Re: 's Review

[Guest guest]

You might educate them all yet. It's just amazing how little so many in

the profession know about the disease. Great that you can do so much

without oxygen but now that you'll get it for those things that do take

your sats down.

>

>

>

> Latest news on moi is that I've just finished my PF Review & things

seem

> pretty stable. Having said that a major 'miracle' has occurred .. I

managed

> to 'get through' to my Respiratory Specialist regarding my falling

Sats when

> I'm being 'active'..I do suspect that my Pulmonary Rehab Nurse has

been

> talking to him about my situation. It was a totally different response

to

> last year when I'd already broached the subject of O2 & how the 6

minute

> walk test was no indicator of the reality of my daily life.

>

> At long last he asked if I'd ever had a 24 hour 'activity' Test (well

> NO.'cos he'd never organised it or even previously mentioned the

existence

> of such a thing!) I told him I had my own oximeter & that it was

falling to

> 85 when I was doing my usual stuff like gardening, climbing up n' down

> ladders changing lights.chasing the Sistas, housework of all

descriptions,

> bush walking, gym capers.etc etc.

>

> Aaaah he responded, well we'd better organise some O2 for you..I

nearly

> dropped off the chair in surprise..

>

> Interestingly I felt a great WEIGHT lifted at the same time.I realised

I've

> been quite stressed about this O2 business..knowing the implication of

> plunging O2 but being unwilling to stop being ME! The reality is that

I

> probably should've been on 'exertion O2' right from when I was first

> diagnosed. ah well better late than never!

>

> Last year when I had my Review I asked the Doc how would HE would know

when

> I'd need O2..he said the Pulmo Rehab Nurse would advise him! Soooooo

a few

> months back I decided to send material on the subject through to my

> Pulmonary Rehab Nurse to educate HER on PF & O2 therapy.I also sent

her an

> e-mail setting out just what was going on for me with the oximeter &

how

> puzzled I was that O2 wasn't being suggested. Until then she'd kept

saying

> 'oh no, not yet!' After my 'education' process she changed her tune to

> wondering herself why it took so long for PF patients to be put on O2!

>

> As the Respiratory Physician explained there is no subsidy for O2 in

Oz,

> until a patient's Sats fall below 90 SITTING! That is the criteria

they've

> all been using..I told him I'm quite prepared to pay for my own well

being &

> sense of being free to live my normal life.

>

> I'm busy organising delivery of a light portable system now, in time

for the

> hubby & I going off for 2 weeks winter sojourn at a quiet beach with

ocean

> on one side & river views on the other.the Sistas are coming with us &

we

> plan lots of beach walks..deep sea fishing & the eating of Oysters

from the

> pristine estuary that has no farming/people activity upstream.

>

> I'm getting the Airsep 'Freestyle' Portable Concentrator (back-pack

style)

> with the option to 'Trade-up' to a higher Pulse system further down

the

> track. This way I can travel whenever & wherever I want around Oz &

the

> Pacific without having to hassle about getting O2 cylinders delivered

to

> very isolated places (I LOVE isolated places!). They're approved for

use on

> all the planes I'd be using & I can have the flexibility of knowing

that the

> O2 capability travels with me.

>

> So here's to safer exertion for ME!

>

> HOORAY!

>

>

>

> in Oz

>

> IPF: Fibrotic NSIP/UIP ??

> Reynauds'

> May 2007

>

[Guest guest]

Hi to you Peggy E...I've just caught up with the fact that we have a 2nd 'Peggy' on the Board...I've dubbed our other one as Princess Hee Hee ('cos she often gives us a 'blondie giggle'..) she also gets the title of HRH 'cos she's a 'National Treasure'...

For now, you get 'Peggy E' it seems.....that'll keep the pair of you sorted for the time being!

You & I seem pretty similar in our capacity for action....I've done one long-haul flight (a few months after my diganosis in 07)...I was advised to do so sooner rather than later since progression is impossible to predict with this .mysterious disease.

My sats are good when sitting (around 96/97)..not too bad when walking on the flat (90/92) but anymore exertion than that & they drop markedly ( & my heart rate jumps too)...however they do bounce back fairly quickly..!

One problem with OS travel is that Insurance is impossible to cover the PF....that makes it a risky enterprise since Australia is so far from where I like to visit. I'm not sure I could take the risk again a few years down the track. I'm game to fly around the Pacific Region but that's about it! Mind you my hubby is talking about a trip to Scotland next year & I'll be sooooooo jealous I might just ignore my fears....what the heck....I could do worse than getting stuck in Scotland...I'm sure Bonnie May would visit me wherever I got hauled to for treatment!!!! HA!

Look, a lot of the 'business' of dealing with this PF is to work out where you are in relation to the 'severe stage'....you & I are still way off that, unless disaster strikes, & that can happen to anyone who's perfectly well at this point! Don't jump the gun so to speak.....think of 'CAN Do' even if there are a few 'adjustments'!

But DO get an oximeter & learn what is going on for yourself. Using the oximeter was partly what got me going again after I'd been very sick & after the lung biopsy etc....

Now, with the bonus of the Portable O2 on my back I intend to be unstoppable...if I'd had that during my holdiay on Norfolk Island last October I would've been able to accompany my hubby down the steep paths to all the exciting little beaches below. Instead I had to sit up on top of the cliff watching him have all the fun!

O2 is our FRIEND....

Mind you I'm not sure about Tennis & an O2 tank bouncing around together!

I haven't tried to play Tennis lately but that is more because my blinkin' 'progressive lens specs' makes it too difficult to FOCUS on that speedy little ball with its ever-changing trajectory!

Cheers,

GIO ( in Oz)

IPF: Fibrotic NSIP/UIP???

Raynaud's

May 2007

Ro52

May 2008

> >> > > > > > Latest news on moi is that I've just finished my PF Review & things seem> > pretty stable. Having said that a major 'miracle' has occurred .. I managed> > to 'get through' to my Respiratory Specialist regarding my falling Sats when> > I'm being 'active'..I do suspect that my Pulmonary Rehab Nurse has been> > talking to him about my situation. It was a totally different response to> > last year when I'd already broached the subject of O2 & how the 6 minute> > walk test was no indicator of the reality of my daily life.> > > > At long last he asked if I'd ever had a 24 hour 'activity' Test (well> > NO.'cos he'd never organised it or even previously mentioned the existence> > of such a thing!) I told him I had my own oximeter & that it was falling to> > 85 when I was doing my usual stuff like gardening, climbing up n' down> > ladders changing lights.chasing the Sistas, housework of all descriptions,> > bush walking, gym capers.etc etc.> > > > Aaaah he responded, well we'd better organise some O2 for you..I nearly> > dropped off the chair in surprise..> > > > Interestingly I felt a great WEIGHT lifted at the same time.I realised I've> > been quite stressed about this O2 business..knowing the implication of> > plunging O2 but being unwilling to stop being ME! The reality is that I> > probably should've been on 'exertion O2' right from when I was first> > diagnosed. ah well better late than never!> > > > Last year when I had my Review I asked the Doc how would HE would know when> > I'd need O2..he said the Pulmo Rehab Nurse would advise him! Soooooo a few> > months back I decided to send material on the subject through to my> > Pulmonary Rehab Nurse to educate HER on PF & O2 therapy.I also sent her an> > e-mail setting out just what was going on for me with the oximeter & how> > puzzled I was that O2 wasn't being suggested. Until then she'd kept saying> > 'oh no, not yet!' After my 'education' process she changed her tune to> > wondering herself why it took so long for PF patients to be put on O2! > > > > As the Respiratory Physician explained there is no subsidy for O2 in Oz,> > until a patient's Sats fall below 90 SITTING! That is the criteria they've> > all been using..I told him I'm quite prepared to pay for my own well being & > > sense of being free to live my normal life.> > > > I'm busy organising delivery of a light portable system now, in time for the> > hubby & I going off for 2 weeks winter sojourn at a quiet beach with ocean> > on one side & river views on the other.the Sistas are coming with us & we> > plan lots of beach walks..deep sea fishing & the eating of Oysters from the> > pristine estuary that has no farming/people activity upstream. > > > > I'm getting the Airsep 'Freestyle' Portable Concentrator (back-pack style)> > with the option to 'Trade-up' to a higher Pulse system further down the> > track. This way I can travel whenever & wherever I want around Oz & the> > Pacific without having to hassle about getting O2 cylinders delivered to> > very isolated places (I LOVE isolated places!). They're approved for use on> > all the planes I'd be using & I can have the flexibility of knowing that the> > O2 capability travels with me.> > > > So here's to safer exertion for ME!> > > > HOORAY!> > > > > > > > in Oz > > > > IPF: Fibrotic NSIP/UIP ??> > Reynauds' > > May 2007> >>

[Guest guest]

Hi ,

So if Peggy C is HRH and Princess Hee Hee - I can't wait to see what you dub me!

Yes, I will/do think of " can do " . I am already thinking of what I shouldn't do

though as I do want to have a higher quality of life and not just throw what I

have away with reckless behavior. I won't deal with smoke, dust, and wear a

mask whenever I have to do anything with anything airborne. I am sure the

neighbors wonder what kind of freak and what weird disease I must be contagious

as I shake rugs with my white mask on.

It is nice to know that O2 can make such a difference that you can hike, bike

etc. using it. My husband once played tennis against a guy who had an O2 tank

on the side of the court and after a point would go over and take some inhales

of it. My poor husband was only in his 30's at the time and he thought the guy

was going to croak on him during the match. My husband nearly lost to this guy

because he couldn't focus on the tennis. The old guy probably didn't even have

a lung condition but learned he could get someone so unfocused. . . just kidding

about that last part but it is humorous to think that. I will play as long as I

can play but when it is time I have other things I'd like to do like sail, bike,

walk, travel, finish my photo albums, garden and do more art quilting so life is

full of fun activities - never short of ideas.

This group has already made me much more relaxed about this challenge I am a

part of. We all will have something eventually and I have already gone through

something that would have killed me when I was 21 had I been 21, 20 years

earlier so death doesn't scare me although I am not jumping to do that just yet

either.

Got to get to bed now - big tests tomorrow including a Chest CT - the biggest of

the big ones! right?

Cheers,

Peggy E (wife, mother, quilter, tennis player, ILD 2007, 53 yo) Can't be defined

by only a disease and age - really now!

> > >

> > >

> > >

> > > Latest news on moi is that I've just finished my PF Review & things

> seem

> > > pretty stable. Having said that a major 'miracle' has occurred .. I

> managed

> > > to 'get through' to my Respiratory Specialist regarding my falling

> Sats when

> > > I'm being 'active'..I do suspect that my Pulmonary Rehab Nurse has

> been

> > > talking to him about my situation. It was a totally different

> response to

> > > last year when I'd already broached the subject of O2 & how the 6

> minute

> > > walk test was no indicator of the reality of my daily life.

> > >

> > > At long last he asked if I'd ever had a 24 hour 'activity' Test

> (well

> > > NO.'cos he'd never organised it or even previously mentioned the

> existence

> > > of such a thing!) I told him I had my own oximeter & that it was

> falling to

> > > 85 when I was doing my usual stuff like gardening, climbing up n'

> down

> > > ladders changing lights.chasing the Sistas, housework of all

> descriptions,

> > > bush walking, gym capers.etc etc.

> > >

> > > Aaaah he responded, well we'd better organise some O2 for you..I

> nearly

> > > dropped off the chair in surprise..

> > >

> > > Interestingly I felt a great WEIGHT lifted at the same time.I

> realised I've

> > > been quite stressed about this O2 business..knowing the implication

> of

> > > plunging O2 but being unwilling to stop being ME! The reality is

> that I

> > > probably should've been on 'exertion O2' right from when I was first

> > > diagnosed. ah well better late than never!

> > >

> > > Last year when I had my Review I asked the Doc how would HE would

> know when

> > > I'd need O2..he said the Pulmo Rehab Nurse would advise him! Soooooo

> a few

> > > months back I decided to send material on the subject through to my

> > > Pulmonary Rehab Nurse to educate HER on PF & O2 therapy.I also sent

> her an

> > > e-mail setting out just what was going on for me with the oximeter &

> how

> > > puzzled I was that O2 wasn't being suggested. Until then she'd kept

> saying

> > > 'oh no, not yet!' After my 'education' process she changed her tune

> to

> > > wondering herself why it took so long for PF patients to be put on

> O2!

> > >

> > > As the Respiratory Physician explained there is no subsidy for O2 in

> Oz,

> > > until a patient's Sats fall below 90 SITTING! That is the criteria

> they've

> > > all been using..I told him I'm quite prepared to pay for my own well

> being &

> > > sense of being free to live my normal life.

> > >

> > > I'm busy organising delivery of a light portable system now, in time

> for the

> > > hubby & I going off for 2 weeks winter sojourn at a quiet beach with

> ocean

> > > on one side & river views on the other.the Sistas are coming with us

> & we

> > > plan lots of beach walks..deep sea fishing & the eating of Oysters

> from the

> > > pristine estuary that has no farming/people activity upstream.

> > >

> > > I'm getting the Airsep 'Freestyle' Portable Concentrator (back-pack

> style)

> > > with the option to 'Trade-up' to a higher Pulse system further down

> the

> > > track. This way I can travel whenever & wherever I want around Oz &

> the

> > > Pacific without having to hassle about getting O2 cylinders

> delivered to

> > > very isolated places (I LOVE isolated places!). They're approved for

> use on

> > > all the planes I'd be using & I can have the flexibility of knowing

> that the

> > > O2 capability travels with me.

> > >

> > > So here's to safer exertion for ME!

> > >

> > > HOORAY!

> > >

> > >

> > >

> > > in Oz

> > >

> > > IPF: Fibrotic NSIP/UIP ??

> > > Reynauds'

> > > May 2007

> > >

> >

>

[Guest guest]

... you sound so organized! good for you,

keep on keepin' on and enjoy!

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

's Review

Latest news on moi is that I’ve just finished my PF Review & things seem pretty stable. Having said that a major ‘miracle’ has occurred …. I managed to ‘get through’ to my Respiratory Specialist regarding my falling Sats when I’m being ‘active’….I do suspect that my Pulmonary Rehab Nurse has been talking to him about my situation. It was a totally different response to last year when I’d already broached the subject of O2 & how the 6 minute walk test was no indicator of the reality of my daily life

[Guest guest]

,

I was just thinking we hadn't heard from you in a while. Sounds like

you have all the docs whipped into shape! As you sit and watch the

ocean Please have a cold one for me, I know I will feel it in my heart.

Have a wonderful time.

Dyane Phoenix, IPF 02

>

>

>

> Latest news on moi is that I've just finished my PF Review & things

seem

> pretty stable. Having said that a major 'miracle' has occurred .. I

managed

> to 'get through' to my Respiratory Specialist regarding my falling

Sats when

> I'm being 'active'..I do suspect that my Pulmonary Rehab Nurse has

been

> talking to him about my situation. It was a totally different response

to

> last year when I'd already broached the subject of O2 & how the 6

minute

> walk test was no indicator of the reality of my daily life.

>

> At long last he asked if I'd ever had a 24 hour 'activity' Test (well

> NO.'cos he'd never organised it or even previously mentioned the

existence

> of such a thing!) I told him I had my own oximeter & that it was

falling to

> 85 when I was doing my usual stuff like gardening, climbing up n' down

> ladders changing lights.chasing the Sistas, housework of all

descriptions,

> bush walking, gym capers.etc etc.

>

> Aaaah he responded, well we'd better organise some O2 for you..I

nearly

> dropped off the chair in surprise..

>

> Interestingly I felt a great WEIGHT lifted at the same time.I realised

I've

> been quite stressed about this O2 business..knowing the implication of

> plunging O2 but being unwilling to stop being ME! The reality is that

I

> probably should've been on 'exertion O2' right from when I was first

> diagnosed. ah well better late than never!

>

> Last year when I had my Review I asked the Doc how would HE would know

when

> I'd need O2..he said the Pulmo Rehab Nurse would advise him! Soooooo

a few

> months back I decided to send material on the subject through to my

> Pulmonary Rehab Nurse to educate HER on PF & O2 therapy.I also sent

her an

> e-mail setting out just what was going on for me with the oximeter &

how

> puzzled I was that O2 wasn't being suggested. Until then she'd kept

saying

> 'oh no, not yet!' After my 'education' process she changed her tune to

> wondering herself why it took so long for PF patients to be put on O2!

>

> As the Respiratory Physician explained there is no subsidy for O2 in

Oz,

> until a patient's Sats fall below 90 SITTING! That is the criteria

they've

> all been using..I told him I'm quite prepared to pay for my own well

being &

> sense of being free to live my normal life.

>

> I'm busy organising delivery of a light portable system now, in time

for the

> hubby & I going off for 2 weeks winter sojourn at a quiet beach with

ocean

> on one side & river views on the other.the Sistas are coming with us &

we

> plan lots of beach walks..deep sea fishing & the eating of Oysters

from the

> pristine estuary that has no farming/people activity upstream.

>

> I'm getting the Airsep 'Freestyle' Portable Concentrator (back-pack

style)

> with the option to 'Trade-up' to a higher Pulse system further down

the

> track. This way I can travel whenever & wherever I want around Oz &

the

> Pacific without having to hassle about getting O2 cylinders delivered

to

> very isolated places (I LOVE isolated places!). They're approved for

use on

> all the planes I'd be using & I can have the flexibility of knowing

that the

> O2 capability travels with me.

>

> So here's to safer exertion for ME!

>

> HOORAY!

>

>

>

> in Oz

>

> IPF: Fibrotic NSIP/UIP ??

> Reynauds'

> May 2007

>

[Guest guest]

, I am always amazed that a MD can actually be so stupid and uncaring..  Thank heavens you have your oximeter.BUT.. Please don't let your sat drop that low. I think you need to just smack him.. Is the Airsep going to be your only source of 02? I hope you have ordered extra batteries just in case.. LOL Can't have our Sista's momma light headed. Take CARE of you. Love and Prayers, Peggy   IPF  2004,  FloridaWorry looks around, Sorry looks back,  Faith looks up. <image001.gif>Latest news on moi is that I’ve just finished my PF Review & things seem pretty stable. Having said that a major ‘miracle’ has occurred …. I managed to ‘get through’ to my Respiratory Specialist regarding my falling Sats when I’m being ‘active’….I do suspect that my Pulmonary Rehab Nurse has been talking to him about my situation. It was a totally different response to last year when I’d already broached the subject of O2 & how the 6 minute walk test was no indicator of the reality of my daily life.At long last he asked if I’d ever had a 24 hour ‘activity’ Test (well NO…’cos he’d never organised it or even previously mentioned the existence of such a thing!) I told him I had my own oximeter & that it was falling to 85 when I was doing my usual stuff like gardening, climbing up n’ down ladders changing lights…chasing the Sistas, housework of all descriptions, bush walking, gym capers…etc etc…Aaaah he responded, well we’d better organise some O2 for you……I nearly dropped off the chair in surprise….Interestingly I felt a great WEIGHT lifted at the same time…I realised I’ve been quite stressed about this O2 business..knowing the implication of plunging O2 but being unwilling to stop being ME! The reality is that I probably should’ve been on ‘exertion O2’ right from when I was first diagnosed… ah well better late than never!Last year when I had my Review I asked the Doc how would HE would know when I’d need O2..he said the Pulmo Rehab Nurse would advise him! Soooooo  a few months back I decided to send material on the subject through to my Pulmonary Rehab Nurse to educate HER on PF & O2 therapy.I also sent her an e-mail setting out just what was going on for me with the oximeter & how puzzled I was that O2 wasn’t being suggested. Until then she’d kept saying ‘oh no, not yet!’ After my ‘education’ process she changed her tune to wondering herself why it took so long for PF patients to be put on O2!As the Respiratory Physician explained there is no subsidy for O2 in Oz, until a patient’s Sats fall below 90 SITTING! That is the criteria they’ve all been using……I told him I’m quite prepared to pay for my own well being & sense of being free to live my normal life…I’m busy organising delivery of a light portable system now, in time for the hubby & I going off for 2 weeks winter sojourn at a quiet beach with ocean on one side & river views on the other…the Sistas are coming with us & we plan lots of beach walks..deep sea fishing & the eating of Oysters from the pristine estuary that has no farming/people activity upstream.I’m getting the Airsep ‘Freestyle’ Portable Concentrator (back-pack style) with the option to ‘Trade-up’ to a higher Pulse system further down the track. This way I can travel whenever & wherever I want around Oz & the Pacific without having to hassle about getting O2 cylinders delivered to very isolated places (I LOVE isolated places!). They’re approved for use on all the planes I’d be using & I can have the flexibility of knowing that the O2 capability travels with me.So here’s to safer exertion for ME!HOORAY!  in Oz                    <image003.jpg>IPF: Fibrotic NSIP/UIP ??Reynauds'                  May 2007  

[Guest guest]

Dear HRH don't you wurrie 'bout this Scilly gal...she's an Amazon don't ya know!

For the time being I'll be using the Freestyle Airsep without the extra batteries. At the rate I'll be using it there'll be plenty of battery time. When that changes I'll get the wrap around extra battery belt. I figured that unused batteries lying around only go 'stale' so I'll wait until I feel the need for the extra time.

As I progress I'll change my arrangements but right now I see myself as being up for some ACTION & the 'Freestyle' fits the Bill perfectly. My legs n' arms work like a charm....it's only the dodgy lungs that won't keep up! I'll be on a steep learning curve....lots of love to you Princess HH

SGIO

> > > > <image001.gif>> > Latest news on moi is that I’ve just finished my PF Review & things > seem pretty stable. Having said that a major ‘miracle’ has > occurred …. I managed to ‘get through’ to my Respiratory > Specialist regarding my falling Sats when I’m being > ‘active’….I do suspect that my Pulmonary Rehab Nurse has been > talking to him about my situation. It was a totally different > response to last year when I’d already broached the subject of O2 & > how the 6 minute walk test was no indicator of the reality of my > daily life.> > At long last he asked if I’d ever had a 24 hour ‘activity’ Test > (well NO…’cos he’d never organised it or even previously > mentioned the existence of such a thing!) I told him I had my own > oximeter & that it was falling to 85 when I was doing my usual stuff > like gardening, climbing up n’ down ladders changing lights… > chasing the Sistas, housework of all descriptions, bush walking, gym > capers…etc etc…> > Aaaah he responded, well we’d better organise some O2 for you……I > nearly dropped off the chair in surprise….> > Interestingly I felt a great WEIGHT lifted at the same time…I > realised I’ve been quite stressed about this O2 business..knowing > the implication of plunging O2 but being unwilling to stop being ME! > The reality is that I probably should’ve been on ‘exertion O2’ > right from when I was first diagnosed… ah well better late than never!> > Last year when I had my Review I asked the Doc how would HE would > know when I’d need O2..he said the Pulmo Rehab Nurse would advise > him! Soooooo a few months back I decided to send material on the > subject through to my Pulmonary Rehab Nurse to educate HER on PF & O2 > therapy.I also sent her an e-mail setting out just what was going on > for me with the oximeter & how puzzled I was that O2 wasn’t being > suggested. Until then she’d kept saying ‘oh no, not yet!’ After > my ‘education’ process she changed her tune to wondering herself > why it took so long for PF patients to be put on O2!> > As the Respiratory Physician explained there is no subsidy for O2 in > Oz, until a patient’s Sats fall below 90 SITTING! That is the > criteria they’ve all been using……I told him I’m quite prepared > to pay for my own well being & sense of being free to live my normal > life…> > I’m busy organising delivery of a light portable system now, in time > for the hubby & I going off for 2 weeks winter sojourn at a quiet > beach with ocean on one side & river views on the other…the Sistas > are coming with us & we plan lots of beach walks..deep sea fishing & > the eating of Oysters from the pristine estuary that has no farming/ > people activity upstream.> > I’m getting the Airsep ‘Freestyle’ Portable Concentrator (back- > pack style) with the option to ‘Trade-up’ to a higher Pulse system > further down the track. This way I can travel whenever & wherever I > want around Oz & the Pacific without having to hassle about getting > O2 cylinders delivered to very isolated places (I LOVE isolated > places!). They’re approved for use on all the planes I’d be using > & I can have the flexibility of knowing that the O2 capability > travels with me.> > So here’s to safer exertion for ME!> > HOORAY!> > > > in Oz> <image003.jpg>> IPF: Fibrotic NSIP/UIP ??> Reynauds'> May 2007>

[Guest guest]

Madam Lash that's me! When I'm not being Scilly of course...Amazon's make natural Madam Lashes!!!!!!!!!!

Thanks for your good wishes..I'll certainly drop a fresh white one in your honour ...or a Shandy mebbe..very partial to a Stout n' Lemonade I am!

Cheers,

SGIO> >> >> >> > Latest news on moi is that I've just finished my PF Review & things> seem> > pretty stable. Having said that a major 'miracle' has occurred .. I> managed> > to 'get through' to my Respiratory Specialist regarding my falling> Sats when> > I'm being 'active'..I do suspect that my Pulmonary Rehab Nurse has> been> > talking to him about my situation. It was a totally different response> to> > last year when I'd already broached the subject of O2 & how the 6> minute> > walk test was no indicator of the reality of my daily life.> >> > At long last he asked if I'd ever had a 24 hour 'activity' Test (well> > NO.'cos he'd never organised it or even previously mentioned the> existence> > of such a thing!) I told him I had my own oximeter & that it was> falling to> > 85 when I was doing my usual stuff like gardening, climbing up n' down> > ladders changing lights.chasing the Sistas, housework of all> descriptions,> > bush walking, gym capers.etc etc.> >> > Aaaah he responded, well we'd better organise some O2 for you..I> nearly> > dropped off the chair in surprise..> >> > Interestingly I felt a great WEIGHT lifted at the same time.I realised> I've> > been quite stressed about this O2 business..knowing the implication of> > plunging O2 but being unwilling to stop being ME! The reality is that> I> > probably should've been on 'exertion O2' right from when I was first> > diagnosed. ah well better late than never!> >> > Last year when I had my Review I asked the Doc how would HE would know> when> > I'd need O2..he said the Pulmo Rehab Nurse would advise him! Soooooo > a few> > months back I decided to send material on the subject through to my> > Pulmonary Rehab Nurse to educate HER on PF & O2 therapy.I also sent> her an> > e-mail setting out just what was going on for me with the oximeter & > how> > puzzled I was that O2 wasn't being suggested. Until then she'd kept> saying> > 'oh no, not yet!' After my 'education' process she changed her tune to> > wondering herself why it took so long for PF patients to be put on O2!> >> > As the Respiratory Physician explained there is no subsidy for O2 in> Oz,> > until a patient's Sats fall below 90 SITTING! That is the criteria> they've> > all been using..I told him I'm quite prepared to pay for my own well> being & > > sense of being free to live my normal life.> >> > I'm busy organising delivery of a light portable system now, in time> for the> > hubby & I going off for 2 weeks winter sojourn at a quiet beach with> ocean> > on one side & river views on the other.the Sistas are coming with us & > we> > plan lots of beach walks..deep sea fishing & the eating of Oysters> from the> > pristine estuary that has no farming/people activity upstream.> >> > I'm getting the Airsep 'Freestyle' Portable Concentrator (back-pack> style)> > with the option to 'Trade-up' to a higher Pulse system further down> the> > track. This way I can travel whenever & wherever I want around Oz & > the> > Pacific without having to hassle about getting O2 cylinders delivered> to> > very isolated places (I LOVE isolated places!). They're approved for> use on> > all the planes I'd be using & I can have the flexibility of knowing> that the> > O2 capability travels with me.> >> > So here's to safer exertion for ME!> >> > HOORAY!> >> >> >> > in Oz> >> > IPF: Fibrotic NSIP/UIP ??> > Reynauds'> > May 2007> >>

[Guest guest]

Adrienne,

I've ordered the AIrsep 'Freestyle' portable Oxygen Concentrator 1-3 pulse rate. It's the lightest concentrator on the market....battery time is only 2-31/2 hours but can be extended if you buy the optional 'battery belt'...I think that gets you up to 5-10 hours (it all depends on your pulse flow rate.) It can also be plugged into a car battery or an power point.

A compressed O2 'B' cylinder is actually lighter & well get you better time if you use it with a OCD (Oxygen Conserving Device which delivers O2 on breath intake only). These are also a lot cheaper to use BUT you have to muck around with geting O2 delivered...if you travel a lot like I do then it can be a hassle...especially if you keep wanting to go to isolated places like I always seem to want to do!

Got to race out the door...talk again later..look it up via Mr Google..

Cheers,

GIO

> > >> > > > > > > > > Latest news on moi is that I've just finished my PF Review & things seem> > > pretty stable. Having said that a major 'miracle' has occurred .. I managed> > > to 'get through' to my Respiratory Specialist regarding my falling Sats when> > > I'm being 'active'..I do suspect that my Pulmonary Rehab Nurse has been> > > talking to him about my situation. It was a totally different response to> > > last year when I'd already broached the subject of O2 & how the 6 minute> > > walk test was no indicator of the reality of my daily life.> > > > > > At long last he asked if I'd ever had a 24 hour 'activity' Test (well> > > NO.'cos he'd never organised it or even previously mentioned the existence> > > of such a thing!) I told him I had my own oximeter & that it was falling to> > > 85 when I was doing my usual stuff like gardening, climbing up n' down> > > ladders changing lights.chasing the Sistas, housework of all descriptions,> > > bush walking, gym capers.etc etc.> > > > > > Aaaah he responded, well we'd better organise some O2 for you..I nearly> > > dropped off the chair in surprise..> > > > > > Interestingly I felt a great WEIGHT lifted at the same time.I realised I've> > > been quite stressed about this O2 business..knowing the implication of> > > plunging O2 but being unwilling to stop being ME! The reality is that I> > > probably should've been on 'exertion O2' right from when I was first> > > diagnosed. ah well better late than never!> > > > > > Last year when I had my Review I asked the Doc how would HE would know when> > > I'd need O2..he said the Pulmo Rehab Nurse would advise him! Soooooo a few> > > months back I decided to send material on the subject through to my> > > Pulmonary Rehab Nurse to educate HER on PF & O2 therapy.I also sent her an> > > e-mail setting out just what was going on for me with the oximeter & how> > > puzzled I was that O2 wasn't being suggested. Until then she'd kept saying> > > 'oh no, not yet!' After my 'education' process she changed her tune to> > > wondering herself why it took so long for PF patients to be put on O2! > > > > > > As the Respiratory Physician explained there is no subsidy for O2 in Oz,> > > until a patient's Sats fall below 90 SITTING! That is the criteria they've> > > all been using..I told him I'm quite prepared to pay for my own well being & > > > sense of being free to live my normal life.> > > > > > I'm busy organising delivery of a light portable system now, in time for the> > > hubby & I going off for 2 weeks winter sojourn at a quiet beach with ocean> > > on one side & river views on the other.the Sistas are coming with us & we> > > plan lots of beach walks..deep sea fishing & the eating of Oysters from the> > > pristine estuary that has no farming/people activity upstream. > > > > > > I'm getting the Airsep 'Freestyle' Portable Concentrator (back-pack style)> > > with the option to 'Trade-up' to a higher Pulse system further down the> > > track. This way I can travel whenever & wherever I want around Oz & the> > > Pacific without having to hassle about getting O2 cylinders delivered to> > > very isolated places (I LOVE isolated places!). They're approved for use on> > > all the planes I'd be using & I can have the flexibility of knowing that the> > > O2 capability travels with me.> > > > > > So here's to safer exertion for ME!> > > > > > HOORAY!> > > > > > > > > > > > in Oz > > > > > > IPF: Fibrotic NSIP/UIP ??> > > Reynauds' > > > May 2007> > >> >>

[Guest guest]

Hi !

I am glad to hear that you are in the "STABLES" I am a little behind on reading all of these posts because of Farm Town on FB. It is so addicting!

I thought it interesting that your use of oxygen is based on your levels when sitting. That happened to me once before I found this group. I had been hospitalized because of ARDS for six months., having to learn how to walk, eat, etc. My sat when I was in the bed and could not get up was 100%. Well when I was transferred to a REhab hospital near my home town, my oxygen was set on 1 liter. It was horrible and they would not even turn it up ever. I finally got them to check my sats later after I had started walking with the walker and I would have to sit down and rest for 20 minutes. Later I had outpatient therapy and I dared to turn up the oxygen the therapist asked me why: I told him that I was tired of being out of breath. No one really understands our need for oxygen and to turn it up when we are active. At home I never know when I am going to suddenly jump up and do something so I just keep mine on 3 liters. OH well, I hope the sistas are doing welll and not wearing you out too muuch!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> > > Latest news on moi is that I've just finished my PF Review & things seem> pretty stable. Having said that a major 'miracle' has occurred .. I managed> to 'get through' to my Respiratory Specialist regarding my falling Sats when> I'm being 'active'..I do suspect that my Pulmonary Rehab Nurse has been> talking to him about my situation. It was a totally different response to> last year when I'd already broached the subject of O2 & how the 6 minute> walk test was no indicator of the reality of my daily life.> > At long last he asked if I'd ever had a 24 hour 'activity' Test (well> NO.'cos he'd never organised it or even previously mentioned the existence> of such a thing!) I told him I had my own oximeter & that it was falling to> 85 when I was doing my usual stuff like gardening, climbing up n' down> ladders changing lights.chasing the Sistas, housework of all descriptions,> bush walking, gym capers.etc etc.> > Aaaah he responded, well we'd better organise some O2 for you..I nearly> dropped off the chair in surprise..> > Interestingly I felt a great WEIGHT lifted at the same time.I realised I've> been quite stressed about this O2 business..knowing the implication of> plunging O2 but being unwilling to stop being ME! The reality is that I> probably should've been on 'exertion O2' right from when I was first> diagnosed. ah well better late than never!> > Last year when I had my Review I asked the Doc how would HE would know when> I'd need O2..he said the Pulmo Rehab Nurse would advise him! Soooooo a few> months back I decided to send material on the subject through to my> Pulmonary Rehab Nurse to educate HER on PF & O2 therapy.I also sent her an> e-mail setting out just what was going on for me with the oximeter & how> puzzled I was that O2 wasn't being suggested. Until then she'd kept saying> 'oh no, not yet!' After my 'education' process she changed her tune to> wondering herself why it took so long for PF patients to be put on O2! > > As the Respiratory Physician explained there is no subsidy for O2 in Oz,> until a patient's Sats fall below 90 SITTING! That is the criteria they've> all been using..I told him I'm quite prepared to pay for my own well being & > sense of being free to live my normal life.> > I'm busy organising delivery of a light portable system now, in time for the> hubby & I going off for 2 weeks winter sojourn at a quiet beach with ocean> on one side & river views on the other.the Sistas are coming with us & we> plan lots of beach walks..deep sea fishing & the eating of Oysters from the> pristine estuary that has no farming/people activity upstream. > > I'm getting the Airsep 'Freestyle' Portable Concentrator (back-pack style)> with the option to 'Trade-up' to a higher Pulse system further down the> track. This way I can travel whenever & wherever I want around Oz & the> Pacific without having to hassle about getting O2 cylinders delivered to> very isolated places (I LOVE isolated places!). They're approved for use on> all the planes I'd be using & I can have the flexibility of knowing that the> O2 capability travels with me.> > So here's to safer exertion for ME!> > HOORAY!> > > > in Oz > > IPF: Fibrotic NSIP/UIP ??> Reynauds' > May 2007>

[Guest guest]

Thanks for the info. I'll follow up on your suggestions.

Adrienne

Subject: Re: 's ReviewTo: Breathe-Support Date: Friday, June 12, 2009, 12:45 AM

Adrienne,

I've ordered the AIrsep 'Freestyle' portable Oxygen Concentrator 1-3 pulse rate. It's the lightest concentrator on the market....battery time is only 2-31/2 hours but can be extended if you buy the optional 'battery belt'...I think that gets you up to 5-10 hours (it all depends on your pulse flow rate.) It can also be plugged into a car battery or an power point.

A compressed O2 'B' cylinder is actually lighter & well get you better time if you use it with a OCD (Oxygen Conserving Device which delivers O2 on breath intake only). These are also a lot cheaper to use BUT you have to muck around with geting O2 delivered... if you travel a lot like I do then it can be a hassle...especially if you keep wanting to go to isolated places like I always seem to want to do!

Got to race out the door...talk again later..look it up via Mr Google..

Cheers,

GIO

> > >> > > > > > > > > Latest news on moi is that I've just finished my PF Review & things seem> > > pretty stable. Having said that a major 'miracle' has occurred .. I managed> > > to 'get through' to my Respiratory Specialist regarding my falling Sats when> > > I'm being 'active'..I do suspect that my Pulmonary Rehab Nurse has been> > > talking to him about my situation. It was a totally different response to> > > last year when I'd already broached the subject of O2 & how the 6 minute> > > walk test was no indicator of the reality of my daily life.> > > > > > At long last he asked if I'd ever had a 24 hour 'activity' Test (well> > > NO.'cos he'd never organised it or even previously mentioned the

existence> > > of such a thing!) I told him I had my own oximeter & that it was falling to> > > 85 when I was doing my usual stuff like gardening, climbing up n' down> > > ladders changing lights.chasing the Sistas, housework of all descriptions,> > > bush walking, gym capers.etc etc.> > > > > > Aaaah he responded, well we'd better organise some O2 for you..I nearly> > > dropped off the chair in surprise..> > > > > > Interestingly I felt a great WEIGHT lifted at the same time.I realised I've> > > been quite stressed about this O2 business..knowing the implication of> > > plunging O2 but being unwilling to stop being ME! The reality is that I> > > probably should've been on 'exertion O2' right from when I was first> > > diagnosed. ah well better late than never!> > >

> > > Last year when I had my Review I asked the Doc how would HE would know when> > > I'd need O2..he said the Pulmo Rehab Nurse would advise him! Soooooo a few> > > months back I decided to send material on the subject through to my> > > Pulmonary Rehab Nurse to educate HER on PF & O2 therapy.I also sent her an> > > e-mail setting out just what was going on for me with the oximeter & how> > > puzzled I was that O2 wasn't being suggested. Until then she'd kept saying> > > 'oh no, not yet!' After my 'education' process she changed her tune to> > > wondering herself why it took so long for PF patients to be put on O2! > > > > > > As the Respiratory Physician explained there is no subsidy for O2 in Oz,> > > until a patient's Sats fall below 90 SITTING! That is the criteria they've> > > all been

using..I told him I'm quite prepared to pay for my own well being & > > > sense of being free to live my normal life.> > > > > > I'm busy organising delivery of a light portable system now, in time for the> > > hubby & I going off for 2 weeks winter sojourn at a quiet beach with ocean> > > on one side & river views on the other.the Sistas are coming with us & we> > > plan lots of beach walks..deep sea fishing & the eating of Oysters from the> > > pristine estuary that has no farming/people activity upstream. > > > > > > I'm getting the Airsep 'Freestyle' Portable Concentrator (back-pack style)> > > with the option to 'Trade-up' to a higher Pulse system further down the> > > track. This way I can travel whenever & wherever I want around Oz & the> > > Pacific without having

to hassle about getting O2 cylinders delivered to> > > very isolated places (I LOVE isolated places!). They're approved for use on> > > all the planes I'd be using & I can have the flexibility of knowing that the> > > O2 capability travels with me.> > > > > > So here's to safer exertion for ME!> > > > > > HOORAY!> > > > > > > > > > > > in Oz > > > > > > IPF: Fibrotic NSIP/UIP ??> > > Reynauds' > > > May 2007> > >> >>