Re: Sunday afternoon rant 2

[Guest guest]

Barbara,

I know what you mean about the NC mountains. When I visit my son it sometimes feels like everything is uphill from where ever I happen to be standing. Up hill to get there and curiously enough then it seems to be up hill to get back.

I think your idea of keeping records for awhile is an excellent one. You will then be able to give your pulmo a clearer picture of what your sats do when you are doing normal things in your every day life.

Keep us posted!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, April 5, 2009 8:29:00 PMSubject: Sunday afternoon rant 2

Thanks for the responses, Bruce, Beth, Jane, Sher and Joyce. I do appreciate the feedback. I usually am very positive, and focus on the good rather than the bad. It keeps me a fairly happy person. I am beginning to think that in spite of what BOTH pulmodudes say, I do need oxygen. They both say that I'm "borderline" . I'm tired of avoiding doing things I want to do because my heart goes to racing, and my throat goes dry, and I feel like I just have to sit down NOW.Living in the mountains, the walk back up my driveway is exactly that - UP. I guess I'll need to put a paper and pencil in my pocket and the oxymeter on a cord around my neck, and just start keeping records. Again, thanks!B

[Guest guest]

Barbara,

I know what you mean about the NC mountains. When I visit my son it sometimes feels like everything is uphill from where ever I happen to be standing. Up hill to get there and curiously enough then it seems to be up hill to get back.

I think your idea of keeping records for awhile is an excellent one. You will then be able to give your pulmo a clearer picture of what your sats do when you are doing normal things in your every day life.

Keep us posted!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, April 5, 2009 8:29:00 PMSubject: Sunday afternoon rant 2

Thanks for the responses, Bruce, Beth, Jane, Sher and Joyce. I do appreciate the feedback. I usually am very positive, and focus on the good rather than the bad. It keeps me a fairly happy person. I am beginning to think that in spite of what BOTH pulmodudes say, I do need oxygen. They both say that I'm "borderline" . I'm tired of avoiding doing things I want to do because my heart goes to racing, and my throat goes dry, and I feel like I just have to sit down NOW.Living in the mountains, the walk back up my driveway is exactly that - UP. I guess I'll need to put a paper and pencil in my pocket and the oxymeter on a cord around my neck, and just start keeping records. Again, thanks!B

[Guest guest]

Great idea Barb -- keep records of your SATS and show the docs

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Sunday afternoon rant 2To: Breathe-Support Date: Sunday, April 5, 2009, 8:29 PM

Thanks for the responses, Bruce, Beth, Jane, Sher and Joyce. I do appreciate the feedback. I usually am very positive, and focus on the good rather than the bad. It keeps me a fairly happy person. I am beginning to think that in spite of what BOTH pulmodudes say, I do need oxygen. They both say that I'm "borderline" . I'm tired of avoiding doing things I want to do because my heart goes to racing, and my throat goes dry, and I feel like I just have to sit down NOW.Living in the mountains, the walk back up my driveway is exactly that - UP. I guess I'll need to put a paper and pencil in my pocket and the oxymeter on a cord around my neck, and just start keeping records. Again, thanks!B

[Guest guest]

Great idea Barb -- keep records of your SATS and show the docs

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Sunday afternoon rant 2To: Breathe-Support Date: Sunday, April 5, 2009, 8:29 PM

Thanks for the responses, Bruce, Beth, Jane, Sher and Joyce. I do appreciate the feedback. I usually am very positive, and focus on the good rather than the bad. It keeps me a fairly happy person. I am beginning to think that in spite of what BOTH pulmodudes say, I do need oxygen. They both say that I'm "borderline" . I'm tired of avoiding doing things I want to do because my heart goes to racing, and my throat goes dry, and I feel like I just have to sit down NOW.Living in the mountains, the walk back up my driveway is exactly that - UP. I guess I'll need to put a paper and pencil in my pocket and the oxymeter on a cord around my neck, and just start keeping records. Again, thanks!B

[Guest guest]

For goodness SAKE Doctors where's the point in putting off O2 delivery when a patient is BORDERLINE... what's it going to DO that's so terrible that they have to maintain such CAUTION to WAIT until the blinkin' test shows DEFINITELY NEEDS O2......I mean CRIKEY is it POISON ... will it bring on the Downfall of the Nation.....

What the Blinkin HECK would it matter if the patient got it on the UP side of Down rather than the Down side of UP!

It's THAT Silly!!!!!!!!!!!!!!!!!!!!!!!!

By the way I remember our HRh Queen Huggy Joyce got he O2 prescriberd after a sinilar debacle... she got to wear some device that actually measure & Recordedf her O2 Sats all day & night while going about her daily life. That test showed a VERY different story than her current 6 MWT did!

She was put on O2 immediately!

Does anyone know what this device is & how widespread is it's practical use?????

GIO

>> Thanks for the responses, Bruce, Beth, Jane, Sher and Joyce. I do appreciate the feedback. I usually am very positive, and focus on the good rather than the bad. It keeps me a fairly happy person. I am beginning to think that in spite of what BOTH pulmodudes say, I do need oxygen. They both say that I'm "borderline". I'm tired of avoiding doing things I want to do because my heart goes to racing, and my throat goes dry, and I feel like I just have to sit down NOW.> > Living in the mountains, the walk back up my driveway is exactly that - UP. I guess I'll need to put a paper and pencil in my pocket and the oxymeter on a cord around my neck, and just start keeping records. > > Again, thanks!> B>

[Guest guest]

The device is just a 24 hour recording oximeter. The advantage is it

will show everything you do in the day. The disadvantage is that there

may be other things you don't do on that day plus you may not remember

what you were doing at each time-may not be able to correlate action to

reading. However, excellent tool. Now, ongoing use of oximeter provides

similar plus is ongoing.

Why do they delay....not even a good excuse, but part may be that they

are so use to COPD patients. They don't realize how much the PF patient

is changing with activity and they overestimate the danger of two much

oxygen.

> >

> > Thanks for the responses, Bruce, Beth, Jane, Sher and Joyce. I

do

> appreciate the feedback. I usually am very positive, and focus on the

> good rather than the bad. It keeps me a fairly happy person. I am

> beginning to think that in spite of what BOTH pulmodudes say, I do

need

> oxygen. They both say that I'm " borderline " . I'm tired of avoiding

doing

> things I want to do because my heart goes to racing, and my throat

goes

> dry, and I feel like I just have to sit down NOW.

> >

> > Living in the mountains, the walk back up my driveway is exactly

that

> - UP. I guess I'll need to put a paper and pencil in my pocket and the

> oxymeter on a cord around my neck, and just start keeping records.

> >

> > Again, thanks!

> > B

> >

>

[Guest guest]

I can only see the 24 hour test as a HUGE advantage Bruce

1. It is Hard irrefutable data that Medicos would 'believe'

2. I'd make darn sure I was as active as a flea -in - a - fit

3. I'd go to the trouble of diarising in Minute Detail everything I was doing... every 1/2 hour if neccessary ... HECk every blinkin' 5 Minutes if that was what they wanted!

So bring it on.. I'll now go the HUNT to find myself this service in OZ!

At least it would provide a Baseline & reassure ME if I was still in the Safety Zone.... although going by the Bips (denoting below 90 readings) my own Healthforce oximeter was giving off this morning when I was making the bed as usual... I think Not!

I was dropping into the 77 zone whenever I lifted stuff up to shift or shake ... like shaking out the sheets or soft summer doona! 85 or thereabouts for bending over to pull up said sheets & smooth stuff out...I've never had the oximeter on while doing this activity before.

No blinkin' wonder I'm having trouble organising the Grey Matter at times....

GIO

> > >> > > Thanks for the responses, Bruce, Beth, Jane, Sher and Joyce. I> do> > appreciate the feedback. I usually am very positive, and focus on the> > good rather than the bad. It keeps me a fairly happy person. I am> > beginning to think that in spite of what BOTH pulmodudes say, I do> need> > oxygen. They both say that I'm "borderline". I'm tired of avoiding> doing> > things I want to do because my heart goes to racing, and my throat> goes> > dry, and I feel like I just have to sit down NOW.> > >> > > Living in the mountains, the walk back up my driveway is exactly> that> > - UP. I guess I'll need to put a paper and pencil in my pocket and the> > oxymeter on a cord around my neck, and just start keeping records.> > >> > > Again, thanks!> > > B> > >> >>

[Guest guest]

I can only see the 24 hour test as a HUGE advantage Bruce

1. It is Hard irrefutable data that Medicos would 'believe'

2. I'd make darn sure I was as active as a flea -in - a - fit

3. I'd go to the trouble of diarising in Minute Detail everything I was doing... every 1/2 hour if neccessary ... HECk every blinkin' 5 Minutes if that was what they wanted!

So bring it on.. I'll now go the HUNT to find myself this service in OZ!

At least it would provide a Baseline & reassure ME if I was still in the Safety Zone.... although going by the Bips (denoting below 90 readings) my own Healthforce oximeter was giving off this morning when I was making the bed as usual... I think Not!

I was dropping into the 77 zone whenever I lifted stuff up to shift or shake ... like shaking out the sheets or soft summer doona! 85 or thereabouts for bending over to pull up said sheets & smooth stuff out...I've never had the oximeter on while doing this activity before.

No blinkin' wonder I'm having trouble organising the Grey Matter at times....

GIO

> > >> > > Thanks for the responses, Bruce, Beth, Jane, Sher and Joyce. I> do> > appreciate the feedback. I usually am very positive, and focus on the> > good rather than the bad. It keeps me a fairly happy person. I am> > beginning to think that in spite of what BOTH pulmodudes say, I do> need> > oxygen. They both say that I'm "borderline". I'm tired of avoiding> doing> > things I want to do because my heart goes to racing, and my throat> goes> > dry, and I feel like I just have to sit down NOW.> > >> > > Living in the mountains, the walk back up my driveway is exactly> that> > - UP. I guess I'll need to put a paper and pencil in my pocket and the> > oxymeter on a cord around my neck, and just start keeping records.> > >> > > Again, thanks!> > > B> > >> >>

[Guest guest]

Sure sounds like you need some oxygen. Changing the bed is a very

difficult task with the bending and pulling. The 85 is bad enough but

the 77 is a matter of my great concern. You've been short of breath long

enough that any gradual slide you really didn't catch quickly. I know

I'd learned to live on 85's and 80's and below under extreme exertion. I

suspect the times that led me to insist there was an issue I was in the

60's or even 50's from what I know now.

I would also make sure I was active and bending and lifting on the 24

hour oximeter. Now, if your doctor won't believe what you tell him from

a regular oximeter, then time for a new doctor anyway. Just easier said

than done where you are. Of course you know the answer by the Bips but

you knew before which is what made you wear it this morning while doing

those things.

Thats one thing too you find out when you first get oxygen. You'd

forgotten what it felt like to have good saturation while undertaking

activity.

As to your grey matter, you put on such a show going from GIO to SGIO

and back, how would we know if it wasn't organized. We'd just think you

were being Scilly.

> > > >

> > > > Thanks for the responses, Bruce, Beth, Jane, Sher and Joyce.

I

> > do

> > > appreciate the feedback. I usually am very positive, and focus on

> the

> > > good rather than the bad. It keeps me a fairly happy person. I am

> > > beginning to think that in spite of what BOTH pulmodudes say, I do

> > need

> > > oxygen. They both say that I'm " borderline " . I'm tired of avoiding

> > doing

> > > things I want to do because my heart goes to racing, and my throat

> > goes

> > > dry, and I feel like I just have to sit down NOW.

> > > >

> > > > Living in the mountains, the walk back up my driveway is exactly

> > that

> > > - UP. I guess I'll need to put a paper and pencil in my pocket and

> the

> > > oxymeter on a cord around my neck, and just start keeping records.

> > > >

> > > > Again, thanks!

> > > > B

> > > >

> > >

> >

>

[Guest guest]

Sure sounds like you need some oxygen. Changing the bed is a very

difficult task with the bending and pulling. The 85 is bad enough but

the 77 is a matter of my great concern. You've been short of breath long

enough that any gradual slide you really didn't catch quickly. I know

I'd learned to live on 85's and 80's and below under extreme exertion. I

suspect the times that led me to insist there was an issue I was in the

60's or even 50's from what I know now.

I would also make sure I was active and bending and lifting on the 24

hour oximeter. Now, if your doctor won't believe what you tell him from

a regular oximeter, then time for a new doctor anyway. Just easier said

than done where you are. Of course you know the answer by the Bips but

you knew before which is what made you wear it this morning while doing

those things.

Thats one thing too you find out when you first get oxygen. You'd

forgotten what it felt like to have good saturation while undertaking

activity.

As to your grey matter, you put on such a show going from GIO to SGIO

and back, how would we know if it wasn't organized. We'd just think you

were being Scilly.

> > > >

> > > > Thanks for the responses, Bruce, Beth, Jane, Sher and Joyce.

I

> > do

> > > appreciate the feedback. I usually am very positive, and focus on

> the

> > > good rather than the bad. It keeps me a fairly happy person. I am

> > > beginning to think that in spite of what BOTH pulmodudes say, I do

> > need

> > > oxygen. They both say that I'm " borderline " . I'm tired of avoiding

> > doing

> > > things I want to do because my heart goes to racing, and my throat

> > goes

> > > dry, and I feel like I just have to sit down NOW.

> > > >

> > > > Living in the mountains, the walk back up my driveway is exactly

> > that

> > > - UP. I guess I'll need to put a paper and pencil in my pocket and

> the

> > > oxymeter on a cord around my neck, and just start keeping records.

> > > >

> > > > Again, thanks!

> > > > B

> > > >

> > >

> >

>

[Guest guest]

it's a specially made oximeter

my o2 supplier just sent one to me because medicare needed proof that my o2 dropped into the 80's

my 6mw didn't demonstrate that

so the oximeter came with the following instructions:

30 minutes sitting with room air

8 minutes of activity with room air

6 minutes of activity with O2

the oximeter had a recording device

walked upstairs-- o2 dropped, heart rate went up

medicare got it's proof

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: Sunday afternoon rant 2To: Breathe-Support Date: Monday, April 6, 2009, 9:04 PM

For goodness SAKE Doctors where's the point in putting off O2 delivery when a patient is BORDERLINE.. . what's it going to DO that's so terrible that they have to maintain such CAUTION to WAIT until the blinkin' test shows DEFINITELY NEEDS O2......I mean CRIKEY is it POISON ... will it bring on the Downfall of the Nation.....

What the Blinkin HECK would it matter if the patient got it on the UP side of Down rather than the Down side of UP!

It's THAT Silly!!!!!!! !!!!!!!!! !!!!!!!!

By the way I remember our HRh Queen Huggy Joyce got he O2 prescriberd after a sinilar debacle... she got to wear some device that actually measure & Recordedf her O2 Sats all day & night while going about her daily life. That test showed a VERY different story than her current 6 MWT did!

She was put on O2 immediately!

Does anyone know what this device is & how widespread is it's practical use?????

GIO

>> Thanks for the responses, Bruce, Beth, Jane, Sher and Joyce. I do appreciate the feedback. I usually am very positive, and focus on the good rather than the bad. It keeps me a fairly happy person. I am beginning to think that in spite of what BOTH pulmodudes say, I do need oxygen. They both say that I'm "borderline" . I'm tired of avoiding doing things I want to do because my heart goes to racing, and my throat goes dry, and I feel like I just have to sit down NOW.> > Living in the mountains, the walk back up my driveway is exactly that - UP. I guess I'll need to put a paper and pencil in my pocket and the oxymeter on a cord around my neck, and just start keeping records. > > Again, thanks!> B>

[Guest guest]

it's a specially made oximeter

my o2 supplier just sent one to me because medicare needed proof that my o2 dropped into the 80's

my 6mw didn't demonstrate that

so the oximeter came with the following instructions:

30 minutes sitting with room air

8 minutes of activity with room air

6 minutes of activity with O2

the oximeter had a recording device

walked upstairs-- o2 dropped, heart rate went up

medicare got it's proof

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: Sunday afternoon rant 2To: Breathe-Support Date: Monday, April 6, 2009, 9:04 PM

For goodness SAKE Doctors where's the point in putting off O2 delivery when a patient is BORDERLINE.. . what's it going to DO that's so terrible that they have to maintain such CAUTION to WAIT until the blinkin' test shows DEFINITELY NEEDS O2......I mean CRIKEY is it POISON ... will it bring on the Downfall of the Nation.....

What the Blinkin HECK would it matter if the patient got it on the UP side of Down rather than the Down side of UP!

It's THAT Silly!!!!!!! !!!!!!!!! !!!!!!!!

By the way I remember our HRh Queen Huggy Joyce got he O2 prescriberd after a sinilar debacle... she got to wear some device that actually measure & Recordedf her O2 Sats all day & night while going about her daily life. That test showed a VERY different story than her current 6 MWT did!

She was put on O2 immediately!

Does anyone know what this device is & how widespread is it's practical use?????

GIO

>> Thanks for the responses, Bruce, Beth, Jane, Sher and Joyce. I do appreciate the feedback. I usually am very positive, and focus on the good rather than the bad. It keeps me a fairly happy person. I am beginning to think that in spite of what BOTH pulmodudes say, I do need oxygen. They both say that I'm "borderline" . I'm tired of avoiding doing things I want to do because my heart goes to racing, and my throat goes dry, and I feel like I just have to sit down NOW.> > Living in the mountains, the walk back up my driveway is exactly that - UP. I guess I'll need to put a paper and pencil in my pocket and the oxymeter on a cord around my neck, and just start keeping records. > > Again, thanks!> B>

[Guest guest]

.....my oximeter has to be held steady/still. Do you have the little manual that comes with it?

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

Re: Sunday afternoon rant 2

I can only see the 24 hour test as a HUGE advantage Bruce

1. It is Hard irrefutable data that Medicos would 'believe'

2. I'd make darn sure I was as active as a flea -in - a - fit

3. I'd go to the trouble of diarising in Minute Detail everything I was doing... every 1/2 hour if neccessary ... HECk every blinkin' 5 Minutes if that was what they wanted!

So bring it on.. I'll now go the HUNT to find myself this service in OZ!

At least it would provide a Baseline & reassure ME if I was still in the Safety Zone.... although going by the Bips (denoting below 90 readings) my own Healthforce oximeter was giving off this morning when I was making the bed as usual... I think Not!

I was dropping into the 77 zone whenever I lifted stuff up to shift or shake ... like shaking out the sheets or soft summer doona! 85 or thereabouts for bending over to pull up said sheets & smooth stuff out...I've never had the oximeter on while doing this activity before.

No blinkin' wonder I'm having trouble organising the Grey Matter at times....

GIO

> > >> > > Thanks for the responses, Bruce, Beth, Jane, Sher and Joyce. I> do> > appreciate the feedback. I usually am very positive, and focus on the> > good rather than the bad. It keeps me a fairly happy person. I am> > beginning to think that in spite of what BOTH pulmodudes say, I do> need> > oxygen. They both say that I'm "borderline". I'm tired of avoiding> doing> > things I want to do because my heart goes to racing, and my throat> goes> > dry, and I feel like I just have to sit down NOW.> > >> > > Living in the mountains, the walk back up my driveway is exactly> that> > - UP. I guess I'll need to put a paper and pencil in my pocket and the> > oxymeter on a cord around my neck, and just start keeping records.> > >> > > Again, thanks!> > > B> > >> >>

[Guest guest]

.....my oximeter has to be held steady/still. Do you have the little manual that comes with it?

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

Re: Sunday afternoon rant 2

I can only see the 24 hour test as a HUGE advantage Bruce

1. It is Hard irrefutable data that Medicos would 'believe'

2. I'd make darn sure I was as active as a flea -in - a - fit

3. I'd go to the trouble of diarising in Minute Detail everything I was doing... every 1/2 hour if neccessary ... HECk every blinkin' 5 Minutes if that was what they wanted!

So bring it on.. I'll now go the HUNT to find myself this service in OZ!

At least it would provide a Baseline & reassure ME if I was still in the Safety Zone.... although going by the Bips (denoting below 90 readings) my own Healthforce oximeter was giving off this morning when I was making the bed as usual... I think Not!

I was dropping into the 77 zone whenever I lifted stuff up to shift or shake ... like shaking out the sheets or soft summer doona! 85 or thereabouts for bending over to pull up said sheets & smooth stuff out...I've never had the oximeter on while doing this activity before.

No blinkin' wonder I'm having trouble organising the Grey Matter at times....

GIO

> > >> > > Thanks for the responses, Bruce, Beth, Jane, Sher and Joyce. I> do> > appreciate the feedback. I usually am very positive, and focus on the> > good rather than the bad. It keeps me a fairly happy person. I am> > beginning to think that in spite of what BOTH pulmodudes say, I do> need> > oxygen. They both say that I'm "borderline". I'm tired of avoiding> doing> > things I want to do because my heart goes to racing, and my throat> goes> > dry, and I feel like I just have to sit down NOW.> > >> > > Living in the mountains, the walk back up my driveway is exactly> that> > - UP. I guess I'll need to put a paper and pencil in my pocket and the> > oxymeter on a cord around my neck, and just start keeping records.> > >> > > Again, thanks!> > > B> > >> >>

[Guest guest]

Sher, the finger pulse oximeter I have can be used while active... it doesn't have a 'record' function so is no good for the 24 hour test we've been talking about. That would be an expensive piece of equipment .....not for general home use.

Mine is a Health Force Oximeter Prince 100C FDA approved in the USA. It has a handy option for reading out my finger tip blood flow so I know if my reaqdings are being affected by my Reynaud's problem. Cna't get a trusty reading if the blood supply to my fingers is too low.

GIO> > > >> > > > Thanks for the responses, Bruce, Beth, Jane, Sher and Joyce. I> > do> > > appreciate the feedback. I usually am very positive, and focus on the> > > good rather than the bad. It keeps me a fairly happy person. I am> > > beginning to think that in spite of what BOTH pulmodudes say, I do> > need> > > oxygen. They both say that I'm "borderline". I'm tired of avoiding> > doing> > > things I want to do because my heart goes to racing, and my throat> > goes> > > dry, and I feel like I just have to sit down NOW.> > > >> > > > Living in the mountains, the walk back up my driveway is exactly> > that> > > - UP. I guess I'll need to put a paper and pencil in my pocket and the> > > oxymeter on a cord around my neck, and just start keeping records.> > > >> > > > Again, thanks!> > > > B> > > >> > >> >>