Oxygen

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Joe - Good for you!! I think going out for the first time is the hardest...it was hard to see my family for the first time, too....but once you do it, it gets a lot easier. This list is a wonderful way to help each other...we need to keep participating in life....and never give up hope.

--Diane Quinlan dianequinlan@...

-------------- Original message -------------- Hello Group, I think I know how you feel about wearing oxygen inpublic. I carried mine to walmarts today. It was the 1st time I hadventured away from the house with it.

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I am so grateful for this group. Symptoms that seem somehow detached show themselves as commonplace. I have a question-off the wall-how about gall bladder issues. My husband's PC thought prednosone might be to blame.

Carman

-------------- Original message -------------- Hello Group, I think I know how you feel about wearing oxygen inpublic. I carried mine to walmarts today. It was the 1st time I hadventured away from the house with it. When you can't get your breatha taste of oxygen feels like a cool drink of water. Taking a showergot to be a task without oxygen so I got a 14 foot hose and hung itover the shower curtain. It made a lot of difference. I don't needit when I'm resting. For several years I had to sleep in a recliner.I could not get my breath laying in a bed. From reading yourmessages I see I'm not the only one with sleep problems. It must gowith the teritory. Reading your stories and messages gives me hopethat some of these meds and herbs might work. I use a sleep machineand it works good for me. Taking natur leaf and nac. Will let youknow if it helps. Keep the messages coming and try to stay strong. With regards---Joe Singletary

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Joe,go

I found your letter encouraging, as I myself have dreaded going on oxygen. As part of the preliminary testing for inclusion in the "Inspire" trial, the U of Chicago had me do a 6 minute walk test, and told me that by their standards, I should start using it. They want me to contact my pulmonologist at the VA hospital for a 2nd test, and see what he thinks.

Also, at U of C, they said they don't want me taking any supplements during the trial program, if I'm accepted. That surprised me, as it seems as a lot of people in this group do take them. I think I'll ask for clarification at my next trip up there.

Arlen

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Just exactly where do you get an ox meter that goes on your finger. I have been feeling like I really need one. Barb jose singletary wrote: The 6 minute walk indicated that my blood ox was falling below 90 back in october. The DR put me on ox as needed. How do you know when it is needed. You go on line and order a ox meter that goes on your finger. Thats how I did it. With any activity my blood ox drops into the 80's and I turn the ox on. I have a cpap and the concentrator is piped into it while sleeping. When I leave the house to go to store. It will be in the 80's when I don't take the ox with me. From reading the posts from this

group, you need to try to keep your blood ox above 90 and the only way to know is to have ox meter. Medicare and ins would not pay for mine. Good luck Re: Oxygen Tom, When I was first diagnosed in 1997 (open lung biopsy), I came home from the hospital with oxygen. After rehab in about a year, I gradually got off it. Then in 2001 I suffered at the hands of an inept doctor and had to go back on oxygen. Been carrying it around ever since. I was told that your diffusion number on your PFT will indicate the need for oxygen. The test results are hard for me to grasp. I have been online trying to decipher this latest one. I know that my lung volume is 46. At this point, I wish I had gone to medical school!!! Good breathing, Joyce>> Going through the posts it seems as if alot of people started oxygen > as soon as they were diagnosed. I get along without it for now. My > spirometry shows about 50% lung volume and my dr says I will need to > go on it when I get to about 20-30%. My saturation at rest is 96% and > goes down to around 92 with light activity. I don't want to go on it > but was wondering if other drs have different opinions or had the > disease progressed farther in other people before they caught it. Any > ideas?? Tom>

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Go to your search engine. Yahoo will work. Type in oxygen meter and press enter. This will give you web site to order meter. Mine cost $239.00 and came in 3 days. Used phone to order with credit card. Real simple. This is a real necessity for people with our lung conditions. The only way you have at home to monitor your lung functions. I just happen to have the bill from credit card that I just paid. Name of co is SECURENET MEDICAL AND IT HAD A CO AFTER THE NUMBER. Hope this will help you. Life is real precious to me and I want to stay with my family as long as possible. This worked for me. GOOD LUCK. (GREY)

Re: Oxygen

Tom,

When I was first diagnosed in 1997 (open lung biopsy), I came home from the hospital with oxygen. After rehab in about a year, I gradually got off it. Then in 2001 I suffered at the hands of an inept doctor and had to go back on oxygen. Been carrying it around ever since.

I was told that your diffusion number on your PFT will indicate the need for oxygen. The test results are hard for me to grasp. I have been online trying to decipher this latest one. I know that my lung volume is 46.

At this point, I wish I had gone to medical school!!!

Good breathing,

Joyce>> Going through the posts it seems as if alot of people started oxygen > as soon as they were diagnosed. I get along without it for now. My > spirometry shows about 50% lung volume and my dr says I will need to > go on it when I get to about 20-30%. My saturation at rest is 96% and > goes down to around 92 with light activity. I don't want to go on it > but was wondering if other drs have different opinions or had the > disease progressed farther in other people before they caught it. Any > ideas?? Tom>

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Grey, thanks for answering my question as to where to get a ox meter. I really appreciate the effort you made to give me this information. Barbjose singletary wrote: Go to your search engine. Yahoo will work. Type in oxygen meter and press enter. This will give you web site to order meter. Mine cost $239.00 and came in 3 days. Used phone to order with credit card. Real simple. This is a real necessity for people with our lung conditions. The only way you have at home to monitor your lung functions. I just happen to have the bill from credit card that I just paid. Name of co is SECURENET MEDICAL AND IT HAD A CO AFTER THE

NUMBER. Hope this will help you. Life is real precious to me and I want to stay with my family as long as possible. This worked for me. GOOD LUCK. (GREY) Re: Oxygen Tom, When I

was first diagnosed in 1997 (open lung biopsy), I came home from the hospital with oxygen. After rehab in about a year, I gradually got off it. Then in 2001 I suffered at the hands of an inept doctor and had to go back on oxygen. Been carrying it around ever since. I was told that your diffusion number on your PFT will indicate the need for oxygen. The test results are hard for me to grasp. I have been online trying to decipher this latest one. I know that my lung volume is 46. At this point, I wish I had gone to medical school!!! Good breathing, Joyce>> Going through the posts it seems as if alot of people started oxygen > as soon as they were diagnosed. I get along without it for now. My > spirometry shows about 50% lung volume and my dr says I will need to > go on it when I get to about 20-30%. My saturation at rest is 96% and > goes down to around 92 with light activity. I don't want to go on it > but was wondering if other drs have different opinions or had the > disease progressed farther in other people before they caught it. Any > ideas?? Tom> Brings words and photos together (easily) withPhotoMail - it's free and works with Yahoo! Mail.

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I read these posts every day and the tears flow like water. I stay strong for my family. They need strenght. Your families do too. Stay strong for them and GOD BLESS----

Re: Oxygen

Tom,

When I was first diagnosed in 1997 (open lung biopsy), I came home from the hospital with oxygen. After rehab in about a year, I gradually got off it. Then in 2001 I suffered at the hands of an inept doctor and had to go back on oxygen. Been carrying it around ever since.

I was told that your diffusion number on your PFT will indicate the need for oxygen. The test results are hard for me to grasp. I have been online trying to decipher this latest one. I know that my lung volume is 46.

At this point, I wish I had gone to medical school!!!

Good breathing,

Joyce>> Going through the posts it seems as if alot of people started oxygen > as soon as they were diagnosed. I get along without it for now. My > spirometry shows about 50% lung volume and my dr says I will need to > go on it when I get to about 20-30%. My saturation at rest is 96% and > goes down to around 92 with light activity. I don't want to go on it > but was wondering if other drs have different opinions or had the > disease progressed farther in other people before they caught it. Any > ideas?? Tom>

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Grey,

May God in his mercy bless you this day. What a sweet post. All I can say is me too!

Hugs to you,

Joyce

> >> > Going through the posts it seems as if alot of people started oxygen > > as soon as they were diagnosed. I get along without it for now. My > > spirometry shows about 50% lung volume and my dr says I will need to > > go on it when I get to about 20-30%. My saturation at rest is 96% and > > goes down to around 92 with light activity. I don't want to go on it > > but was wondering if other drs have different opinions or had the > > disease progressed farther in other people before they caught it. Any > > ideas?? Tom> >> > > > > --------------------------------------------------------------------------> Brings words and photos together (easily) with> PhotoMail - it's free and works with Yahoo! Mail. > > > > > ------------------------------------------------------------------------------> Yahoo! Mail> Bring photos to life! New PhotoMail makes sharing a breeze. > >

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Grey, Probably not a good plan to go out without your oxygen. I feel the same way that you do when I don't wear it. Like I'm going to pass out. Lightheaded. Almost a surreal feeling. I can sit still with it off (I'm doing that right now!), but the minute I walk, I need it. Hope this helps. Leannesingletary1934 wrote: Hello Group, I would like to ask you something. What happens to youwhen you turn off the ox for awhile. All this is kind of new for me.My wife drove off with the ox bottle and I decided to go to town fora biscuit. I was hanging out talking to people and started feelingstrange. It felt to me like

I was about to pass out. Got back homeas quick as I could. How does it make you feel when you turn off theox for awhile? I would like to know. Grey

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Grey,

It makes you feel...started feeling> strange. It felt to me like I was about to pass out. Exactly...what were you thinking?

Joyce

>> Hello Group, I would like to ask you something. What happens to you> when you turn off the ox for awhile. All this is kind of new for me.> My wife drove off with the ox bottle and I decided to go to town for> a biscuit. I was hanging out talking to people and started feeling> strange. It felt to me like I was about to pass out. Got back home> as quick as I could. How does it make you feel when you turn off the> ox for awhile? I would like to know. Grey>

[Guest guest]

Grey: I get extremely dizzy, especially if I am trying to walk around in a store or something. Learned I can't do that. Have to definitely keep the oxygen on when I am out and about. Barbjanne5303 wrote: Grey, It makes you feel...started feeling> strange. It felt to me like I was about to pass out. Exactly...what were you thinking? Joyce >> Hello Group, I would like to ask you something. What happens to you> when you turn off the ox for awhile. All this is kind of new for me.> My wife drove off with the ox bottle and I decided to go to town for> a biscuit. I was hanging out talking to people and started feeling> strange. It felt to me like I was about to pass out. Got back home> as quick as I could. How does it make you feel when you turn off the> ox for awhile? I would like to know. Grey>

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Barb, Sorry you had to go to the hosp. What did they tell you happened. Sounds like a bad trip. Good luck--Grey

Re: Re: oxygen

Grey: I get extremely dizzy, especially if I am trying to walk around in a store or something. Learned I can't do that. Have to definitely keep the oxygen on when I am out and about.

Barbjanne5303 wrote:

Grey,

It makes you feel...started feeling> strange. It felt to me like I was about to pass out. Exactly...what were you thinking?

Joyce

>> Hello Group, I would like to ask you something. What happens to you> when you turn off the ox for awhile. All this is kind of new for me.> My wife drove off with the ox bottle and I decided to go to town for> a biscuit. I was hanging out talking to people and started feeling> strange. It felt to me like I was about to pass out. Got back home> as quick as I could. How does it make you feel when you turn off the> ox for awhile? I would like to know. Grey>

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Hey, Grey: After I got out of that room and stood leaning on a desk in the hallway, they would no longer run tests to find out what was wrong with me...they treated me as if I was just trying to be hard to get along with. I called the President of the hospitals office today and basically they thought it was no big deal. Barbjose singletary wrote: Barb, Sorry you had to go to the hosp. What did they tell you happened. Sounds like a bad trip. Good luck--Grey Re: Re: oxygen Grey: I get extremely dizzy, especially if I am trying to walk around in a store or something. Learned I can't do that. Have to definitely keep the oxygen on when I am out and about. Barbjanne5303 wrote: Grey, It makes you feel...started feeling> strange. It felt to me like I was about to pass out. Exactly...what were you thinking? Joyce >> Hello Group, I would like to ask you something. What happens to you> when you turn off the ox for awhile. All this is kind of new for me.> My wife drove off with

the ox bottle and I decided to go to town for> a biscuit. I was hanging out talking to people and started feeling> strange. It felt to me like I was about to pass out. Got back home> as quick as I could. How does it make you feel when you turn off the> ox for awhile? I would like to know. Grey> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

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Hi everyone Just a note for the ones who'd drs. have said not get dependant on o2. I just spoke to the National Heart and Lung Institute. You can not get "dependant" on o2, your body already is just as a point of LIFE. So if your dr will not put you on o2 bcause of dependence, I'd check with another dr. It is a glorious day I think I'll walk to the mail boxes, Ginger, Barb and the rest are ahead of me on walking, gotta to catch up. God bless each and everyone of you. ipf 7/05

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Thank you . Hug a puppy for me please.

LynnA

>

> Hi everyone

> Just a note for the ones who'd drs. have said not get dependant

on o2. I just spoke to the National Heart and Lung Institute. You

can not get " dependant " on o2, your body already is just as a point

of LIFE. So if your dr will not put you on o2 bcause of dependence,

I'd check with another dr. It is a glorious day I think I'll walk to

the mail boxes, Ginger, Barb and the rest are ahead of me on

walking, gotta to catch up.

> God bless each and everyone of you.

>

> ipf 7/05

>

>

> ---------------------------------

> New Yahoo! Messenger with Voice. Call regular phones from your PC

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>