Maximum Home Oxygen, what is permitted?

[IPFsufferer]

Anyone know what is the maximum rate permitted at home? I am on 15 lpm and it does not seem to cope. Sats are fine at 91% at rest but ANY exercise, putting on sock, 3 metre walk to toilet, put on trousers, etc will send them down to 65%. I then have to sit still for 10 minutes to get them to 90 before the next stage

[DozyDormouse]

The highest flow rate on concentrators (dolby) is 18L/min and Air Liquide is 16L/min. I have a face mask with a 60% oxygen venturi running on 15L/min which will give me resting sats of 98. Like you on movement sats fall to around 69 on movement. It takes me about 2 mins to recover but for each successive movement they drop even further. I try to stop and rest properly at 65.

Without oxygen my resting sats are 70 is.

My next step would be a non rebreathe mask at 15L/min No venturi. Oxygen would then be at 90%.

I have got one in reserve for just in case.

Hope this helps regards Dozy

Do not be swayed be the name. Went through the options in November with my consultant. I have been home like this for 2 years, slow progression down and apparently unusual to get sent home with such high flow rates but better than being cooped up in hospital isn't it?

[IPFsufferer in reply to DozyDormouse]

Do you bother getting dressed every day? It almost kills me dressing and undressing, takes about 30 minutes for each with long rests.

[DozyDormouse in reply to IPFsufferer]

I do try as it makes me feel better and more real. It takes me about 30 mins and everything is pull on. No socks and flip flops.

I do not know what meds you are on but because I take 25mg Prednisolone a day then there is nothing wrong with my appetite. So I eat a high protein, and balance veg and carbs with plenty of roughage. Going to the loo takes energy and our life is about energy conservation but with plenty of movement.

Have you been to pulmonary rehab? You will not be able to do it all but that is all about doing things in timed slots because the more muscle you have the more oxygen will be stored.

As you are aware our life is governed by sats but I only take mine if I think I may pass out. I am not bothered by losing a few trillion brain cells that's nothing in the grand scheme of things.

I am 61 and have taken medical retirement and manage to fill my time. I am lucky that my husband does not pander and will only help if asked.

what about you? Do you have support and a good doctor and consultant? What about meds and how is your mood and are you frightened?

Sorry I am also very nosy you don't have to say Dozy x

[IPFsufferer in reply to DozyDormouse]

No I do not take any meds, other than diabetes and heart. Appetite has gone to pot. GPs are supportive but know nothing about IPF, consultant is fine but rarely see him. I am 73 and I think I am probably too late for new meds, have been referred to Lung Centre at Wythenshawe in early January but wondering if I will manage to make it. Called the Resp Nursing Team yesterday and the coming round today, will let you know, but over the phone suspected 15 lpm was not enough.

[Hidden in reply to IPFsufferer]

Like you, I find getting dressed takes me ages especially if I've had a shower first...but I wear much the same as Dozy...everything is loose and I wear baggy cotton trousers...

But I've found I feel better if I'm up and dressed...put make-up on as well...there's no rush after all.

Best wishes xx

[DozyDormouse]

Good luck with the nurses. Thinking of you x let me know

[PaulAllan]

I am at the other end of the scale. I am on 3lpm at rest sats 90 and 8lpm when active sats can go down to 70 when having a shower and dressing or just washing and getting dressed. Both can take up to 35 minutes with resting in between actions. I think my lpm rates should be higher but I am trying to last as long as I can with them as they are. Maybe the wrong thing to do but heyho.