Question

[Julier1955]

Hi all

Sorry not been around for a couple of weeks have been busy trying to get out and about more but returning shattered 😴

I wondered if anyone is on more than 10 -15 hours per day oxygen (including during sleep time) and if so, how do they work it to maximise time off it?

At the moment I am putting it on at 7pm and taking it off at 7am which is 12 hours then during the day depending on my schedule I will make another 3 hours up.

Last evening I put it on at 7pm but have just removed it at 10am which is 15 hours, however, it does seem a long time off it now until 7pm this evening. Are you still with me as I do tend to ramble 🤐. Is anyone else doing it like this and if not, I would love to hear from you.

Thanks

Julie 💕

[Damon1864 Volunteer]

Hi Julie I only use my ambulatory oxygen when I really need it, I would love to be able to come off it permanent. I know it's possible so I will keep trying. Have a lovely day and take care of yourself 😊 Bernadette xx

[Julier1955 in reply to Damon1864]

Hi Bernadette

Thanks for responding.. I would dearly like to come off it too but since my oxygen nurse cancelled my appt on 30 Jan I am nowhere near finding anything out. A bit of snow and they are cancelling all over the place. I wouldn’t mind but they are a junction down from me on a dual carriageway which at 1300 would have been clear 😘

Even if they can reduce the 15 to 10 per day it would be good. I am only on 1L and would be happy if they wanted to up it a bit and reduce the hours but I don’t know if it works like that so in the meantime I’m carrying on as normal.

Ok mini rant over, I’ll see what response I get and perhaps give the team a call later.

Julie x

[Caspiana in reply to Julier1955]

Hi Julie,

Like Bernadette I am also on ambulatory oxygen. However my lung consultant is quite insistent that any changes in my usage of oxygen therapy must be approved by him first. So if I have any doubts or want to change how many litres I am on for any reason I talk to him and we work it out together. It may be best to consult with your team. I hope you can get answers soon. Have a lovely day.

Cas xx 🙋🌸

[skischool]

Julie,unfortunately the general medical opinion governed by Nice is that for Long term oxygen therapy to be of any benefit it needs to be given for at least 16/24 hrs.i don't think there is much by the way of negotiation with that figure and i suppose it is down to the individual how best they fit this into their lifestyle.

Hoping that you can devise a strategy that works best for you.

Best wishes Ski's and Scruff's x

[mikeadams51]

Have you a oxymeter. If not buy one from a chemist or amazon sell them then you can monitor your own oxygen levels. Oxygen saturation should not go below 88% for more than a few minutes so if you find yourself out of breath measure your oxygen levels if below this level use oxygen set at the level prescribed but your nurse. I have to use oxygen over night at 1 lpm but only use ambulatory oxygen when active and not sitting. You need to push for a full oxygen assessment. Good luck

[Julier1955 in reply to mikeadams51]

Hi Mike, thanks for coming back to me. I have an Oximeter, but my team said if I was meant to measure my own sats then they would have provided one for me. She said since I have one now, only use it weekly. My parameters were set at between 85-92 by the consultant in the hospital so I think I’ll just keep my eye on them.

I use ambulatory oxygen when I go out to the shops or any other places outside the home, but whilst indoors I use the one provided (bit like a small set of drawers) and I’m linked by a wire to my cannula so I can reach every room. I guess all I was asking was the best way to manage those 15 hours on it so I can have more free time in the day.

Thanks

Julie

[mikeadams51 in reply to Julier1955]

But do you really need those 15 hrs on oxygen? Unless you need oxygen 24/7 I can’t see that level of oxygen will do any good. You are perfectly entitled to check you oxygen levels at any time. I suggest you call the BLF for further advice. My advice I was given was only use oxygen if you really need it. I hope your oxygen team are not palming you off

[O2Trees in reply to Julier1955]

To say you shouldnt have your own oximeter is really outdated Julie. Feeling in control is important when we have these conditions and we should be being helped to self-manage. There's a real contradiction in not allowing us the tools to do that and sorry, but it's treating you like a child!

When we're in hospital, the normal range they usually want our sats to be at is 88-92% - reason being that if we go higher we run the risk of retaining CO2. I have never heard of it being as low as 85% but of course have no idea why he would be saying that. But unless Ive missed it, you dont say anything about your saturations - is that because you dont know your usual ones? I find it bizarre that you would be given a mere 1lpm for that length of time.

Do you desaturate at rest? Because if you dont, then I cant understand why you would be on O2 15 hours a day. Maybe you should call the BLF helpline (03000 030 555 - office hours) and ask their nurses. But do get an oximeter so you get to know how your body reacts.

And to answer your question, from knowing people who have been on 15/16 hours a day, yes it's quite normal to use it overnight so as many of the hours as possible are done then.

[Julier1955 in reply to O2Trees]

Thanks O2Trees and Mike Adams for your comments, it’s given me a list of things now to speak to the team about when I ring them tomorrow.

You ask what my sats are, well I was very breathless and was rushed into hospital on Christmas Eve as my sats were 71. I was in for four days where they were monitored and had various no lots of blood taken. They were actually confused themselves that my blood gases and sats were not marrying up. I’m now having investigations and waiting for Echo. All scans etc have come back clear. After three days and a long walk with the docs he informed the sister to change the parameters to 85-92 and drop from 2L to 1 L. To be honest they are 89/90 almost all of the time when I check them but on your advice I will check them more often.

I will let you know the outcome once I have spoken to them tomorrow.

[O2Trees in reply to Julier1955]

Yes, please do. We are all different and what might surprise some of us might be exactly what you need - we're not medical and have no idea why your consultant prescribed 15 hours at 1 lpm. 71% is obviously very low and I dont think you say whether you had an infection at that time - that can block the alvioli and prevent oxygen getting from the lungs into the body, thus lowering your saturations. Ive had that a few times.

Not sure either whether you said how far you desaturate when you are moving around, exerting yourself. (Forgive me, you might have said above but tiredness has got the better of me so not going to check back at the moment.)

Basically you need to understand why you are being prescribed as you are.

[Julier1955 in reply to O2Trees]

Thank you I appreciate your help. X

[Hacienda]

Hi Julie, Just got around to catching up. I too am on 16 hours each day including Nights, so Like you I do my best to use it whilst Sleeping(Generally 7 Hours). The Hours I didn't use at Home, I use while I am at my Exercise Class, 1 hour, Shopping(Mobile Inogen 1) couple/3 hours. I just go with the Flow to be Honest, ( Ha Ha), as long as I get & make up my my 16 hours, I feel fine. At one Point I thought I should be on more Than 1 L at Home, I am on 3 L when Walking and Exercise/Gym. I Do my Sats Every Morning, My 02 is normally between 88/92, that is ok. I record all my readings Oximeter/ Temp, BP. ( The Kit was Prescribed by My Consultant ) I log them for reference to Consultant for every 3 month appointment. Have been doing this for about 4 years now. The Exercises and Breathing Exercises have proven to be more beneficial to me by Not having to increase my L's. So, if your a bit worried, Phone your Respiritory Team. They will be able to Guide you untill you see your Consultant. XXXXX

[Julier1955 in reply to Hacienda]

Thanks lovely, I will and I’ll be in touch x