Omg! Back in the dark ages!

I was assessed for oxygen by my nurse at as I cannot walk to my car,or do anything a s my levels are to low ,although I still have to have another assessment to make sure.....joke ,blimey any surer and I will be in a hospital bed! Lol.they set their 02 meter 4 digits higher,but it is no good trying to talk to them about this ....hard and fast Rules. Anyway what they showed me,no words to describe the heavy oxygen ,I would do more damage to my body having that thing hanging on one shoulder would deform me!the option is a trolley how dangerous,bloody hell all I want to do is go out,walk along the beach,2yrs I've not been anywhere ,I am so out of breath when walking that do not dare mention exercise to me if you can't give me what I need to do it! So sitting about as usual!!! I think it's time to study private health insurance ,I've had enough of NHS ,I showed t hem the oxygen I get on the internet ,made in Germany (top),light as a feather,said how do you think I have managed? No reply.i did have to mention I am not stupid have done my study and have a oxymeter . Time has come to look for private help,I'm sure this country cannot be so backward ,they can make planes,rockets but can't make a light container for oxygen......bloody discusting?

7 Replies

  • Hi

    I to was assessed at pulmonary rehablitation. This as to be confirmed by your oxygen team at local hospital . I go for a six minute walk test every six months.

    As I am only on 2 lpm, the options available where, cylinder with trolly, liquid oxygen, portable concentrator with trolly.

    As I live in a first floor flat the options where reduced to cylinder with trolly.

    Although fine when on the flat climbing stairs was a burden more with shopping as well.

    I decided to purchase my own POC a Airsep Focus which is the lightest on the market, but it is only suitable for 2lpm.

    If you are on 2/4 lpm there is several on the market weighing 2.2kg.

    Above that then you will need a transportable POC which weigh in access of 4/5 kg.

    The ones provided by the NHS weigh about 3 kg and comes with a trolly, and will cater for upto 5 lpm.

    When the NHS supplier equipment it as to cover the widest spectrum possible.

  • Thanks stone, I am not on any at the moment,fine when still,can't walk far,tob,I would like to buy my own but need help with it,I need to walk along the beach,do tai chi , DO somthing after2yrs of needing it,how can I walk with a trolley? Lightest portable thing possible!so is that the one you bought?i don't understand the amounts ! Would a nurse help me out,?

  • Hi

    When you are assessed for Ambultory Oxygen, you will do a six minute walk test. They check your O2 levels every minute, you will start with no oxygen then it will be increased until they are satisfied , your levels of oxygen are maintained at an acceptable level.

    Only then can you decide the type of equipment that is suitable for you needs.

    Although similar oxygen providers may differ in the type of equipment supplied.

    As a typical appointment is about one hour, there will be plenty of time to discuss you needs, always mention what you would like to achieve.

    Where you would like to go.

    Remember supplementary oxygen is only to maintain your oxygen at acceptable levels, it will not always assist you breathing , although it will take the edge of severe breathlessness and give you more controll.

  • You say you are not currently on oxygen, other than stuff you buy on the internet, and you want to ditch the NHS without actually having been through the system You want to walk along the beach, do tai chi and other exercises! What you have to realise is that if you are so much out of breath then IPF sounds to be far advanced and you have to realise you will never do what you used to. I have had IPF for 13 years now and on a steady decline, easily having Sats of 64% if I am not careful, I am on Oxy for at least 20 hours per day....what are your Sats readings on your oxymeter?

  • .....and I almost forgot, Private Health will take you on if you are healthy, they will not take you on at standard rates if you are already ill, it will cost a fortune....also if you need home oxy on a concentrator the NHS pays for the electricity, private health does not and it costs a fortune!

  • I'm lucky enough to be able to lug around these "portable" cylinders but eventually will need a lighter alternative. Because they are filled to 230 bar, approx. 3300 psi they have to be sturdy. No doubt they could be made of some space age hitech material, much lighter but prohibitively expensive, but it's all down to priorities. We can afford £60+billion on HS2, but millions of us who live in the country can't get a fast and reliable enough broadband to enable us to run small businesses.

    Whatever you decide, make sure your choice of equipment is future proof. 2lt/min may be fine for now but your condition may deteriorate over time. Pulsed oxygen is not recommended for sleeping on, so do you need the option of continuous flow? Either way it should start with a proper NHS O2 assessment.

    Good luck

  • As others have said a proper assessment is requred to find out how much oxygen you need. It is not as simple as just getting the Sats to the correct level - you also need to have another level correct in your blood. This is checked when the nurse takes blood from an artery (usually in your wrist). I'm not sure what this other number checks, but I know it must be above 8 in order for your blood to supply the right amount ofoxygen to your organs. When I had the test the oxygen they were giving me was increased several times because of this number. My sats were within the correct level sooner. They also check you for co2 retention on oxygen, which can be porentially very serious.

    So, you must get yourself checked properly to see if oxygen would be helpful or not. And then, I'm sorry to say, you sometimes have to come to terms with what you get - there may be nothing else that suits. I know this because I have /am going through the frustrations of this at the moment. I am gradually accepting where I am and saving my energies by working within my limits. I am now going to weddings and dancing with my cylinder, hiring a wheelchair/electric scooter when I know its too far to walk, looking at signing up for a blue badge so my husband can drop me where I need to be dropped.

    I have a fairly large cylinder (400) because my level if 7lpm on ambulatory. I have a snazy shopping trolley which I wheel it around in, other times my hubby carries my tank for me. You can also get a slimline trolley which the cylinder bag sits on.

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