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15 Jun, 2010 - 6:49 pm

Hello all

As you might have guessed I am an English sufferer (but I live in Wales - long story). I am a chronic sufferer‚ suffered episodic all my life undiagnosed until I became chronic nine years ago. Have had an ONSI fitted and there has been a great improvement‚ but its not a cure and I still have attacks.

my reason for joining you all is that I am coming to Australia in November to visit my daughter in Sydney and I need to source an oxygen supply. can you guys fill me in on what I need to do and if I need to bring/produce anything from my British neuro/GP. BTW my neuro is the great and much respected Professor Peter Goadsby - I am a member of OUCH (UK) the Brit organisation for sufferers and he is our patron.

I will be bringing my own imigran jabs with me‚ complete with letter from GP saying why I need to carry them. If I can just sort the oxygen then my trip to Aus will be okay. And plus I would love to meet up with some 'Stralian sufferers.

Hoping you can help and wishing all some PF times.

Val.

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04 Jul, 2010 - 1:55 am

Hi Val‚ what a delightful place to say you're from; Tenby‚ Pembrokeshire. I can't help you with info‚ but I do wish you the best of luck‚ and i'm told welder's oxygen is fine in a pinch‚ it's just the mask you need to take care with. (visions of a Dragon Lady marching onto a building site...) Best of luck with your travels‚ and let the airline crew know‚ just in case.

Cheers peter.

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03 Aug, 2010 - 11:19 pm

Hi Val, Welcome!

Oxygen in Australia is only available with a prescription for medical use, unless it is prescribed for respiratory physicians there are no subsidy's for cost so the user must pay the full amount privately. The letter/ prescription from the doctor must have your details, contact number, address, the flow rates liters per minute (needs to be at 15L/per min) , amounts of usage eg. 6 attacks up to 20 mins per attack and straight flow or pulse flow. Its a good idea to get the doc to also include that you need a non re-breather mask. There are a number of company's which will supply but the one we use is BOC they are suppliers all over Australia, the costs associated for rental are as follows:
Regulator: $19.95 per month
Oxygen bottle rental E cylinder (largest avail): $12.75 per month
Trolley rental (required by company for OHS reasons): $6.30 per month
Replacement cylinders: $15.75 per cylinder
Fee for replacing cylinder: $11.20 each time
Non- rebreather masks: $ 8.50 outright purchase price
Delivery and service fee: $51.55

You can organise to pick up or have the cylinders delivered directly with your local supplier. The phone number for Boc Healthcare is 1800 050 999.
These are the prices that were quoted to me last week.

The non rebreather masks can also be purchased on ebay for either $5 or $7 from ebay store Elite Medical Solutions Seller id is: medivac22a. The postage fee is around $6.
I would try to have it organized before you arrive as it can take some time depending on your location. I hope you have a fabulous trip to this awesome country and if you head down towards Victoria let us know! Hope this helps.
Regards Shell

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26 Oct, 2010 - 6:10 pm

Hi all

And thank you so much Peter and Shell for your kind replies. I have sorted my oxygen both at my daughters and on the flight over - just so you guys know for future ref, Virgin Airlines will lay on oxygen free of charge, when you book talk to Special Assistance. They know all about CH.

We arrive on 6 November, I am so excited I can't tell you.

If anyone wants to meet up, PM me on here with a phone number. I will call you from my daughters - she's in Narrabeen, Sydney.

Once again, many thanks.

Val.

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26 Oct, 2010 - 7:35 pm

dragon lady,

Are you my mother-in-law? Only joking.

Amazing to know that Virgin are aware of CH and take care. Maybe Richard Branson will enter the health care arena? A free flight on the spaceship trip for CH sufferers would be nice.

Have a happy and pain-free trip. Enjoy.

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27 Oct, 2010 - 1:02 am

Hi Val
Well It is not long now!
Have been watching your preparations as you have been planning your trip to Australia and hoping all goes well for you.
It certainly sounds as though Virgin Blue have come up trumps for you.
I am about to return home after spending a week with my daughter in Melbourne after the recent passing of my own Mother (93) so I know how important family is.
Thankfully my CHs have held themselves at bay for the first time this year, which has been a great relief for me and my family and I have beeen able to manage OK and most importantly enjoy my time with my daugther and grandson.
I hope you enjoy your time with your family and you are pain free.
Cheers
Heather

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31 Oct, 2010 - 4:12 am

Hi Val,
wow, good news about Virgin having oxygen available; that's the sort of thing that will swing me when choosing an airline. I almost always have an attack on long haul flights, whether i'm in season or not. I don't know if it's lack of air or the (generally) elevated temperatures, but I usually end up spending most of the flight standing up in the cross passage between the aisles.
Best Wishes to you for a great holiday with NO need for oxygen at all.
Cheers Peter.

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04 Nov, 2010 - 7:42 am

Thank you all so much. I am about to do the online check in and we depart at 9.25 UK time tomorrow night. Hopefully I will log on during my trip. we are both so excited and our daughter has already called us twice today and we have to call her once we are through to departures tomorrow night - she doesn't trust her doddery old parents. I am hoping my prospective s-in-law will teach me to surf!

So g'day all, and once again thanks for your help and good wishes.

Val.

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17 Nov, 2010 - 6:51 am

Just to add to the above, we are now in Sydney on the last leg of our trip, having visited Byron Bay (heaven!) and we even managed to arrange oxygen whilst we were there! We have had an amazing time and have fallen for Australia big-style! We will definitely be back. Also very happy to hear the wonderful news of the Royal engagement of Prince William and Catherine Middleton.

Thank you all for your help, I wish you all PF times and hope that next time we can meet up with one or two of you guys.

Val

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18 Nov, 2010 - 11:56 am

glad you have had such a nice time here! yes, my Aunt from Leigh-on-sea comes out here every now and then, and is planning on moving here, as she loves it too.

Who is Prince William and Catherine Middleton?

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19 Nov, 2010 - 9:52 am

Now Roger--behave yourself!!
Val--just so pleased that your trip has been as you had hoped and planned that it would be. Safe trip back to your "home land". Australia "aint half bad" is it!
And yes we do (or some of us do) still take more than a passing interest in the Royal Family.
Heather.

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25 Nov, 2010 - 2:29 pm

lol. If the royal family cared about my marriage or engagement, then I might be inclined to care about theirs.... otherwise, I don't know them, so what's the interest?

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