Guest guest Posted June 11, 2009 Report Share Posted June 11, 2009 , What is the portable O2 that you use? It sounds like it is good for more than a few hours, which is what I'm looking for. Thank you. Subject: Re: 's ReviewTo: Breathe-Support Date: Thursday, June 11, 2009, 5:33 AM 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> >> Quote Link to comment Share on other sites More sharing options...
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