How to get oxygen at home

My husband has obliterative bronchiolitis caused by a rare form of vasculitits. He is effectively housebound because of his extreme level of breathlessness and the effect it has on his mobility. It has been a great struggle just to get this diagnosed, and our GP and hospitals have been very negative about letting him have either nebulisers and/or oxgen at home. I know these would be a great help to him, and this is always the first thing they give to him as soon as he goes into a&e. Any advice please on how you have arranged to have any of these items at home? Many thanks.....

5 Replies

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  • Hi barneyboy

    I'm sorry to read of the problems you have been experiencing. Often when people are acutely unwell to the point they need to be admitted to hospital they usually need oxygen and nebulised medication to help to treat the exacerbation or problem they are having.and to help them rest and recover. Nebulisers deliver the medicine in a mist so a person does not need to take deep breaths to inhale the drugs. Once they are though this acute episode they can often go back to using inhalers as they did before and unless their oxygen levels are below a certain percentage the person will not need supplemental oxygen. Oxygen is a prescibed drug and too much can be dangerous.

    The general advice regarding nebulisers is providing the person can use inhalers (with a spacer device) they are just as effective as a nebuliser.

    Has your husband had an oxygen assessment? Has the GP ever tried a pulse oximeter on his finger to give a basic oxygen reading?

    If you would like to discuss this further you can call us on 03000 030 555.

    Very Best Wishes

    Jo

  • Hi Jo

    Thank you for your reply which shed some light on matters for me.... I am pretty sure he has never had an oxygen assessment, or an oxygen reading unless he has been admitted for pneumonia etc.... Where could we get an oxygen assessment - do we ask our GP or his hospital?. The hospital he is referred to is the Royal Brompton in London.

    Sam

  • Hi There

    The GP would be able to pop a pulse oximeter on his finger to check his oxygen readings, but for a more accurate and detailed assessment it would be through the hospital. Is your husband due to go again soon? The GP would also be able to refer your husband for the assessment, so depending on when the hospital appointment is it may be worth discussing with his GP.

    The following link from opur website may be useful to look at:

    blf.org.uk/Page/Oxygen

    Best Wishes

    Jo

  • It is quite common for those of us that fight for breath to need oxygen during an exacerbation but not need it once things have improved and we are discharged from hospital, where oxygen saturation will have been monitored whilst being treated. For a few our readings do not pick up enough that we can manage without supplemental oxygen keeping the major organs of the body supplied.

    My oxygen nurse described the oxygen as a drug which would be fed into my body concentrated making up for the amount I can breathe in but no cure for short of breath which still happens when up and about unfortunately.

    Trying to find the best care for your husband is a credit to you but he already has the best care with a partner that genuinely cares and understands the struggle that life can be and still support as you are.

  • I suffer with copd and was struggling badly so bought a nebuliser machine on ebay brand new you get mask mouthpiece everything you need for it and then I said to my doctor the hospital gave me the machine and now I just phone up and get the medicine when ever I need it and it has made a big improvement to my breathing really does help you can get them on ebay brand new for £30 best thing I've ever bought hope this helps

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