Uh oh

[Guest guest]

Greetings air friends - hope everyone is relatively well tonight. I

have received my brand new $65 oximeter that was suggested by the

group, and now I'm a little worried about what I'm seeing. The numbers

have been in the low 90s when I'm doing nothing, and when I play with

my dogs a little, or go upstairs, they get into the 80s (84 - 87 -

88). I am not currently on oxygen - didn't think I needed to be. What

say you? I am not anxious to be saddled with all that goes with

oxygen, but on the other hand, I don't want to be stupid about it

either.

[Guest guest]

Hi Barbara,

There'll be be sixty Questions from the Board no doubt ( & probably heaps more from Dr. Bruce!) but I'm wondering how long it's been since your last Check-over with your Pulmo?

I'd be keeping a Daily Diary of what you're noticing... include how long it takes for you Sats to rise again when you rest after they've been low.

I'm not on O2 yet (except for long-haul flights) but I am noticing that my Sats are falling quicker into the low 80's & even down into the mid 70's) for certain types of exercise. I talked to my Respiratory Rehab Nurse about it last week & she suggested the Dairy & to watch the recovery time. She said that element was crucial in making the call as to when it would be time for me to start using O2 for exercise. She said it should be no longer than a minute to see marked upward movement back to 90.

I'll be squaling for the stuff as soon as I see DANGER... I value my Brain Cells too much to ignore the inevitable!

Good Luck..... (I've used my Oximeter since last September... invaluable for getting me confident & exercising again!)

in Oz

>> Greetings air friends - hope everyone is relatively well tonight. I > have received my brand new $65 oximeter that was suggested by the > group, and now I'm a little worried about what I'm seeing. The numbers > have been in the low 90s when I'm doing nothing, and when I play with > my dogs a little, or go upstairs, they get into the 80s (84 - 87 - > 88). I am not currently on oxygen - didn't think I needed to be. What > say you? I am not anxious to be saddled with all that goes with > oxygen, but on the other hand, I don't want to be stupid about it > either.>

[Guest guest]

Barbara

I say thats the best $65 you ever spent. It may save your heart or

kidneys and make you live longer and feel better. You need to find a

good pulmonologist quickly and get a complete examination and

prescription for oxygen.

Curiosity as to whether you wear glasses? I ask because of the reference

" saddled with all that goes with oxygen. " No its not the same, but I

know how so many react to their first glasses. And they are just to see.

Now, oxygen protects your organs in addition to allowing you to do

things you couldn't otherwise. I've been on oxygen over a year now and

its just normal for me now. Yes, it may be a bit inconvenient in some

ways, but so are the glasses I've worn for 54 years. So are all the

other prescriptions I take. I just know that I could not enjoy life as I

do without oxygen and that I'm protecting my quality of life with it far

more than it takes away. Yes, finding the right forms of oxygen for each

of us is a challenge, but I'm set up and have adapted.

Do you exercise in any way? You'd probably drop even lower then and

exercise is very important to all of us. The other key check is what is

happening during your sleep. I quite suspect that much of your sleep

time is below 90% as we breathe less when asleep. You need your

pulmonologist to request an overnight oximeter recording device be

delivered to your home for use a couple of nights. The first night will

be without oxygen and the second with a small level of it.

>

> Greetings air friends - hope everyone is relatively well tonight. I

> have received my brand new $65 oximeter that was suggested by the

> group, and now I'm a little worried about what I'm seeing. The numbers

> have been in the low 90s when I'm doing nothing, and when I play with

> my dogs a little, or go upstairs, they get into the 80s (84 - 87 -

> 88). I am not currently on oxygen - didn't think I needed to be. What

> say you? I am not anxious to be saddled with all that goes with

> oxygen, but on the other hand, I don't want to be stupid about it

> either.

>

[Guest guest]

GINA

Low 80's? Mid 70's? And just what is it doing when you're asleep? And

how long since you've seen your pulmo? I'd say get there NOW. I suspect

your rehab nurse has far more COPD patients than PF'ers. I realize that

in Oz some standards regarding treatment and oxygen use may be

different, not to be said better or worse.

However, if you were dropping to those levels in rehab here, I can't

imagine them not requiring you to use oxygen right then for rehab or

perhaps you are? Also, while the return to 90 is important, the standard

here even with insurers and medicare is that if you drop below 88 on a

six minute walk you require oxygen.

It's not your brain cells I'm as worried about as PH and heart and

kidneys and other organs. (Resisting any comment about too late for your

brain...lol). Please take care of yourself.

To and others: What is it that you do today that being on

supplemental oxygen would prevent you from doing? Think about that one,

please. If you do, I believe you'll find virtually nothing.

> >

> > Greetings air friends - hope everyone is relatively well tonight. I

> > have received my brand new $65 oximeter that was suggested by the

> > group, and now I'm a little worried about what I'm seeing. The

numbers

> > have been in the low 90s when I'm doing nothing, and when I play

with

> > my dogs a little, or go upstairs, they get into the 80s (84 - 87 -

> > 88). I am not currently on oxygen - didn't think I needed to be.

What

> > say you? I am not anxious to be saddled with all that goes with

> > oxygen, but on the other hand, I don't want to be stupid about it

> > either.

> >

>

[Guest guest]

Bruce and : Thanks for responding; I appreciate your input. See - here's my thing. I really don't believe that I'm sick. I accept that I'll be sick SOMEDAY, but not yet. I feel perfectly fine, except for the coughing, and the tiredness, and the SOB and the racing heart. Those things are annoying, but then I get over them and all seems well. I said to my pulmodude recently: "I'm not really very sick, am I?" And he replied "Well....., if someone has less than a 50% chance of surviving five years, I'd say they were pretty sick." I didn't take that as a wake-up call; I just thought it was funny. I'm not sure if I'm in denial, or just at peace. I sure don't want to be a hypochondriac. Now, the oximeter readings are low. I, of course, think that maybe the

meter isn't properly calibrated. Or maybe my Reynaud's is interfering with the reading (the pulmo said it might). Also, the pulmo (who is very well respected in this community) said that (I hope I have this right) a short-term exercise-induced drop in stats has not been shown to be detrimental. I would guess that I'm not the only person who has ever experienced this waffling, but I hesitate to share it, lest you - my air friends - write me off as a pain in the neck. I am driving myself crazy, and I don't know how to stop. So there you have it. Thanks for "listening". Barbara McD IPF 9/08 Beautiful Western NC Bruce Moreland wrote: BarbaraI say thats the best $65 you ever spent. It may save your heart orkidneys and make you live longer and feel better. You need to find agood pulmonologist quickly and get a complete examination andprescription for oxygen.Curiosity as to whether you wear glasses? I ask because of the reference"saddled with all that goes with oxygen." No its not the same, but Iknow how so many react to their first glasses. And they are just to see.Now, oxygen protects your organs in addition to allowing you to dothings you couldn't otherwise. I've been on oxygen over a year now andits just

normal for me now. Yes, it may be a bit inconvenient in someways, but so are the glasses I've worn for 54 years. So are all theother prescriptions I take. I just know that I could not enjoy life as Ido without oxygen and that I'm protecting my quality of life with it farmore than it takes away. Yes, finding the right forms of oxygen for eachof us is a challenge, but I'm set up and have adapted.Do you exercise in any way? You'd probably drop even lower then andexercise is very important to all of us. The other key check is what ishappening during your sleep. I quite suspect that much of your sleeptime is below 90% as we breathe less when asleep. You need yourpulmonologist to request an overnight oximeter recording device bedelivered to your home for use a couple of nights. The first night willbe without oxygen and the second with a small level of it.>> Greetings air friends - hope everyone is relatively well tonight. I> have received my brand new $65 oximeter that was suggested by the> group, and now I'm a little worried about what I'm seeing. The numbers> have been in the low 90s when I'm doing nothing, and when I play with> my dogs a little, or go upstairs, they get into the 80s (84 - 87 -> 88). I am not currently on oxygen - didn't think I needed to be. What> say you? I am not anxious to be saddled with all that goes with> oxygen, but on the other hand, I don't want to be stupid about it> either.>Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

[Guest guest]

Barb,

I totally understand where you're coming from with this. Coming to grips with the reality of this lung disease is a process, it does not happen all at once.

I am concerned however about the fact that your sats drop with relatively minor activity. It's a sign that you have very little reserve. pointed out that the recovery factor is important. If you recover relatively quickly (within a couple of minutes) you are not likely doing yourself great harm.

HOWEVER and this is a big caveat if your doing something, like grocery shopping or going for a walk or vacuuming or whatever your sats likely drop below 90 and stay there for the duration of that activity. That's a problem and it's damaging every other organ in your body. I know that you feel well "except for the coughing, and the tiredness, and the SOB and the racing heart." But Barbara all those things are signs of your lung disease. Making your heart work harder to compensate for your lungs is one of the things that causes congestive heart failure. CHF is what hospitalized my two years ago and nearly killed me. Chronically low sats also contribute to the development of pulmonary hypertension and cor pulmonale (right sided heart failure).

Honestly, I would get another opinion from a different pulmonologist. I'd request a 24 hour oximeter so that you truly know what you are dealing with in regards to your O2 levels.

Is the O2 a pain in the butt? Absolutely. I despise it. But it keeps me here and alive and able to do the things I want. It is an adjsutment but it's one we've all made and you can too if that's what you need to do.

Look after yourself!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 UCTD 06/08

"Take chances, make mistakes and get messy!"

Miss Frizzle

To: Breathe-Support Sent: Saturday, November 29, 2008 10:40:35 AMSubject: Re: Re: Uh oh

Bruce and :

Thanks for responding; I appreciate your input.

See - here's my thing. I really don't believe that I'm sick. I accept that I'll be sick SOMEDAY, but not yet. I feel perfectly fine, except for the coughing, and the tiredness, and the SOB and the racing heart. Those things are annoying, but then I get over them and all seems well.

I said to my pulmodude recently: "I'm not really very sick, am I?" And he replied "Well....., if someone has less than a 50% chance of surviving five years, I'd say they were pretty sick." I didn't take that as a wake-up call; I just thought it was funny. I'm not sure if I'm in denial, or just at peace. I sure don't want to be a hypochondriac.

Now, the oximeter readings are low. I, of course, think that maybe the meter isn't properly calibrated. Or maybe my Reynaud's is interfering with the reading (the pulmo said it might). Also, the pulmo (who is very well respected in this community) said that (I hope I have this right) a short-term exercise-induced drop in stats has not been shown to be detrimental.

I would guess that I'm not the only person who has ever experienced this waffling, but I hesitate to share it, lest you - my air friends - write me off as a pain in the neck. I am driving myself crazy, and I don't know how to stop.

So there you have it. Thanks for "listening".

Barbara McD

IPF 9/08

Beautiful Western NC

Bruce Moreland <brucemoreland@ gmail.com> wrote:

BarbaraI say thats the best $65 you ever spent. It may save your heart orkidneys and make you live longer and feel better. You need to find agood pulmonologist quickly and get a complete examination andprescription for oxygen.Curiosity as to whether you wear glasses? I ask because of the reference"saddled with all that goes with oxygen." No its not the same, but Iknow how so many react to their first glasses. And they are just to see.Now, oxygen protects your organs in addition to allowing you to dothings you couldn't otherwise. I've been on oxygen over a year now andits just normal for me now. Yes, it may be a bit inconvenient in someways, but so are the glasses I've worn for 54 years. So are all theother prescriptions I take. I just know that I could not enjoy life as Ido without oxygen and that I'm protecting my quality of life with it farmore than it takes away. Yes, finding the

right forms of oxygen for eachof us is a challenge, but I'm set up and have adapted.Do you exercise in any way? You'd probably drop even lower then andexercise is very important to all of us. The other key check is what ishappening during your sleep. I quite suspect that much of your sleeptime is below 90% as we breathe less when asleep. You need yourpulmonologist to request an overnight oximeter recording device bedelivered to your home for use a couple of nights. The first night willbe without oxygen and the second with a small level of it.>> Greetings air friends - hope everyone is relatively well tonight. I> have received my brand new $65 oximeter that was suggested by the>

group, and now I'm a little worried about what I'm seeing. The numbers> have been in the low 90s when I'm doing nothing, and when I play with> my dogs a little, or go upstairs, they get into the 80s (84 - 87 -> 88). I am not currently on oxygen - didn't think I needed to be. What> say you? I am not anxious to be saddled with all that goes with> oxygen, but on the other hand, I don't want to be stupid about it> either.>

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

[Guest guest]

Barbara

Perfectly fine, except the coughing, tiredness, SOB, and racing heart.

I'm perfectly fine except for whats not fine too. The point is are you

harming yourself and putting the future being the best it can be at

risk? Now, still, I can look and seem amazingly healthy even with my

oxygen. I don't feel most of the time like someone with a bad prognosis.

As to respected pulmonologist, I'd ask how experienced with PF. Many

highly respected pulmonologists have seen very few PF patients in their

practices.

Reynauds can affect the oximeter readings and sometimes does cause the

need for reading other than from the fingers. Because yours is low even

at rest, this could be an issue.

You talk short term exercise induced, but I'd probably be more concerned

about your sleep Sats right now as that isn't short term. The first time

mine were checked I was below 90% over 25% of my sleep time. This is for

someone who can lay calmly in bed and reach 96% and higher with no

oxygen. If your saturation from your oximeter is accurate, I don't think

yours fits exercise induced, but rather activity induced, by normal

daily activities.

While I understand not wanting to be on oxygen or any medication if not

needed, I'm afraid I don't fully understand the resistance to being on

it if needed. Is it something specific or is it that it signifies having

to acknowledge a disease?

I know some of you read of oxygen issues here but please recognize very

few of those are when first starting oxygen. We're talking people on

very high liter flows when it won't be a choice anyway. Please don't

mistake those issues for what you might encounter at 2 lpm for exertion

or sleep.

And we'll never write you off as a pain in the neck. Our only desire is

wanting to let you vent and talk and trying to respond in the most

supportive way we can.

> >

> > Greetings air friends - hope everyone is relatively well tonight. I

> > have received my brand new $65 oximeter that was suggested by the

> > group, and now I'm a little worried about what I'm seeing. The

numbers

> > have been in the low 90s when I'm doing nothing, and when I play

with

> > my dogs a little, or go upstairs, they get into the 80s (84 - 87 -

> > 88). I am not currently on oxygen - didn't think I needed to be.

What

> > say you? I am not anxious to be saddled with all that goes with

> > oxygen, but on the other hand, I don't want to be stupid about it

> > either.

> >

>

>

>

>

>

>

> Barbara McD

> IPF, Sept 08

> Beautiful Western NC

>

>

>

> Let us not become weary in doing good, for at the proper time we will

reap a harvest if we do not give up. Galatians 6:9

>

[Guest guest]

Barbara ... let me join in here and ditto what Bruce writes. If you KNOW you are dropping below 90 then you already KNOW you are needing supplemental o2. If you KNOW it then it's not wise to ignore it.

Again, as good brother Bruce writes so often...(these are my words however) "prevention is worth a pound of cure".

See your pulmodude (oh Jon, I love that word and see others are using it too. LOL)

and request a nighttime o2 check as well. I had no idea my o2 was dropping way to low at night until I had one. Easy to do...

I absolutely FOUGHT using o2 when I first rec'd it! Hated lugging that damn cylinder on my shoulder (arthritis) and hated people staring at me and so on and so on. But now I'm grateful I have it to use. I've adjusted to it and it does make life more comfortable.

I've tried various "backpacks" and "carriers" to tote the cylinder and settled on one that suits me best so it's easier to pick up and go. I only need o2 w/exertion so if I go shopping I KNOW I will need o2 and I'm glad to have it when I'm out and about.

Good luck and keep on keepin' on.

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

Re: Uh oh

BarbaraI say thats the best $65 you ever spent. It may save your heart orkidneys and make you live longer and feel better. You need to find agood pulmonologist quickly and get a complete examination andprescription for oxygen.Curiosity as to whether you wear glasses? I ask because of the reference"saddled with all that goes with oxygen." No its not the same, but Iknow how so many react to their first glasses. And they are just to see.Now, oxygen protects your organs in addition to allowing you to dothings you couldn't otherwise. I've been on oxygen over a year now andits just normal for me now. Yes, it may be a bit inconvenient in someways, but so are the glasses I've worn for 54 years. So are all theother prescriptions I take. I just know that I could not enjoy life as Ido without oxygen and that I'm protecting my quality of life with it farmore than it takes away. Yes, finding the right forms of oxygen for eachof us is a challenge, but I'm set up and have adapted.Do you exercise in any way? You'd probably drop even lower then andexercise is very important to all of us. The other key check is what ishappening during your sleep. I quite suspect that much of your sleeptime is below 90% as we breathe less when asleep. You need yourpulmonologist to request an overnight oximeter recording device bedelivered to your home for use a couple of nights. The first night willbe without oxygen and the second with a small level of it.>> Greetings air friends - hope everyone is relatively well tonight. I> have received my brand new $65 oximeter that was suggested by the> group, and now I'm a little worried about what I'm seeing. The numbers> have been in the low 90s when I'm doing nothing, and when I play with> my dogs a little, or go upstairs, they get into the 80s (84 - 87 -> 88). I am not currently on oxygen - didn't think I needed to be. What> say you? I am not anxious to be saddled with all that goes with> oxygen, but on the other hand, I don't want to be stupid about it> either.>

[Guest guest]

Whoops, my silly little quote should be:

"An ounce of prevention is worth a pound of cure"...sorry.

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

Re: Uh oh

BarbaraI say thats the best $65 you ever spent. It may save your heart orkidneys and make you live longer and feel better. You need to find agood pulmonologist quickly and get a complete examination andprescription for oxygen.Curiosity as to whether you wear glasses? I ask because of the reference"saddled with all that goes with oxygen." No its not the same, but Iknow how so many react to their first glasses. And they are just to see.Now, oxygen protects your organs in addition to allowing you to dothings you couldn't otherwise. I've been on oxygen over a year now andits just normal for me now. Yes, it may be a bit inconvenient in someways, but so are the glasses I've worn for 54 years. So are all theother prescriptions I take. I just know that I could not enjoy life as Ido without oxygen and that I'm protecting my quality of life with it farmore than it takes away. Yes, finding the right forms of oxygen for eachof us is a challenge, but I'm set up and have adapted.Do you exercise in any way? You'd probably drop even lower then andexercise is very important to all of us. The other key check is what ishappening during your sleep. I quite suspect that much of your sleeptime is below 90% as we breathe less when asleep. You need yourpulmonologist to request an overnight oximeter recording device bedelivered to your home for use a couple of nights. The first night willbe without oxygen and the second with a small level of it.>> Greetings air friends - hope everyone is relatively well tonight. I> have received my brand new $65 oximeter that was suggested by the> group, and now I'm a little worried about what I'm seeing. The numbers> have been in the low 90s when I'm doing nothing, and when I play with> my dogs a little, or go upstairs, they get into the 80s (84 - 87 -> 88). I am not currently on oxygen - didn't think I needed to be. What> say you? I am not anxious to be saddled with all that goes with> oxygen, but on the other hand, I don't want to be stupid about it> either.>

[Guest guest]

Barbara ... only because I stayed in denial for sooooooooo long do I think I spot the same in you. Go back and re-read your own post... for every symptom or information you are finding a reason/excuse.

You are NEVER a pain. NEVER.

However, we can stay in denial for a long time and THAT can create "pain" for ourselves.

>>>>>>>I really don't believe that I'm sick>>>>>

I accept that I'll be sick SOMEDAY, but not yet. >>>>>I get over them and all seems well>>>>

"I'm not really very sick, am I?" >>>>>

I didn't take that as a wake-up call; I just thought it was funny. >>>>

Now, the oximeter readings are low. I, of course, think that maybe the meter isn't properly calibrated. Or maybe my Reynaud's is interfering with the reading (the pulmo said it might).

a short-term exercise-induced drop in stats has not been shown to be detrimental.

Maybe reading back you can see what I see...do you think it could be denial???

Accepting the things you cannot change will help you to stop 'obsessing'.

Now, I'm saying these things in love to you. I'm the old-Mama-Sher around here and I "mother" everyone!

We'll always listen! Keep writing and you'll find yourself. What I say to you is not necessarily a fact, but it could be for your consideration.

Love,

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

Re: Re: Uh oh

Bruce and :

Thanks for responding; I appreciate your input.

See - here's my thing. I really don't believe that I'm sick. I accept that I'll be sick SOMEDAY, but not yet. I feel perfectly fine, except for the coughing, and the tiredness, and the SOB and the racing heart. Those things are annoying, but then I get over them and all seems well.

I said to my pulmodude recently: "I'm not really very sick, am I?" And he replied "Well....., if someone has less than a 50% chance of surviving five years, I'd say they were pretty sick." I didn't take that as a wake-up call; I just thought it was funny. I'm not sure if I'm in denial, or just at peace. I sure don't want to be a hypochondriac.

Now, the oximeter readings are low. I, of course, think that maybe the meter isn't properly calibrated. Or maybe my Reynaud's is interfering with the reading (the pulmo said it might). Also, the pulmo (who is very well respected in this community) said that (I hope I have this right) a short-term exercise-induced drop in stats has not been shown to be detrimental.

I would guess that I'm not the only person who has ever experienced this waffling, but I hesitate to share it, lest you - my air friends - write me off as a pain in the neck. I am driving myself crazy, and I don't know how to stop.

So there you have it. Thanks for "listening".

Barbara McD

IPF 9/08

Beautiful Western NC

Bruce Moreland <brucemoreland (AT) gmail (DOT) com> wrote:

BarbaraI say thats the best $65 you ever spent. It may save your heart orkidneys and make you live longer and feel better. You need to find agood pulmonologist quickly and get a complete examination andprescription for oxygen.Curiosity as to whether you wear glasses? I ask because of the reference"saddled with all that goes with oxygen." No its not the same, but Iknow how so many react to their first glasses. And they are just to see.Now, oxygen protects your organs in addition to allowing you to dothings you couldn't otherwise. I've been on oxygen over a year now andits just normal for me now. Yes, it may be a bit inconvenient in someways, but so are the glasses I've worn for 54 years. So are all theother prescriptions I take. I just know that I could not enjoy life as Ido without oxygen and that I'm protecting my quality of life with it farmore than it takes away. Yes, finding the right forms of oxygen for eachof us is a challenge, but I'm set up and have adapted.Do you exercise in any way? You'd probably drop even lower then andexercise is very important to all of us. The other key check is what ishappening during your sleep. I quite suspect that much of your sleeptime is below 90% as we breathe less when asleep. You need yourpulmonologist to request an overnight oximeter recording device bedelivered to your home for use a couple of nights. The first night willbe without oxygen and the second with a small level of it.>> Greetings air friends - hope everyone is relatively well tonight. I> have received my brand new $65 oximeter that was suggested by the> group, and now I'm a little worried about what I'm seeing. The numbers> have been in the low 90s when I'm doing nothing, and when I play with> my dogs a little, or go upstairs, they get into the 80s (84 - 87 -> 88). I am not currently on oxygen - didn't think I needed to be. What> say you? I am not anxious to be saddled with all that goes with> oxygen, but on the other hand, I don't want to be stupid about it> either.>

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

[Guest guest]

... Dairy???? huh?

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

Re: Uh oh

GINALow 80's? Mid 70's? And just what is it doing when you're asleep? Andhow long since you've seen your pulmo? I'd say get there NOW. I suspectyour rehab nurse has far more COPD patients than PF'ers. I realize thatin Oz some standards regarding treatment and oxygen use may bedifferent, not to be said better or worse.However, if you were dropping to those levels in rehab here, I can'timagine them not requiring you to use oxygen right then for rehab orperhaps you are? Also, while the return to 90 is important, the standardhere even with insurers and medicare is that if you drop below 88 on asix minute walk you require oxygen.It's not your brain cells I'm as worried about as PH and heart andkidneys and other organs. (Resisting any comment about too late for yourbrain...lol). Please take care of yourself.To and others: What is it that you do today that being onsupplemental oxygen would prevent you from doing? Think about that one,please. If you do, I believe you'll find virtually nothing.> >> > Greetings air friends - hope everyone is relatively well tonight. I> > have received my brand new $65 oximeter that was suggested by the> > group, and now I'm a little worried about what I'm seeing. Thenumbers> > have been in the low 90s when I'm doing nothing, and when I playwith> > my dogs a little, or go upstairs, they get into the 80s (84 - 87 -> > 88). I am not currently on oxygen - didn't think I needed to be.What> > say you? I am not anxious to be saddled with all that goes with> > oxygen, but on the other hand, I don't want to be stupid about it> > either.> >>

[Guest guest]

I dunno, Sher. How can you tell if you are in denial? I guess I am (maybe), but does that negate my rationalizations? I'm having a hard time with this. I think maybe I'm using the oximeter incorrectly, since the readings seem to be all over the place - if I get any reading at all. Just now, I took the dogs for a tiny walk down and up the driveway and--maybe because it's so cold and damp and I have Reynauld's--I got no reading at all! I will work thru this, just please hang in there with me! BSher Bauman wrote: Barbara ... only because I stayed in denial for sooooooooo long do I think I spot the same in you. Go back and re-read your own post... for every symptom or information you are finding a reason/excuse. You are NEVER a pain. NEVER. However, we can stay in denial for a long time and THAT can create "pain" for ourselves. >>>>>>>I really don't believe that I'm sick>>>>> I accept that I'll be sick SOMEDAY, but not yet. >>>>>I get over them and all seems well>>>> "I'm not really very sick, am I?" >>>>> I didn't take

that as a wake-up call; I just thought it was funny. >>>> Now, the oximeter readings are low. I, of course, think that maybe the meter isn't properly calibrated. Or maybe my Reynaud's is interfering with the reading (the pulmo said it might). a short-term exercise-induced drop in stats has not been shown to be detrimental. Maybe reading back you can see what I see...do you think it could be denial??? Accepting the things you cannot change will help you to stop 'obsessing'. Now, I'm saying these things in love to you. I'm the old-Mama-Sher around here and I "mother" everyone! We'll always listen! Keep writing and you'll find yourself. What I say to you is not necessarily a fact, but it could be for your

consideration. Love, MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Re: Uh oh Bruce and : Thanks for responding; I appreciate

your input. See - here's my thing. I really don't believe that I'm sick. I accept that I'll be sick SOMEDAY, but not yet. I feel perfectly fine, except for the coughing, and the tiredness, and the SOB and the racing heart. Those things are annoying, but then I get over them and all seems well. I said to my pulmodude recently: "I'm not really very sick, am I?" And he replied "Well....., if someone has less than a 50% chance of surviving five years, I'd say they were pretty sick." I didn't take that as a wake-up call; I just thought it was funny. I'm not sure if I'm in denial, or just at peace. I sure don't want to be a hypochondriac. Now, the oximeter readings are low. I, of course, think that maybe the meter isn't properly calibrated. Or maybe my Reynaud's is interfering with the

reading (the pulmo said it might). Also, the pulmo (who is very well respected in this community) said that (I hope I have this right) a short-term exercise-induced drop in stats has not been shown to be detrimental. I would guess that I'm not the only person who has ever experienced this waffling, but I hesitate to share it, lest you - my air friends - write me off as a pain in the neck. I am driving myself crazy, and I don't know how to stop. So there you have it. Thanks for "listening". Barbara McD IPF 9/08 Beautiful Western NC Bruce Moreland <brucemoreland (AT) gmail (DOT) com> wrote: BarbaraI say thats the best $65 you ever

spent. It may save your heart orkidneys and make you live longer and feel better. You need to find agood pulmonologist quickly and get a complete examination andprescription for oxygen.Curiosity as to whether you wear glasses? I ask because of the reference"saddled with all that goes with oxygen." No its not the same, but Iknow how so many react to their first glasses. And they are just to see.Now, oxygen protects your organs in addition to allowing you to dothings you couldn't otherwise. I've been on oxygen over a year now andits just normal for me now. Yes, it may be a bit inconvenient in someways, but so are the glasses I've worn for 54 years. So are all theother prescriptions I take. I just know that I could not enjoy life as Ido without oxygen and that I'm protecting my quality of life with it farmore than it takes away. Yes, finding the right forms of oxygen for eachof us is a challenge, but I'm set up and

have adapted.Do you exercise in any way? You'd probably drop even lower then andexercise is very important to all of us. The other key check is what ishappening during your sleep. I quite suspect that much of your sleeptime is below 90% as we breathe less when asleep. You need yourpulmonologist to request an overnight oximeter recording device bedelivered to your home for use a couple of nights. The first night willbe without oxygen and the second with a small level of it.>> Greetings air friends - hope everyone is relatively well tonight. I> have received my brand new $65 oximeter that was suggested by the> group, and now I'm a little worried about what I'm seeing. The numbers> have been in the low 90s when I'm doing nothing, and when I play with> my dogs

a little, or go upstairs, they get into the 80s (84 - 87 -> 88). I am not currently on oxygen - didn't think I needed to be. What> say you? I am not anxious to be saddled with all that goes with> oxygen, but on the other hand, I don't want to be stupid about it> either.> Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

[Guest guest]

I dunno, Sher. How can you tell if you are in denial? I guess I am (maybe), but does that negate my rationalizations? I'm having a hard time with this. I think maybe I'm using the oximeter incorrectly, since the readings seem to be all over the place - if I get any reading at all. Just now, I took the dogs for a tiny walk down and up the driveway and--maybe because it's so cold and damp and I have Reynauld's--I got no reading at all! I will work thru this, just please hang in there with me! BSher Bauman wrote: Barbara ... only because I stayed in denial for sooooooooo long do I think I spot the same in you. Go back and re-read your own post... for every symptom or information you are finding a reason/excuse. You are NEVER a pain. NEVER. However, we can stay in denial for a long time and THAT can create "pain" for ourselves. >>>>>>>I really don't believe that I'm sick>>>>> I accept that I'll be sick SOMEDAY, but not yet. >>>>>I get over them and all seems well>>>> "I'm not really very sick, am I?" >>>>> I didn't take

that as a wake-up call; I just thought it was funny. >>>> Now, the oximeter readings are low. I, of course, think that maybe the meter isn't properly calibrated. Or maybe my Reynaud's is interfering with the reading (the pulmo said it might). a short-term exercise-induced drop in stats has not been shown to be detrimental. Maybe reading back you can see what I see...do you think it could be denial??? Accepting the things you cannot change will help you to stop 'obsessing'. Now, I'm saying these things in love to you. I'm the old-Mama-Sher around here and I "mother" everyone! We'll always listen! Keep writing and you'll find yourself. What I say to you is not necessarily a fact, but it could be for your

consideration. Love, MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Re: Uh oh Bruce and : Thanks for responding; I appreciate

your input. See - here's my thing. I really don't believe that I'm sick. I accept that I'll be sick SOMEDAY, but not yet. I feel perfectly fine, except for the coughing, and the tiredness, and the SOB and the racing heart. Those things are annoying, but then I get over them and all seems well. I said to my pulmodude recently: "I'm not really very sick, am I?" And he replied "Well....., if someone has less than a 50% chance of surviving five years, I'd say they were pretty sick." I didn't take that as a wake-up call; I just thought it was funny. I'm not sure if I'm in denial, or just at peace. I sure don't want to be a hypochondriac. Now, the oximeter readings are low. I, of course, think that maybe the meter isn't properly calibrated. Or maybe my Reynaud's is interfering with the

reading (the pulmo said it might). Also, the pulmo (who is very well respected in this community) said that (I hope I have this right) a short-term exercise-induced drop in stats has not been shown to be detrimental. I would guess that I'm not the only person who has ever experienced this waffling, but I hesitate to share it, lest you - my air friends - write me off as a pain in the neck. I am driving myself crazy, and I don't know how to stop. So there you have it. Thanks for "listening". Barbara McD IPF 9/08 Beautiful Western NC Bruce Moreland <brucemoreland (AT) gmail (DOT) com> wrote: BarbaraI say thats the best $65 you ever

spent. It may save your heart orkidneys and make you live longer and feel better. You need to find agood pulmonologist quickly and get a complete examination andprescription for oxygen.Curiosity as to whether you wear glasses? I ask because of the reference"saddled with all that goes with oxygen." No its not the same, but Iknow how so many react to their first glasses. And they are just to see.Now, oxygen protects your organs in addition to allowing you to dothings you couldn't otherwise. I've been on oxygen over a year now andits just normal for me now. Yes, it may be a bit inconvenient in someways, but so are the glasses I've worn for 54 years. So are all theother prescriptions I take. I just know that I could not enjoy life as Ido without oxygen and that I'm protecting my quality of life with it farmore than it takes away. Yes, finding the right forms of oxygen for eachof us is a challenge, but I'm set up and

have adapted.Do you exercise in any way? You'd probably drop even lower then andexercise is very important to all of us. The other key check is what ishappening during your sleep. I quite suspect that much of your sleeptime is below 90% as we breathe less when asleep. You need yourpulmonologist to request an overnight oximeter recording device bedelivered to your home for use a couple of nights. The first night willbe without oxygen and the second with a small level of it.>> Greetings air friends - hope everyone is relatively well tonight. I> have received my brand new $65 oximeter that was suggested by the> group, and now I'm a little worried about what I'm seeing. The numbers> have been in the low 90s when I'm doing nothing, and when I play with> my dogs

a little, or go upstairs, they get into the 80s (84 - 87 -> 88). I am not currently on oxygen - didn't think I needed to be. What> say you? I am not anxious to be saddled with all that goes with> oxygen, but on the other hand, I don't want to be stupid about it> either.> Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

[Guest guest]

Barbara

With the cold and Raynaud's you might sometimes get no reading. Nail

polish can do it too although you can turn it upside down and get one.

Hard to use it incorrectly. Just can't be sure with your Raynaud's, not

knowing the extent or having seen a comparison read on another part of

your body. However, the fact it is reading less with exertion than when

still shows that its at least getting a comparative reading. It will

jump around a bit. I'm at 96 right now on the sofa with no oxygen. If I

walked twenty feet I'd be in the 80's. I require up to 5 lpm on the

treadmill, 3-4 when doing any activity, 2 when just walking to and from

the kitchen or bathroom or around the house.

As to your rationalizations, they are symptoms: coughing, tired, sob,

racing heart. Whether or not you need oxygen and I highly suspect you

do, those are definitely not symptoms to be ignored. Just because you

get use to them doesn't mean they are normal and consistent with nothing

being wrong.

I see you looking a bit for an all or nothing. Either I'm fine and

nothing wrong and no need for oxygen or if I'm sick and need oxygen I

should feel awful all the time. While some here got diagnosed after

serious events, most of us just thought that we were out of shape or

allergies or repeated colds or something. I hadn't even heard of PF. I

thought worst case COPD-I had heard of it. So, why not I've got a

disease, I have some symptoms but I'm still doing well overall and I

intend to continue doing so whether I need oxygen or not.

Between the all or nothing there is lots of great life to be lived. I

don't determine lots by quantity, because no one knows how many years. I

determine by quality. I'll repeat it a million times. I have PF,

specifically UIP. I'm on oxygen and always will be. My life is very

good. When I get back to NC next spring I'll prove it to you.

I very strongly suggest a trip to Duke. You can see the best there and

no so much more about your condition. In one day they can do more than

you can imagine and then a trip back to review it. I went to Chicago. So

worth it. I even considered a trip to Duke last spring.

I intend to get every mile, every hour my lungs have out of them. That

means protecting my heart and the rest of my body the best I can. Now,

might something else happen? Sure. But I'm just doing what I can. I have

organs like my kidneys (long before PF diagnosis) that might worry some,

but I've been assured they are going to outlast my lungs so no worry as

long as I take care and have them monitored as I should.

> >

> > Greetings air friends - hope everyone is relatively well tonight. I

> > have received my brand new $65 oximeter that was suggested by the

> > group, and now I'm a little worried about what I'm seeing. The

numbers

> > have been in the low 90s when I'm doing nothing, and when I play

with

> > my dogs a little, or go upstairs, they get into the 80s (84 - 87 -

> > 88). I am not currently on oxygen - didn't think I needed to be.

What

> > say you? I am not anxious to be saddled with all that goes with

> > oxygen, but on the other hand, I don't want to be stupid about it

> > either.

> >

>

>

>

>

>

>

> Barbara McD

> IPF, Sept 08

> Beautiful Western NC

>

>

>

> Let us not become weary in doing good, for at the proper time we will

reap a harvest if we do not give up. Galatians 6:9

>

>

>

>

>

>

>

>

>

> Barbara McD

> IPF, Sept 08

> Beautiful Western NC

>

>

>

> Let us not become weary in doing good, for at the proper time we will

reap a harvest if we do not give up. Galatians 6:9

>

[Guest guest]

Barbara

One oximeter tip. Especially with Raynaud's there may be a moment of

lag. When you first put it on your finger it may take a couple of

moments. So, you might see 88, 89, 90, 93......in succession, with the

93 being the true reading.

> > >

> > > Greetings air friends - hope everyone is relatively well tonight.

I

> > > have received my brand new $65 oximeter that was suggested by the

> > > group, and now I'm a little worried about what I'm seeing. The

> numbers

> > > have been in the low 90s when I'm doing nothing, and when I play

> with

> > > my dogs a little, or go upstairs, they get into the 80s (84 - 87 -

> > > 88). I am not currently on oxygen - didn't think I needed to be.

> What

> > > say you? I am not anxious to be saddled with all that goes with

> > > oxygen, but on the other hand, I don't want to be stupid about it

> > > either.

> > >

> >

> >

> >

> >

> >

> >

> > Barbara McD

> > IPF, Sept 08

> > Beautiful Western NC

> >

> >

> >

> > Let us not become weary in doing good, for at the proper time we

will

> reap a harvest if we do not give up. Galatians 6:9

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Barbara McD

> > IPF, Sept 08

> > Beautiful Western NC

> >

> >

> >

> > Let us not become weary in doing good, for at the proper time we

will

> reap a harvest if we do not give up. Galatians 6:9

> >

>

[Guest guest]

Of course we'll hang in there with you...

One way we know if we are in denial is if we do not accept facts as they are presented to us...

Perhaps your thinking is right.

Rationalizations are a defense mechanism to deny what we do not want to accept...

Now that's an easy explanation to describe text book jargon...

If you are getting no reading, you may not be using oximeter correctly. Does it need new batteries perhaps? Shouldn't since it's new... read the directions again. Are you confusing 02 level w/heart rate??

Is your finger "in" far enough?? Put finger in first and then push little black button.

Perhaps call the company and discuss w/them for clarity...

Sure sounds like you are having some difficulties. You hang in there too!

Love.

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

Re: Re: Uh oh

Bruce and :

Thanks for responding; I appreciate your input.

See - here's my thing. I really don't believe that I'm sick. I accept that I'll be sick SOMEDAY, but not yet. I feel perfectly fine, except for the coughing, and the tiredness, and the SOB and the racing heart. Those things are annoying, but then I get over them and all seems well.

I said to my pulmodude recently: "I'm not really very sick, am I?" And he replied "Well....., if someone has less than a 50% chance of surviving five years, I'd say they were pretty sick." I didn't take that as a wake-up call; I just thought it was funny. I'm not sure if I'm in denial, or just at peace. I sure don't want to be a hypochondriac.

Now, the oximeter readings are low. I, of course, think that maybe the meter isn't properly calibrated. Or maybe my Reynaud's is interfering with the reading (the pulmo said it might). Also, the pulmo (who is very well respected in this community) said that (I hope I have this right) a short-term exercise-induced drop in stats has not been shown to be detrimental.

I would guess that I'm not the only person who has ever experienced this waffling, but I hesitate to share it, lest you - my air friends - write me off as a pain in the neck. I am driving myself crazy, and I don't know how to stop.

So there you have it. Thanks for "listening".

Barbara McD

IPF 9/08

Beautiful Western NC

Bruce Moreland <brucemoreland (AT) gmail (DOT) com> wrote:

BarbaraI say thats the best $65 you ever spent. It may save your heart orkidneys and make you live longer and feel better. You need to find agood pulmonologist quickly and get a complete examination andprescription for oxygen.Curiosity as to whether you wear glasses? I ask because of the reference"saddled with all that goes with oxygen." No its not the same, but Iknow how so many react to their first glasses. And they are just to see.Now, oxygen protects your organs in addition to allowing you to dothings you couldn't otherwise. I've been on oxygen over a year now andits just normal for me now. Yes, it may be a bit inconvenient in someways, but so are the glasses I've worn for 54 years. So are all theother prescriptions I take. I just know that I could not enjoy life as Ido without oxygen and that I'm protecting my quality of life with it farmore than it takes away. Yes, finding the right forms of oxygen for eachof us is a challenge, but I'm set up and have adapted.Do you exercise in any way? You'd probably drop even lower then andexercise is very important to all of us. The other key check is what ishappening during your sleep. I quite suspect that much of your sleeptime is below 90% as we breathe less when asleep. You need yourpulmonologist to request an overnight oximeter recording device bedelivered to your home for use a couple of nights. The first night willbe without oxygen and the second with a small level of it.>> Greetings air friends - hope everyone is relatively well tonight. I> have received my brand new $65 oximeter that was suggested by the> group, and now I'm a little worried about what I'm seeing. The numbers> have been in the low 90s when I'm doing nothing, and when I play with> my dogs a little, or go upstairs, they get into the 80s (84 - 87 -> 88). I am not currently on oxygen - didn't think I needed to be. What> say you? I am not anxious to be saddled with all that goes with> oxygen, but on the other hand, I don't want to be stupid about it> either.>

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

[Guest guest]

Barbara

Many Raynaud's sufferers find warming their hands first helps, either with gloves or rubbing together or soaking in warm water. If the Raynaud's is causing a problem, you'll probably need them to use a earlobe oximeter. Not sure whether your pulmonologist would have one or not. However, most who are impacted by Raynaud's get no reading, no green light or whatever signal your oximeter has to show its got a good reading.

Here is a good article on some oximeter basics.

http://www.docstoc.com/docs/2543926/How-to-use-a-pulse-oximeter-and-contraindications

> > > >> > > > Greetings air friends - hope everyone is relatively well tonight.> I> > > > have received my brand new $65 oximeter that was suggested by the> > > > group, and now I'm a little worried about what I'm seeing. The> > numbers> > > > have been in the low 90s when I'm doing nothing, and when I play> > with> > > > my dogs a little, or go upstairs, they get into the 80s (84 - 87 -> > > > 88). I am not currently on oxygen - didn't think I needed to be.> > What> > > > say you? I am not anxious to be saddled with all that goes with> > > > oxygen, but on the other hand, I don't want to be stupid about it> > > > either.> > > >> > >> > >> > >> > >> > >> > >> > > Barbara McD> > > IPF, Sept 08> > > Beautiful Western NC> > >> > >> > >> > > Let us not become weary in doing good, for at the proper time we> will> > reap a harvest if we do not give up. Galatians 6:9> > >> > >> > >> > >> > >> > >> > >> > >> > >> > > Barbara McD> > > IPF, Sept 08> > > Beautiful Western NC> > >> > >> > >> > > Let us not become weary in doing good, for at the proper time we> will> > reap a harvest if we do not give up. Galatians 6:9> > >> >>

[Guest guest]

Barbara ... to avoid any MORE confusion for you, I'm basically saying the same thing as Bruce. Don't ignore your symptoms or the information you are given.

Bruce and I almost always end up at the same place but we approach it from very different angles. Take what you want, leave the rest.

I forgot about nail polish affecting a reading. Imagine a guy remembering that one! Good one brother-Bruce!

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

Re: Uh oh

BarbaraWith the cold and Raynaud's you might sometimes get no reading. Nailpolish can do it too although you can turn it upside down and get one.Hard to use it incorrectly. Just can't be sure with your Raynaud's, notknowing the extent or having seen a comparison read on another part ofyour body. However, the fact it is reading less with exertion than whenstill shows that its at least getting a comparative reading. It willjump around a bit. I'm at 96 right now on the sofa with no oxygen. If Iwalked twenty feet I'd be in the 80's. I require up to 5 lpm on thetreadmill, 3-4 when doing any activity, 2 when just walking to and fromthe kitchen or bathroom or around the house.As to your rationalizations, they are symptoms: coughing, tired, sob,racing heart. Whether or not you need oxygen and I highly suspect youdo, those are definitely not symptoms to be ignored. Just because youget use to them doesn't mean they are normal and consistent with nothingbeing wrong.I see you looking a bit for an all or nothing. Either I'm fine andnothing wrong and no need for oxygen or if I'm sick and need oxygen Ishould feel awful all the time. While some here got diagnosed afterserious events, most of us just thought that we were out of shape orallergies or repeated colds or something. I hadn't even heard of PF. Ithought worst case COPD-I had heard of it. So, why not I've got adisease, I have some symptoms but I'm still doing well overall and Iintend to continue doing so whether I need oxygen or not.Between the all or nothing there is lots of great life to be lived. Idon't determine lots by quantity, because no one knows how many years. Idetermine by quality. I'll repeat it a million times. I have PF,specifically UIP. I'm on oxygen and always will be. My life is verygood. When I get back to NC next spring I'll prove it to you.I very strongly suggest a trip to Duke. You can see the best there andno so much more about your condition. In one day they can do more thanyou can imagine and then a trip back to review it. I went to Chicago. Soworth it. I even considered a trip to Duke last spring.I intend to get every mile, every hour my lungs have out of them. Thatmeans protecting my heart and the rest of my body the best I can. Now,might something else happen? Sure. But I'm just doing what I can. I haveorgans like my kidneys (long before PF diagnosis) that might worry some,but I've been assured they are going to outlast my lungs so no worry aslong as I take care and have them monitored as I should.> >> > Greetings air friends - hope everyone is relatively well tonight. I> > have received my brand new $65 oximeter that was suggested by the> > group, and now I'm a little worried about what I'm seeing. Thenumbers> > have been in the low 90s when I'm doing nothing, and when I playwith> > my dogs a little, or go upstairs, they get into the 80s (84 - 87 -> > 88). I am not currently on oxygen - didn't think I needed to be.What> > say you? I am not anxious to be saddled with all that goes with> > oxygen, but on the other hand, I don't want to be stupid about it> > either.> >>>>>>>> Barbara McD> IPF, Sept 08> Beautiful Western NC>>>> Let us not become weary in doing good, for at the proper time we willreap a harvest if we do not give up. Galatians 6:9>>>>>>>>>> Barbara McD> IPF, Sept 08> Beautiful Western NC>>>> Let us not become weary in doing good, for at the proper time we willreap a harvest if we do not give up. Galatians 6:9>

[Guest guest]

Barbara

I don't "feel sick" most of the time either, even with the hose in my nose

when the docs said it's time to list for a transplant, i hesitate -- i thought i would have to really "feel sick"

there is no pain, I can walk, talk, eat, etc

I don't look sick, except for the hose in my nose

i compare it to my toothache-- around the time of the listing recommendation, i had a toothache, the dentist suggested root canal, and i immediately went for it-- no more toothache, what a relief!!!

there was physical pain that needed to be taken care of

it was an easy decision

this is different

there is no pain, just can't catch my breath

it's like an invisible disease, you can't see it

but it is there

and the changes in the PFT's, the 6 minute walk, the need for more lpm, the lower O2 SATs, the higher heart rates, the coughing-- more or less

the tiredness, decreased energy

not being able to do as much as I used to do

all of these invisible symptoms add up to a very sick person -- I am really talking about someone else's body, not mine, this is all academic -- lol

I sort of know where you are coming from

the oxygen was in the house a couple of weeks before I even checked out all of the equipment -- gradually i started using it -- walking the dog, taking the helios with me when i went out just in case i needed it -- i wasted a lot of liquid oxygen

the concentrator!!! I don't need that!!! later i will use it, down the road.........

well, last spring, when i had those violent coughing attacks, i started using the concentrator

now I'm stuck on it, can't get it out of my nose, ouch!!! don't pull!!! lol

[amazing that I can joke about this stuff -- I'm usually so serious]

before i forget, when sitting and doing nothing, i feel great--there is nothing wrong with me

then i move, and everything starts over againPink Joyce IPF 3/06 Pennsylvania

BarbaraI say thats the best $65 you ever spent. It may save your heart orkidneys and make you live longer and feel better. You need to find agood pulmonologist quickly and get a complete examination andprescription for oxygen.Curiosity as to whether you wear glasses? I ask because of the reference"saddled with all that goes with oxygen." No its not the same, but Iknow how so many react to their first glasses. And they are just to see.Now, oxygen protects your organs in addition to allowing you to dothings you couldn't otherwise. I've been on oxygen over a year now andits just normal for me now. Yes, it may be a bit inconvenient in someways, but so are the glasses I've worn for 54 years. So are all theother prescriptions I take. I just know that I could not enjoy life as Ido without oxygen and that I'm protecting my quality of life with it farmore than it takes away. Yes, finding the

right forms of oxygen for eachof us is a challenge, but I'm set up and have adapted.Do you exercise in any way? You'd probably drop even lower then andexercise is very important to all of us. The other key check is what ishappening during your sleep. I quite suspect that much of your sleeptime is below 90% as we breathe less when asleep. You need yourpulmonologist to request an overnight oximeter recording device bedelivered to your home for use a couple of nights. The first night willbe without oxygen and the second with a small level of it.>> Greetings air friends - hope everyone is relatively well tonight. I> have received my brand new $65 oximeter that was suggested by the> group, and now I'm a little worried about what I'm

seeing. The numbers> have been in the low 90s when I'm doing nothing, and when I play with> my dogs a little, or go upstairs, they get into the 80s (84 - 87 -> 88). I am not currently on oxygen - didn't think I needed to be. What> say you? I am not anxious to be saddled with all that goes with> oxygen, but on the other hand, I don't want to be stupid about it> either.>

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

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barbara

going upstairs, decreases the O2 SATs

that was one of the diagnositic tools way back when -- the first time i saw the pulmonologistPink Joyce IPF 3/06 Pennsylvania

Subject: Uh ohTo: Breathe-Support Date: Friday, November 28, 2008, 11:22 PM

Greetings air friends - hope everyone is relatively well tonight. I have received my brand new $65 oximeter that was suggested by the group, and now I'm a little worried about what I'm seeing. The numbers have been in the low 90s when I'm doing nothing, and when I play with my dogs a little, or go upstairs, they get into the 80s (84 - 87 - 88). I am not currently on oxygen - didn't think I needed to be. What say you? I am not anxious to be saddled with all that goes with oxygen, but on the other hand, I don't want to be stupid about it either.

[Guest guest]

Ha ha Mama Sher... ah Well ........ya GOT me......Diary one minute & Diary the next.... those fingers of mine sure do the Keyboard Jumble Hop!

Hoo Roo for now,

SGIO

> > >> > > Greetings air friends - hope everyone is relatively well tonight. I> > > have received my brand new $65 oximeter that was suggested by the> > > group, and now I'm a little worried about what I'm seeing. The> numbers> > > have been in the low 90s when I'm doing nothing, and when I play> with> > > my dogs a little, or go upstairs, they get into the 80s (84 - 87 -> > > 88). I am not currently on oxygen - didn't think I needed to be.> What> > > say you? I am not anxious to be saddled with all that goes with> > > oxygen, but on the other hand, I don't want to be stupid about it> > > either.> > >> >>

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Dear Dr Bruce,

I'm fine on the 6 minute walk test... that's still a doddle for me BUT I'm not content with 6 minutes of WALKING!

It's when I'm really using upper thigh muscle at the gym that the beeper goes OFF......Thigh Squats against the wall sort of caper...... & extending the 3kg ball up from my chest & above my head! that sort of number! The 30 KG Leg Press only sends me down to the 89/90 mark so that one's pretty safe!

BUT I DO REDOVER PRETTY QUICKLY

'Deep Water Running' twice a week has been going really well.......lots of leg work but no gravity to contend with!

No probs keeping up with 2 enthusiastic little Pups on the evening jaunt around the block! They trot like a pair of Horses in Harness & occasionally BOLT when they know we've coming towards the gate of every house that has a DOG! I mean the Sats drop but not too horrendously!

With my Pulmo, like Peggy, I'm a once a year gal unless I get really crook again! 'Crook as Rookwood' as a New South Welshman of the Tough Era (1930's) would say! (Rookwood is Sydney's largest cemetery!!!!!)

You're right on 2 scores my Rehab Nurse IS much more experienced with COPD & I too suspect Oz Medicos are a little reluctant to prescribe O2.... there's no financial assistance until the Blood Oxygen Levels are far worse than the mere 6 minute walk test! I'll be paying for my own before that time I've no doubt!

My Rehab Nurse was quick to suggest a Sleep Test during the year when I was waking up with lots of leg muscle pain but that's gone away so I've not followed up on that! Promise I will if they return!

Until then I DO try to exercise safely BUT with purpose & an eye to actually getting my muscles STRONGER! My gym work has really upped the ante on what I was doing at Rehab which started to feel like 'Kindergarten' level for me! I am under an Exercise Psyiologist....GOSH I'm like the Toddler in the gym where all these Muscle Builders work out... a gal could have a Picnic on THEIR Muscle Mass.. they're very sweet to me & cart & carry the big weights off their bars & put my piddly weighted bars on for me!

It IS working... I'm a whole lot fitter & more importantly STRONGER & have lots more energy! Over the past year I've now dropped over 10 kgs (19 -20 lbs) of my excess fat store! Got another 7 to go! At least I'm back in the upper reaches of the Healthy BMI weight for age guide! I'll never return to the lower limit like I used to be, before Middle age set in, but hey somewhere in the middle will be fantastic!

Here's to Grabbing LIFE by the Short n' Curlies!

SGIO AND GIO

> > >> > > Greetings air friends - hope everyone is relatively well tonight. I> > > have received my brand new $65 oximeter that was suggested by the> > > group, and now I'm a little worried about what I'm seeing. The> numbers> > > have been in the low 90s when I'm doing nothing, and when I play> with> > > my dogs a little, or go upstairs, they get into the 80s (84 - 87 -> > > 88). I am not currently on oxygen - didn't think I needed to be.> What> > > say you? I am not anxious to be saddled with all that goes with> > > oxygen, but on the other hand, I don't want to be stupid about it> > > either.> > >> >>

[Guest guest]

Well SGIO, I thought maybe she also said no more milk! lol. Or ice cream!

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

Re: Uh oh

Ha ha Mama Sher... ah Well ........ya GOT me......Diary one minute & Diary the next.... those fingers of mine sure do the Keyboard Jumble Hop!

Hoo Roo for now,

SGIO

> > >> > > Greetings air friends - hope everyone is relatively well tonight. I> > > have received my brand new $65 oximeter that was suggested by the> > > group, and now I'm a little worried about what I'm seeing. The> numbers> > > have been in the low 90s when I'm doing nothing, and when I play> with> > > my dogs a little, or go upstairs, they get into the 80s (84 - 87 -> > > 88). I am not currently on oxygen - didn't think I needed to be.> What> > > say you? I am not anxious to be saddled with all that goes with> > > oxygen, but on the other hand, I don't want to be stupid about it> > > either.> > >> >>

[Guest guest]

Hope we helped Barb.. I relate to what you're saying... I like to think OI have an IMPEDIMENT... rather than 'I'm SICK!

SICK is for people in BEDS not out n' about!

Just on the Reynaud's.. I too have that little curse.. YES it DOES affect the reading when it's 'upon' us! In those times it can be pointless to take any notice of the readings at all!

I bought a new 2nd oximeter that shows a reading just for that situation.... it's been most interesting checking out each finger.. they all have different readings when IT is upon me!

It's a Heal Force Prince 100c , made in China. It was more expensive than my 1st but is very handy for the Reynaud's.

Keep talking to us Barb.. confusion.... coming to grips... its all part of our journey...

Cheers,

GIO

> >> > Greetings air friends - hope everyone is relatively well tonight. I> > have received my brand new $65 oximeter that was suggested by the> > group, and now I'm a little worried about what I'm seeing. The numbers> > have been in the low 90s when I'm doing nothing, and when I play with> > my dogs a little, or go upstairs, they get into the 80s (84 - 87 -> > 88). I am not currently on oxygen - didn't think I needed to be. What> > say you? I am not anxious to be saddled with all that goes with> > oxygen, but on the other hand, I don't want to be stupid about it> > either.> >> > > > > > > Barbara McD> IPF, Sept 08> Beautiful Western NC> > > > Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9>

[Guest guest]

Well of course she did ... or at least no more FULL CREAM Milk... I say hooey to THAT... I NEED preformed Vitamin A so I'll just be Stubborn on THAT one... ICE CREAM...... now that's a trickier issue... can't see how I;m going to enjoy my iced Coffee on a hot summer's day without a little of THAT!

GOSH just how much Sacrifice do they expect a gal can make!

SGIO

> > > >> > > > Greetings air friends - hope everyone is relatively well tonight. I> > > > have received my brand new $65 oximeter that was suggested by the> > > > group, and now I'm a little worried about what I'm seeing. The> > numbers> > > > have been in the low 90s when I'm doing nothing, and when I play> > with> > > > my dogs a little, or go upstairs, they get into the 80s (84 - 87 -> > > > 88). I am not currently on oxygen - didn't think I needed to be.> > What> > > > say you? I am not anxious to be saddled with all that goes with> > > > oxygen, but on the other hand, I don't want to be stupid about it> > > > either.> > > >> > >> >>