Oxygen concentrator used downstairs and upstairs

[sarcoid123]

I have an oxygen concentrator downstairs which I use on 4 litres a minute when walking around and 2 litres a minute when resting. I need 2 litres a minute when sleeping at night. My tubing reaches from downstairs to my bed. Does anyone have a good idea on how I can go upstairs with the concentrator on 4 litres a minute so that I can walk around upstairs and do my active cycle of breathing (huffing) to cough up my mucus, but then turn it down to 2 litres a minute while I sleep. I do not think there is any solution but someone may be in the same situation.

I think I have to turn it down to 2 litres a minute before I go upstairs and take my oxygen cylinder upstairs with me and use the cylinder on 4 litres a minute.

[pollyjj]

I have my concentrator upstairs on 1 litre for sleeping, it is piped through the house and downstairs if I need it when resting I have a switch on the wall upstairs which I can move the oxygen

from bedroom, to living room and from living room to dining room.

The rest of the time when I am moving around I have cylinders on a trolley (4 litres per minute)

This way the concentrator can be upstairs and the cylinders downstairs which can be altered to 2 litres when resting. Don't know if that would work for you.

take care

polly xx

[Watfordgirl]

Hi sarcoid123, Gets difficult to manage, doesn't it?! Do you have an 'ordinary' concentrator, or use liquid O2? If it's an ordinary one, would you have room for another upstairs? Going upstairs would be easier if you didn't have to carry a cylinder up with you. It might be easier for you if you did your active cycle of breathing and cleared the mucus before you tackle the stairs, though I can understand if you prefer to do it in the privacy of your own room. [I sound like a tramp on a bad day!].

I don't know where you live, but it might be worth phoning your oxygen supplier - they're trained and also see loads of other people who might have similar problems.

Good luck! I expect others will be along soon with more helpful and more obvious answers.

Sue x

[Watfordgirl in reply to Watfordgirl]

There you are - polly got her reply in first. Something will work! x

[brunlea]

Hi I am on 4ltr 24 hrs a day - My concentrator runs downstairs with a tube to upstairs , with a junction box at the bottom of the stairs , which I switch over when going to bed.

Still difficult breathing , but we can only make the best of what we get - John

[evermore]

Hi, I had the same problem. There is a solution. I purchased a valve which fits between my cannula and the tubing I can turn it to the required L wherever I am in the house. You do have to sit with it by the machine when you first get it and calibrate that it works correctly because they are not always spot on, I use a marker pen on the valve to show where I need to turn it to for my needs. The valve can be purchased from

softhose.com/

I get my cannulae from this company as they are the softest in the world, the company is in the USA. They have an excellent response time for orders.

Now I have to tell you that your oxygen supplier will not approve, they don't like us using anything that they don't supply. However this valve does not harm the concentrator, it merely moves the ball to the correct place. You leave it at the highest setting you use and turn it down when needed. My engineer always phones before he arrives to check my oxygen equipment, which gives me time to remove the valve before he comes, it just saves any aggro.

[Sheilab123 in reply to evermore]

That's interesting Evermore, I will be looking into that, thank you. Pleased Sarcoid asked the question because I've been pondering on that for a while. S xx

[Honeyface in reply to evermore]

Hi this company has gone out of business hasn’t it? Have you found another supplier? Asking for my Dad

[sarcoid1234]

Thank you very much to everyone who gave me information. I have looked at the softhose.com website and may send off for one of the valves to try it out. I can't quite understand how it can turn down the flow but might be easier to understand when I use it.

[tnof in reply to sarcoid1234]

sarcoid1234 - I am just now being told to try oxygen at night for my sarcoid condition which I got from being one of the first responders at 9/11. I feel as if I have nobody who feels the same symptoms and knows how bad sarcoidosis can be... I am in so much bone and joint pain in the mornings that it is almost unexplainable. Do you feel as if your body has been so depleted of oxygen at night to the point of unbearable pain. I am starting to be afraid to go to sleep which I know i need desperately ! I need help and dont know where to go so if you know of some kind of treatment please it would be greatly appreciated. They dont seem to want to help men like me and my 9/11 situation it is all being kept so hush hush and we did nothing wrong to deserve to be treated so terribly.

TNofear

[sarcoid1234]

I did a search for softhose.com and came across an Inspire chat website from 2013 inspire.com/groups/living-w... with some useful tips for people using an oxygen concentrator which might help. For example:

1. Clip your hose to your clothes to stop it ‘pulling at your nose when it gets caught. Fantastic idea as I often have that trouble! They suggest you could use a metal document clip or a clothes peg or something similar safehomeoxygen.com/ .

2.Softhose.com (in USA!) supply much softer cannulas for people with sensitive noses.

3.Ask your oxygen supplier for a little swivel clip between the long tubing and the cannula; this prevents the long tubing from twisting round itself which I find is a bit of a nuisance.

[evermore in reply to sarcoid1234]

Hi Sarcoid, I hope you get a valve and find it as good as I do. I can't explain how it works really, but my husband says it has the same effect as if you pinched the tubing and then you would see the ball in the concentrator go down. You always set your concentrator at the highest L that you use and the valve will turn down from that. You have to tell Chris what your prescription is and she will send one that is correct for you. Chris had an aunt who used O2 and she invented the soft tubing and cannulae for her initially. If you have any queries about the valve or anything else she replies very quickly to e mails.

I saw the tips you found on inspire, I wonder what sort of clip you would use to clip the hose to your clothes? Its a good idea but I don't know what clip , any ideas?

[sarcoid123 in reply to evermore]

in reply to Evermore: To clip my oxygen tubing to my clothes I have today started using a plastic bag closer/clip about 4inches long and it works fine. You can, I think, buy them in supermarkets. No more head pulling when the tubing gets caught under a door! The Inspire blog did mention a metal document clip (look it up on Google) or a clothes peg, although I would think the latter would constrict the tubing too much. Thank you again for your suggestion about turning down the supply.

[evermore in reply to sarcoid123]

Thanks Sarcoid I will look for one of those clips, seems a good idea. I agree a clothes peg would pinch the tubing too much, not sure what a metal document clip is unless they mean a bulldog clip but that could cut the tubing, think I will stick to your idea.

[undine]

I have two concentrators one in the lounge and one in the bedroom so as others have said it would be a good idea to ask your supplier if you can get two - also I have always wondered why they cannot get a remote control device on them so we could turn them off and on and up and down as needed without having always to return to base so to speak - surely remote control would be possible - just a thought meanwhile good luck xxx

[mogs302 in reply to undine]

The manufacturers don't want to spend the money even though remote control is ubiquitous . If the NHS demanded remote control, it would happen in a heartbeat. Instead, my repiratory team proposes lining my house with tubes into which I can hook. What an absurd complication!