Jane's Farm & the Stables

[Guest guest]

Now Farmer Jane I hope you've got the Horses in your cyberspace Farm Stable 'appropriately' named in our honour!

Neeeeeeigh.....

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> >>