Well, I've just come back from seeing the respiratory nurse with my mum and she is in bits as they have prescribed her oxygen.
Whilst she is absolutely fine in herself and her breathlessness has subsided quite considerably (she has emphysema and bronchiectasis), when her oxygen levels were checked whilst sitting, they were 94%, but as soon as she started walking, they dropped to 79% - hence the prescription for oxygen.
She was in tears upon hearing that, however, after reading through some threads on here, oxygen therapy is quite common and isn't always long term. My mum is still fighting off a chest infection which the nurse said is probably the cause of the oxygen dropping. She only needs it for walking or going up the stairs and it will be reviewed next week when the nurse comes round to do a blood test.
Can anyone else that is on oxygen let me know how you cope with it (I think my mum thinks this is it and she's on the 'departure platform' as she calls it even though she walks around like me now) and she's ashamed to have to rely on it, however, I am telling her different. The nurse said she may only need it temporarily, but it will be reviewed. I've read a few posts where people have said how it's enhanced their day to day living - if you can give me some positive vibes about it and how you felt when you were first placed on it, I'd be grateful.
Thanks ……. wishing you all well.
Julie
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JForbes26
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NO NO NO IT IS NOT THE END - my husband was prescribed it four years ago and to be honest we sat and had a little cry. But we were so wrong - it gave him a new lease of life. Very similar position to your Mum - SATS at 94 sitting and then dropping as soon as he started to walk. He has been lucky the oxygen has helped his breathlessness and that in turns helps the stress. We have completely got over the fact people stare - in fact not many people do, its us that are more conscious. The oxygen people are brilliant and deliver next day. My husband is always much worse after an infection so the nurse is probably right.
I am sure the nurse explained that the oxygen is to protect the other organs from damage from lack of oxygen. Lots of luck to your Mum and lots of love to you both - she is very lucky to have you xxxxx
Like your mother I am on Ambulitory Oygen theraphy for exercise and moving around,it is given to protect your major organs, who don't take kindly to being short of oxygen because of our lung conditions.
The blood test ABG arterial blood gases test, is to whether you mum is a CO2 retainer or requires long term oxygen therapy (16 hour per day)
What you need to discuss with you respitory nurse is the type of equipment that will be suitable. A lot depends on Oygen required measured in LPM litres per minute. Will you mum need continuous or can she use pulse ( pulse mode will double the amount of time that each oxygen method will last)
There are cylinders large or small come with bag and trolley ( make sure you ask for them)
Liquid Oxygen comes with flask which you fill from a dewar. ( can be fiddle and cumbersome )
There is also portable concentrater can be heavy at 10lbs but comes with a trolley.
As the equipment as to ordered by your respitory team on prescription and any changes can take sometime
Discuss all the issues you can think of, going out, shopping, public transport.
When you know the oxygen requirements come back and ask as many questions as you like and we will try and assist in any way.
I will be all right, Julie. It will, it will. The idea of it is the most difficult thing. Once you're used to it, it makes such a positive difference.
I was put on O2 in September 2014 - at night through a BiPAP machine and extra during the day to make 16 hours in every 24. I had two static concentrators - one upstairs and one downstairs. The people who installed them were brilliant and so helpful, with great support available.
I was able to stop the overnight O2 last December and use it rarely in the day for the odd short burst. The Respiratory nurse wanted to take both concentrators away - not needed, but I get frequent chest infections and then my O2 levels do drop more so I insisted on keeping one.
Maybe by next week your mum's levels will have improved a bit. Tell her not to be frightened of it or what it means. It will make her feel better, able to manage her breathlessness better and able to do more. If she thinks she's on the departure problem just because of oxygen, she's got a long wait for the train.
I'm off for a quick fix. It sounds as though you're doing brilliantly, both of you. Love, Sue x
Hi ,I'm sorry to hear about your mum,I know how she feels I've worked dam hard the last 8/9 years to try and avoid using suplymentary oxygen ,,,,so far so good ,,,,much to the dissappointment of my grandaughter ,,,',,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,, ,,,,,,,,,,,,,who said don't worry nanny ,, if you do ever need oxygen or a wheel chair ,,,,,I'll BLING IT UP FOR YOU. ). ,,,,,,,,,,But I feel it would be a different story if it wasn't for the pulmary nurses,,,,and their help and support at pulmary rehab ,,,,I won't go on and on about it ,,,,as I've said on here soooo many times how I feel about the care I have received from them ,,,,can I suggest you ask the nurse or GP to refer your mum to pulmary rehab ,it's usually an 8 week course twice a week ,of exersise and education about our health and how to cope and get the most out of our medication etc including those who are on oxygen ,,,met here a few of patients at the gym after doing the course who are on oxygen,,,,,worth a mention to GP perhaps ,,,,
Thanks so much everyone - you're such a lovely bunch and have really put our minds at ease
She is on 2L oxygen up to a maximum of 4 hours a day - she has been told to just use it when walking. She has just had 3 cylinders and a backpack (I joked she will look like Dora the Explorer) delivered which is a little heavy, so I'll see if I can get her a trolley or I will carry it for her when we go out - I joked it would be like taking my dog for a walk!
I'm so glad I found this community page as it is so nice to ask questions about my mums condition and to be able to reassure her that she's not going anywhere yet and there's thousands of others going through the same.
Hi Julie please tell your mum not to worry. I have been on oxygen for a month after a 2week stay in hospital. I was on 24 hrs @l ltr . My Sats were 83 when admitted. I am now on same for 16 hrs a day. My Sats soon fall to the low 80s when I come off it. For me it is a relief to be on it. I have just one concentrator at the moment and use canisters for going out which I have in my 3 wheel rollator. My breathing has improved a little. It has been the longest time I have been free from anti biotics for months. I try to see it as a new medicine that is keeping me going. Sure your mum will cope.
Hi, tell your Mum not to worry. I've been on O2 for the past nine years. First 16 hours per day , now 24/7. It makes breathing so much easier. Especially if only needed for stairs etc. Takes a wee bit of getting used to but worth persevering.
Hi Julie, I have been on ambulatory oxygen for quite a while now and it has improved my life so much, yes it is a bit heavy but I took off all the removable straps on the case and have it on a trolley secured with some Velcro. You should be able to get a trolley from your oxygen supplier although I did buy a lighter one from Ebay.
Don't worry about using it out doors, if anything people are more helpful and pleasant although lots do stare but who cares I wouldn't be out there walking without it.
I did once have a little boy ask "what have you done to your nose"
I LOVE my oxygen it lets me do things I couldn't before and is protecting my body from lack of it.
I agree with everyone else. I knowhow your Mum feels, I was the same. In fact I said no initially, I thought I could work at exercise and get back to where I was. Two days later I phoned them and said sorry, can I change my mind? I had really thought about it and realised how it could help me, how good it would be not to struggle. Sadly I have not got back, I now need oxygen 24/7 bur I am so grateful to have it. There are lots of benefits as well as protecting your heart and other organs, people hold doors open for you, offer to carry things and are mostly wonderful. If anyone stares I smile at them. Myfamily don't really notice it and that includes grandchildren. Tell your mum to enjoy the freedom it gives her and wish her well from me.
Please reassure your mum that it's not the departure platform but more of a stop on the journey. It's more likely to prolong her life than shorten it. I am much more active for having oxygen as it helped with my SOB and I found that I could do more without having to keep stopping. Pushing the trolley around or carrying the small ones is a bit of a pain to get used to, but soooo worth it!
I plan to take a cylinder into the garden this morning and do some light work out there
Oh please tell your mum it's not a sentence, I was put on oxygen fifteen hours a day to start, after 6 months I went down to just ambulatory oxygen then after a further three months off it all together so don't give up
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