oxygen

[Guest guest]

Hi Tom My understanding of when we go on oxygen is when our oxygen saturation drops. My lung volume is 50% and I've been on oxygen since diagnosis. (3 years) Started at 2 liters just at night, then 2 litres all the time. I was on 4 litres for the longest time and now just went up to 5/6 liters. My saturation drops below 88 without it. Do you get short of breath? Leannetopamo wrote: 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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[Guest guest]

Tom - I think that's because many people (myself included) think the shortness of breath is because of age or not exercising enough. I know that I really knew something was wrong when I couldn't walk to the mailbox without stopping to catch my breath. This was something I did all the time, so I shouldn't have had any problems. When I went to the doctor, I expected him to tell me that I was just out of shape. I was shocked when I saw my blood gas...I knew something was wrong with me, but I didn't know what it was...I've been checked for diabetes....I never thought it was because my oxygen level was so low.....so, I think the answer to your question is that by the time we get to the doctor, our level of oxygen is low...sorry for talking so much tonight!! At least when I type, I don't breath faster!!

--Diane Quinlan dianequinlan@...

-------------- Original message -------------- Going through the posts it seems as if alot of people started oxygen as soon as they were diagnosed.

[Guest guest]

Leanne, thanks for the response. I get short of breath with some

activity. For example I can climb several flights of stairs but I

used to take them two at a time and that would make me short of

breath. I can walk around the store indefinitely but a brisk walk

only about a half hour. Tom

> 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

>

>

>

>

>

>

[Guest guest]

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>

[Guest guest]

Hi Tom, I was diagnosed Sept 28th, 2004 and started on O2 June 2005. My fibrosis got really active so my Dr ( Bless her little heart) started me on prednisone to kick the fibrosis and hopefully stop the progression. I started oxygen three months later, 2L, The prednisone didn't work. I am sure you've read my woe's with that fight.. Any how you hang in there. You'll probable know when you need O2. You keep a good attitude that helps more than anything. I might add be careful about your environment, Its so important. God Bless and Keep you in his hand. Peggy

on 3/17/06 9:18 PM, topamo at tomandcathy99@... wrote:

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

[Guest guest]

Leanne, I replied to you yesterday but I don't see that it posted so

if you get it twice I apologize. I do get short of breath with low

to moderate excersize. I can climb several flights of stairs but I

can't take one flight two at a time like I used to. I can walk

around the store shopping indefinitely but a brisk walk only lasts

about 10 minutes. Also raking or shoveling - short of breath

immediately!! Lifting heavy objects or bending over at the waist

also make me short of breath, I'm not sure why but that was one of

the things that sent me to the doctor- getting short of breath

toweling off after a shower.

> 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

>

>

>

>

>

>

[Guest guest]

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>

[Guest guest]

Hi Tom, I know I posted a whole long paragraph yesterday and it never showed up. Anyway, it sounds as if your oxygen may be dropping below 88 if you get short of breath. I would be curious to see what your saturation is after your 10 minute walk. Or after you get to the top of the stairs. Do you have a pulse oximeter? Nonin makes one and I was lucky enough to have someone give one to me. They are kinda expensive. $175-$250. Someone said that sometimes you can get them on ebay. Even tho oxygen is a pain in the you know what it frees you up to be much more active. Leannetopamo wrote: Leanne, I replied to you yesterday but I don't see that it posted so if you get it

twice I apologize. I do get short of breath with low to moderate excersize. I can climb several flights of stairs but I can't take one flight two at a time like I used to. I can walk around the store shopping indefinitely but a brisk walk only lasts about 10 minutes. Also raking or shoveling - short of breath immediately!! Lifting heavy objects or bending over at the waist also make me short of breath, I'm not sure why but that was one of the things that sent me to the doctor- getting short of breath toweling off after a shower. > 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> > > > > >

[Guest guest]

Hello Group; I am writing this because I am scared. When I did the

6min walk in Oct of 05 my blood ox was down just enough to get ox rx.

Took a bike test to get to rehab and the numbers were good (so they

told me). Did 6min for rehab this week and the number dropped to 85

in 3 min with 2L of ox. Does your blood ox numbers change from day to

day. I felt pretty bad today when I took the ox off for awhile to see

what the ox meter was saying. It told me I am losing ground fast.

Talk to the group and share your stories. They tell me my numbers

will get better with rehab. Grey

[Guest guest]

Grey,

I wasn't on 2L long. But, I stabilized at intervals between that and 5, where I am now. I actually improved enough in rehab to go off oxygen. I didn't use it for about 18 months. Then I got infection and coming out of the hospital, I was back on for good.

I am scared, too. I live in denial, then it will hit me like a slap in the face. Experiences like your current one is a slap!

Living with this disease is so difficult. That is why we need each other. No one else GETS IT!!!

Take care of you, I have you in my prayers.

Joyce>> Hello Group; I am writing this because I am scared. When I did the> 6min walk in Oct of 05 my blood ox was down just enough to get ox rx.> Took a bike test to get to rehab and the numbers were good (so they> told me). Did 6min for rehab this week and the number dropped to 85> in 3 min with 2L of ox. Does your blood ox numbers change from day to> day. I felt pretty bad today when I took the ox off for awhile to see> what the ox meter was saying. It told me I am losing ground fast. > Talk to the group and share your stories. They tell me my numbers> will get better with rehab. Grey>