Re: 's trip

[Guest guest]

God's speed and Blessings on your trip.. Have a BALL.

Love and Prayers, Peggy

ipf 6/04 Florida

" Worry looks around,

Sorry looks back,

Faith looks up. "

Dear Huggy Joyce,

I’m relieved to hear things are on the improve for

you..I’ve been too busy to be at my laptop this week (final

preparations for the 7-ring circus OS trip!)

Just want to tell you something I learnt from my

Pul. Rehab Sessions. Apparently being SOB is not always an indicator

of low O sats. SOB is also related to how the lungs are generally

functioning so those of us with PF will have lungs that are getting

increasingly STIFF & not efficiently moving in & out (like bellows),

thus making us feel SOB.

When we need to breathe harder because we’re exerting

ourselves our ‘bellows’ just don’t work efficiently enough to keep

up! However the body have just had a relatively ‘good’ flow of oxygen

& breathing harder often increases that flow. The O levels can fall a

few minutes AFTER the SOB.

Low Sats levels are an indication that not enough O

is getting across our alveoli air sacs & into our blood stream. Of

course with PF our air sacs get squashed by the increasing stiffness

of our lungs too, so both things can combine & that’s when SOB & low

Sats do go hand in hand.

That’s why our doctors are so keen on knowing what our

Diffusion Sats are – they reflect the capacity of our air sacs to

exchange oxygen into the blood stream & the ability to remove the

waste carbon dioxide from returning blood to the lungs (what we’re

meant to breathe OUT). High Carbon Dioxide levels in our blood

streams indicate that we retaining too much of this waste product.

My Pul Rehab people stress that the best indicator is

how long it takes for the O Sats to return to what is normal for each

person at their own stage of the disease.

Now, if anyone out there has been told anything

different to this please let us know….I’m just trying to help by

explaining the process (as I’ve understood it) & I’d hate to give out

dud info!

Take care,

in Oz

IPF: Fibrotic NSIP/UIP?

(May 2007)

From: Breathe-Support [mailto:Breathe-

Support ] On Behalf Of Joyce

Sent: Saturday, 22 September 2007 1:12 AM

To: Breathe-Support

Subject: Re: Chattanooga

Peggy,

I have only had my numbers drop a few times and then it was 78-88. I

had it on 7.5 so I changed it to 8. Oddly, sometimes I get so sob

but my numbers stay stay up.

I usually call and have Apria deliver whatever I need to the hotel.

But, I don't know this time due to all the confusion. If they give

me liquid and tanks, I can do it, but otherwise, I will see about

bearing the expense myself. I am as usual waiting. I may bring my

own concentrator, but our car is small. We will get it worked out.

Life used to be simple! Besides oxygen needs, I have to have

nebulizers, flutter valve, percussion vest and all the peices and

parts and meds. Aaaaargh!

But, I'll get 'er done. I am an old pro.

Hugs, Joyce D.

PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

2 COR. 12:10 ....when I am weak, then I am strong.

> > > >

> > > > Hi Group, I couldnt stand the thought of missing a

> > > > meal at that restaurant after seeing the menu. I had

> > > > tried to buy a tkt before but the price had doubled

> > > > from what it was . I checked today and the price was

> > > > back to the original so I booked it. Leanne I am on

> > > > the same flight as you. I am excited to meet everyone

> > > > and I hope we are all feeling better by then.

> > > > IPF 2/07 Il

> > > >

> > > >

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