Losing my Home Oxygen

Losing my Home Oxygen

I have been on home oxygen for 11and a half years. The Oxygen Nurse from my local hospital has tested my blood (from an ear sample), after going all night without oxygen, and has stated quite categorically that I no longer need home or ambulatory oxygen and that it would be removed from my house. I asked what she thought I should do when I get so short of breath - as I do after any activity. The response was to stop and recover and that oxygen could not solve or help my breathing problems caused by COPD! This has to be ratified by her boss (The Consultant) and my GP but it sounded pretty final. I am at loss to know what to do.

More NHS cutbacks?

21 Replies

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  • All sounds a bit sudden and it needs confirmation from doctors. Let's hope you have the chance to speak to someone and don't just get cut off. Good luck to you. Xxx

  • Did she not check your ambulatory sats? She would need to have you walking without and take a blood sample to know you can manage without the oxygen. Of course, if you no longer need it that is a good thing.

  • Pre and post Oxygen Saturations need to be recorded.The same with Blood Gases, which are usually taken from the Wrist, but occasionally the ear.If the Gas exchange was satisfactory, it's possible the Oxygen is no longer required.It has nothing at all to with N.H.S, budget cuts.As a retired respiratory nurse, I do defend them.Not all respiratory patients benefit from Oxygen Therapy.We are talking pure Oxygen, which is prescribed with caution.The air we breath, is not pure Oxygen !! .Sometimes, paving ones tasks, and understanding our limitations, enable us to manage without Oxygen.Lots of factors to consider.It's not a matter of one size fitting all.Oxygen would not be stopped unless it was both safe, and in the patients best interests.Respiratory Nurses, are highly trained and skilled.I think you can be assured in your Nurses competencies, good luck 😆 .

  • I am aware of all you have said and agree with most of it but all I suggested was that the ambulatory sats would need to be checked before oxygen could be safely withdrawn.

  • I'm sure they your team will follow policies, before discontinuing your Oxygen .

  • I am afraid you are mistaken. I am not the one having their oxygen discontinued; it's Pedros who posted about the issue, see above, and my comment was for him.

  • Loops, my apologies,😆 .

  • Hi

    Doubt it would be because of cutbacks, if your ABG test is fine then there would no need for LTOT long term oxygen theraphy. Not sure if blood sample from wrist is better.

    Short term or Ambulitory oxygen is determined by a six minute walk test.

    Although she is correct in saying oxygen is not given for breathlessness, I would seek further clarification from your oxygen team and consultant..

  • I was told by a consultant in hospital that blood gas should be taken from wrist for more accurate test. That determines whether oxygen is needed to keep the heart under less pressure. I had an echocardiogram today . Results will go to consultant.

  • Wrist samples are preferable, however we do use samples from an ear lobe too.Quite satisfactory.

  • Sounds very strange to me. Resting 02 and ambulatory 02 are never the same and both should be tested. If you can do without it, that's excellent news but I'm sure you'd like to know for sure whether it's appropriate or not.

  • That sounds very sudden - perhaps you could call the helpline and ask their advise. 03000 030 555 - the nurses maybe able to help you. Good luck xxx

  • An earlobe blood test is not always as accurate as an ABG and when these tests are done its at rest ,,,,, then there is the 6 minute walking test but im sure you know that as you have been on it so long.

    I would be nervous in your situation and would be questioning this with my consultant. You do not have to allow the oxygen company to take away your oxygen you can refuse so you could consider that until you have chance to speak to someone ...Perhaps give your consultants secretary a call to get an appointment it does seem strange that you have been on it such a long time but suddenly dont need it

    You could always call the BLF nurses but if it is correct and you no longer need oxygen thats fabulous news !!!

    I hope you get things sorted out

  • I have nursed patients who have been on home O2 long term, but have been able to discontinue use.The O2 suppliers, take their Instructions from the Hoof team.If long term O2 is no longer thought to be necessary, that is a positive indication.Too much O2 is detrimental, as in O2 retainers, which can happen over time.Lots to consider.

  • Hi Pedro's hope you get it all sorted out best wishes.

  • Hi Pedros, I was told I did not need home oxygen so I insisted on having my levels monitored overnight which I did and that showed that for 84% of the night my levels were between 88 and 84 therefore I still need it.

    Ask for the overnight test you have nothing to loose.

    take care

    polly xx

  • Hi Pedros, if you feel you still need it when you are active have a word with your doctor and go from there, all the best, huff xxx

  • As I'm sure you know Pedros, resting and ambulatory sats are different, as Billiejean says above, and she's right, both should be tested. The standard way to test ambulatory oxygen need is the six minute walk test which specialist physiotherapists carry out - you wear a pulse oximeter on your finger and s/he will note your oxygen levels throughout. The test is often carried out both with and without oxygen to see what difference it makes.

    I would suggest getting your own pulse oximeter so you can check your sats yourself - they are available on Amazon or you can get them in Asda.)

    Polly's suggestion of an overnight test is a great one, as resting sats may vary at night from what they are resting when you are up in the day.

    Please talk to your GP about this. It might be useful to ask for a medication review to address the breathlessness. And a referral to a pulmonary rehab course would make you stronger and fitter and therefore less breathless when you are moving around.

    Good luck :)

  • They have to get a consultant to sign off on this and I personally would insist that he/she sees you first as this should be their informed decision. They tried to do this with me two years ago and I suspected at the time that it was a cost cutting exercise but I got so emotionally and physically upset they delayed any decision and any consultants appointment and now I have moved areas it has never been suggested again - not by my consultant or any hospital ones or anyone else - I can imagine after 11 years this feels to you like taking a life line and I agree it did to me and made me ill, and I had only been on it for 2 years when 'cold turkey' was suggested so please fight this - good luck - take care and keep us posted xxx

  • this sounds crazy! why would you not need your oxygen after all those years? Have you gotten better? If not I really think you need a second opinion before you allow them to come and take your oxygen equipment.

  • You need to see a lung specialist and get that taken care of. No NURSE should be able to change anything, only your own doctor .

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