to think about changing my system, but maybe a different one will be much better. > Thanks for letting me howl at you all for awhile. > Love, Diane> > --> Diane Quinlan > dianequinlan@ ...>

Stay in the know. Pulse on the new Yahoo.com. Check it out.