have just been told that I need a oxygen assessment, what do they do, and is this the same as having blood gases done,

[junespoon]

What would happen, if I refused the oxygen for going out with, and only used it at night would that be possible.

[billl]

hi ya . there aint a lot to it . oxygen nurse comes round to your house and gets you to walk about with a oxemeter on your finger . alittle thing that clips on . it measures pulse and oxygen level . takes about 5 mins . well mine did . I now use oxygen 24/7 . you would not believe how much better it is to cope just moving about .

[medow in reply to billl]

Hi Tobydoo. What was your oxemeter readings. I'm sure mine are going lower, really good to hear your feeling a lot better on oxygen x x x

[billl in reply to medow]

my oxemeter readings can go go as low as 78 but normally low 80s but I recover fairly quick now I have bean tought to relax and deep breath

[junespoon in reply to billl]

Thankyou, Tobydoo, makes me feel a bit easier,

[billl]

you can refuse any thing but they give you oxygen to protect your other organs .I was paranoid about going out with mine at ftrst I thought every one was looking at me. now its just part of my life .

[Hidden]

My husband went for his pulmonary rehab course last year - the assessment for oxygen was a six minute walk test with a clip on his finger to measure the oxygen saturation levels (sats). His dropped to 84 after only one minute. The nurses then asked him to do the test again with oxygen - the nurse carried the tank! This time his sats stayed in the 9o's. He was prescribed oxygen for exercise only. We were really shocked at the time but then we sat and talked and realised it was in his interests to protect his organs.

Actually he has found it very useful using it going to the big shopping malls etc. so although it sounds a bit scary just try to look at as another medication which may make your life easier. Good luck and let us know how it goes. TAD xx

[junespoon in reply to Hidden]

Thank You, Tadaw, explains it well,x

[happyfeet59]

I was told last august that I needed an oxygen assesment. The set proceedure was :-

check blood gasses at rest using arterial blood. This gives true o2 levels and co2 levels. Then put on oxygen and retested to check o2 and co2 was ok. Prescription sent to oxygen company and equipment delivered.

Checked again in 3 weeks to see it was ok. Then tested for ambulatory oxygen (for out and about) and prescribed literage for that. Told what equipment was suitable and how to use it.

It seems to me you are worried/embarassed about going out with the cannula on. I felt the same and tried to do all my oxygen at home. I was told 16hrs per day including nighttime. I soon realised my biggest need for oxygen was when I was 'doing things' like walking, shopping etc. So I had to bite the bullet. You may be different.

The consultant said research shows 16hrs of oxygen per day is the minimum required to keep your vital organs safe. But if your sats are low on resting, they will be even lower when walking/doing things.

Your oxygen nurse will test you and prescribe what you need. If you refuse to use it as prescribed you could be considered 'non compliant' and it might be taken away. The oxygen company take regular readings of your usage and send them back to your oxygen nurse. She will know if you are not using it as you should.

The only person who can answer your question really is your oxygen nurse - after you have been assessed. But, much as I hate going out with it, it has changed my life. It is a medicine like all others and I need it.

[junespoon in reply to happyfeet59]

Thanks for that Happy feet, explained a lot,xx

[junespoon in reply to happyfeet59]

You are quite right when you say, that its the embarrassment, that and the vanity.

[Toci in reply to happyfeet59]

Good post. NICE guidelines actually say that 20 hours is better than 16.

[happyfeet59 in reply to Toci]

Haven't read that myself but believe you Toci. Consultant said 'minimum necessary'. I was quickly put up to 22hrs which I suspect she probably knew was needed. I think she just didn't want me scared off before I gave it a chance!

[Toci in reply to happyfeet59]

NICE Guidelines 2010.

1.2.5.3

[happyfeet59 in reply to Toci]

Thank you : )

[Catnip]

I think that the bottom line here is, if you are prescribed oxygen, you need it. If you refuse to use it then you will do a lot of damage to your vital organs and you'll just make your situation worse. Oxygen is a medication which extends a full and active life... "You takes your choice": I know that mine was to use the oxygen.

[whit]

did i read some where that there are glasses that incorperate the tubing so that it doesn`t look so obvious?

[Hidden in reply to whit]

Hi whit, I saw those too but they were from America and expensive I think. No use to me as my glasses are on and off like a yoyo. Doesn't embarrass me to wear canula but we are all different I suppose. Popplewell

[happyfeet59 in reply to whit]

I saw them too. Think they would cause more of a stir than the cannula! They did look strange! And I already wear glasses so how would that work??

[O2Trees]

Just to give another viewpoint: I don't give a damn what people think, and i don't feel embarrassed, their problem if they have an issue. If they stare I stare back at them which embarrasses THEM! If ppl ask me about it, that's fine, i don't mind that, happy to explain. Sometimes i say its laughing gas, depending on situation.

It's new to me following bad exacerbation over xmas, and only ambulatory so far, so I'm still getting used to it. Possibly may not be permanent, but inevitably it will be one day

[Carroll]

I was assessed for oxygen whilst attending Pulmonary Rehab, just done the usual 6 minute walk with oximeter on sats went down to mid 80,s when not using oxygen and up to mid 80,s with oxygen.

It is really a simple test, but I am sure like others I was very embarrassed to use the oxygen when out , but I have been issued with a portable concentrator and it makes it more user friendly.

Don't worry take the test and here's hoping it all goes well.

[O2Trees]

i think its natural and fine initially but depends how long they carry on - amazing how long some ppl will ogle

[happyfeet59 in reply to O2Trees]

I laugh at the way parents squirm when their little ones piont and ask questions while the adults are trying to avoid staring!! So funny - children are just naturally inquisitive

[O2Trees in reply to happyfeet59]

Yes, i like the kids too.

[Toci in reply to O2Trees]

They always make me smile.

[Hidden]

I think you will find you will be told when you are to use your Oxygen. I do not use mine at night - it was prescribed as Ambulatory for me. I use it when out and about and also for when I am doing things in my own home.

To be honest, I am not at all bothered about using it outside and I haven't noticed any untoward reactions to people seeing it attached to me.

My assessment was done in hospital with a 6 minute walk without oxygen, then another with oxygen.

Thérèse

[junespoon]

Thanks all who have replied to my oxygen questions, we will see what happens,but thanks a lot xx

[junespoon]

Thanks for that Whit, sound a good idea, I am going to let my hair grow long too, a beard and mustash sounds good too. but thankyou for that.x

[longlungs]

Hi junespoon I cant help you at all im afraid,im not on it.I guess that if after assessment they say you need it you do.Gotta protect your organs eh? Change is always a little scary and daunting.Your get there . Janexx

[junespoon in reply to longlungs]

Thanks Jane, Its a mixture of vanity and finally admitting, I am not well, even my partner didn't realize how unwell, until Thurs,day, I have hidden it from every one, refusing outings, when I would have loved to go having a pretend coughing fit when I couldn't get my breath, Taking ages to have what I called a quick shower, sitting on the side of the bath to get breath back, see where I am coming from, but thanks you take care.Love Heather.xx

[longlungs in reply to junespoon]

Ah Heather what are you like a right secret squirrel ! Ah bless your heart suffering in silence like that,youve done extremely well to keep it hidden, but no more Heather eh time to accept what is me darling.Now that your partner knows perhaps you will grow together through this and face the changes together as you should be and start living again and theres lots of that still to go oxygen or not! Please keep well Janexx

[imelda16]

Junespoon hi ,

I don't comment often but you have just described how it was for me and my husband was the same . Thought it was just what age passes on but I have explained to my family don't know if they realise the seriousness of the desease IPF. But after 12 months on ambulatory 02 I am only just coming to terms with it and also my health.

I have just had a routine assessment and was told I now need LTOT which means 15 hours a day so need a concentrated fitted for around the house.

[junespoon in reply to imelda16]

Thanks, for that Imelda, glad that I am not the only one,trying so hard to hide things, just really don't want the family to worry,or perhaps feel sorry for me.x

[maggie44]

I use oxygen at 2 lpm at night - now increased to 15 hours. I also need ambulatory oxygen so have a cylinder which supplies oxygen on demand at 6lpm. I have needed this for a couple of years and to some extent have got used to the canula and lines down my face where the tube presses in as I sleep. Generally I have found people to be very kind - even with the oxygen I can be too breathless to speak immediately- even when I have walked only a short distance.

I am a governor at a local Infant school. Sadly I can no longer go into classrooms as I used to do - my compromised immune system puts me at too much risk of catching coughs, colds etc. However I often see the children when I go in for meetings and they do often stare. Because my oxygen is delivered on demand , it makes a hissing noise as I breathe in,which seems quite loud. I usually joke with the children that I sound like Darth Vader. If they ask about it I just say that my lungs are poorly, so the oxygen helps me breathe and get about. They seem quite satisfied with that.

I was quite surprised when I first had the ambulatory oxygen that my grandsons didn't turn a hair, whether at home or out in public. In fact the best thing as far as they were concerned was that my Blue badge allowed us to park near the entrance to restaurants etc! Oh and after they had encountered people diving with oxygen, the younger one told me he thought I ought to try diving as I would probably be brilliant. Bless!!

Maggie

[junespoon in reply to maggie44]

Thankyou for that Maggie, certainly gives puts all in perspective, the way children accept things.x