's Review

[Guest guest]

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