I suffer from Neurofibramatosis and P... - Lung Conditions C...

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I suffer from Neurofibramatosis and Pulmonary Hypertension, I currently need 12 litres of Oxygen per minute - 24 hours a day.....

12 years ago•8 Replies

due to the amount of Oxygen required I am finding it difficult to get out and about. In the house I have 3 perminant Oxygen Concentrators linked together to produce the 12 litres a minute of oxygen I require.

I am unable to use my portable oxygen concentrator now, due to the large amount of oxygen I require, and my companion liquid oxygen containers now only last around 60 - 90 minutes.

Is there anyone who either requires large amounts of oxygen or has experience of this, can give me some advice on what is available on the market or any ideas of how I can get some quality of life back by being able to leave the house for a day trip or even a short holiday without the worry of my oxygen running out or needing a small wagon to follow me around with lots of spare cylinders.

Another idea for a few days away was - Is there any retreats where Oxygen dependent people can go to enjoy a few days away where Oxygen is available at the location.

I know I can have a concentrator delivered to a place of holiday, however this is more difficult now I require 3 machines at one time.

I look forward to your ideas and suggestions.

Many Thanks,

Eileen.

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Eileen25

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8 Replies

•

12 years ago

Hello, sorry I cannot help and I hope someone who can will be along soon. Meanwhile, why not try ringing the BLF helpline?

• in reply to12 years ago

Hepline number is 03000 030 555

tanyamarie12 years ago

Hello,

Are your concentrators high flow? If not, get your respiratory nurse to fax a prescription to your oxygen supplier for 2 high flow concentrators. They each go up to 8lpm and having two will be a heck of a lot easier around the house than 3. And not as noisy! As for the cylinders, not sure about the liquid ones but the standard o2 ones, yes the small ones only last about an hour, maybe less but for the home you can get the large ones that last a lot longer.

You are right about getting the concentrators arranged to a holiday home, you can get the cylinders delivered too. Whatever you need your respiratory nurse can arrange a hoof for you.

As for going out, I don't know of anything for long duration o2 support just take as many cylinders as you can carry etc. Not ideal I know.

Also, just a thought, are you having the high flow cannulas as well? They should go hand in hand with the high flow concentrators but some companies require it to be requested on prescription.

Hope I have helped and you get somewhere x

12 years ago

It could be time to discuss using a non re breather mask when using the high flow rates that are above what standard cannula can supply, never been a favourite item masks they hide the handsome chiseled features (shortage of oxygen leading to delusions... never)

Discussed this with my oxygen tech off the record so to speak and supplying three concentrators is often a way of providing redundancy, whereby if one machine fails the other two at full output can still meet the demand as they do not consider it best practice in running machines at maximum for long periods (24hours a day) in this case.

Using several size "F" cylinders in a trolley will allow trips a short distance away from the concentrators and this is often quite enough excitement for one days journey with lungs that require as much support.

Travel safely on the journey

Easybreather12 years ago

Hi Eileen, have you tried contacting the Pulmonary Hypertension Association? They may have more specific help regarding your particular condition, i.e. PH.

phassociation.uk.com/

Eileen2512 years ago

Thanks everyone for your replies so far, it is most appreciated.

Not sure if my concentractor is high flow, I know i was told that for the amount I need that 3 machines were required, however i will speak to my oxygen nurse for further advice and to ask about a High Flow Concentrator, as mentioned 2 machines is better than 3 running 24/7.

I will also give the BLF helpline a try too.

Another question I'd like to ask, is there a maximum amount of oxygen/cylinders we can carry in our car, again for getting out and about or away to a holiday home for example... I will need enough for the journey and to cover incase of any hold ups or breakdowns whilst on the way, or is it expected that I should stay close to home and not travel too far.

I will also put this as a seperate question on the forum.

Thanks again.

tanyamarie12 years ago

We used to take 10 cylinders with us. Four each in a box that would go in the boot and then one being used with a spare handy. They would last at least 8 hours depending on lpm used.