Re: 's Review

[Guest guest]

Hi ,

Thanks for sharing that. I'm happy to hear the joy in your voice and I learned

'yet again' how important it is for us all to be advocates for our own health.

I hadn't even thought of watching my O2 levels periodically though out the day

and noting them. I will bring this up with my pulmonologist on my next visit.

I had a time at the very beginning when I was quite acute that my sats dropped

to 82 on a treadmill test and yet I felt pretty fine. The test was after I had

'recovered' from a couple months prior when I would get dizzy to the point of

nearly passing out and seeing stars and the whole 9 yards. Wonder what my sats

were then?! Later after treatment and more natural healing my sats have only

dropped a few % points so I am hoping I am still in the 90's even with exercise.

Enjoy your vacation - I am encouraged to hear that I might be able to do some

trips yet that I've dreamed about my entire life!

Peggy Ellis ILD 2007, 53 yo Bellevue, WA

>

>

>

> 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]

,

This is very good news I think! I know you've been feeling like you probably need O2 for most kinds of exertion for quite some time now so this has to take such a burden of anxiety from your shoulders.

The O2 is not a step that anyone wants to have to take but I think you'll be surprised how much better you'll feel and how much more energy you'll probably have once you are using it regularly.

Hugs,

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support ; pulmonaryfibrosis Sent: Wednesday, June 10, 2009 10:43:17 PMSubject: '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.

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