Hi guys just a quick question, I have just been told that I need oxygen 15hrs a day, I understand that I need it but it is scary. My nurse tells me that I should feel the benefits but it won't help my breathlessness can anyone give me any advice,help in coming to term with this news and also how it might have helped you.
Many thanks, and kind regards
Linda
nothing to ioxegen its a life saver hun i have one that is large unit plugged in to ekectric which recycles if u like unless they give you bottles but using that much i would think they will give u recycled one they check iot regular and take redings so u get reinbursrst for elecric they are very good you must not get near naked flame and not in room where gas is lit hope this helps
Hi Linda
Don't worry about it. I'm on O2 24/7 and it's just part of my life now after 8 years.
Doesn't stop me doing anything.
I have a concentrator which runs on electricity, which I get reimbursed for. I have what is called a Home Fill System as I can fill small bottles with O2 to take when I go out.
It doesn't do a great deal for breathlessness, probably feels better though.
The main reason for using it is to keep plenty of oxygen in the blood to ensure all your organs are receiving enough.
I hope this helps.
Take care.
Kathy x
I'm on 15 hours a day but use it longer. I don't really notice anymore nor does anyone else really. They say it doesn't help with breathlessness but I feel it does. If your blood has enough oxygen then your brain tells your lungs you don't need to breathe in as much, if you get my drift. My respiratory nurses tell me to turn it up a bit if I'm more active.
I have a mains concentrator, a large cylinder in case of power cuts and two sets of portable cylinders for going out and about. One is about half the size of the other. When I wamt them replaced I call my oxygen provider and they deliver them the next day.
Just treat it as another medicine. As has been said, this one is to keep the organs healthy.
I agree with everything that Puff has said, I am also on it 15/24 but use it longer. Unlike Puff though I have a Helios Marathon for going out, it is a smallish tank I can refill myself from a large tank which keeps my mobility scooter company in my little shed. The oxygen company replace the large tank when needs be which is usually about every 5 or 6 weeks, I just ring and they come out a couple of days later. You need somewhere secure to store it though. Oh, just a thought if you ring your electricity supplier they will put you on their priority list and you should also inform the fire brigade, they will visit and check that you have enough fire alarms and if not fit more for free and give you advice on the use and storage of oxygen. Keep smiling
Carole x
I am not on oxygen, Puff, but your explanation is so clear that I could understand the reason for those having to use it. I am sure it will of great help to those who might need oxygen in the future. Thank you Puff, all blessings, Polly x.
All the previous replies are spot on. Just a small addition - if you are given one of the plug-in oxygen concentrators, get as long a tube/canulas from the supplier as you need to get around the house. Then, keep the machine in a room where it doesn't need to be shifted. There is a set of plugs you can buy on the net or in any largish supermarket that come with a remote control. You plug the machine into the Tesco plug and the Tesco plug into the mains. Just point the remote controller at the Tesco plug until they synchronise, and then you are able to switch the concentrator on/off from anywhere in the house or garden. If your garden is a couple of acres, forget the special plug and get the footman to switch your machine off.
You will get so used to the machine that you will forget you have the cannulas in your nostrils - don't worry.
I have tried to do that with mine but as the mains power goes off the machine thinks we have had a power cut and the alarms goes off. I guess they are not all the same
When you press "off" on the remote, there should be a shortish beep, then for the next half minute or so it will give a short beep every 5-6 seconds, eventually falling silent. When you turn it on again, you get a 3-second beep and out comes the O2. That's what happens with my machine which is a "Perfecto2". Switched it on downstairs about 5 minutes ago and now sitting upstairs without gasping for breath.
Good luck,
Dec
Hi
Yes. I am on 1/2 litre min 15 hours daily since Feb 14. Was like you at first, basically scared. I don't think I used it enough as a year later I was diagnosed with severe pulmonary hypertension: Obviously my heart took a hammering. Pardon the pun. I guess, I am one of those people who have to learn the hard way. Now I use the oxygen most of the time. Unfortunately, I can't increase my litres as I am a CO2 retainer. Still hopefully I am now ensuring that my organs get enough oxygen.
Look after yourself.
Malinka
Hi Malinka
I have the same problem
I also am a CO2 retainer. I got very ill last year but now have a CPAP machine at night which helps to stop me retaining. How do you cope with your retention if you don't mind me asking? Carole xx
Hi Carole
No don't mind at all. Feel free to contact me anytime.
I am apparently a borderline co2 retainer and on 1/2 litre oxygen. After the sleep study test I was given a bi-pap machine but I'm afraid it doesn't do much for my insomnia. Maybe ten minutes then I am wide awake. Having the machine breathe for you I assume only helps once you are asleep? Used it for about 8 weeks and still have to rely on the odd sleeping pill to get an sleep. I was told not to increase oxygen as this would affect the co2 retention so I don't. In any case I don't find it helps with my breathing. Hopefully it is protecting my organs but when I check my oxymeter, I get readings in the low to mid 80's, (it does creep only after the breathing push) and I was told that I should be between 88-92! COPD Nurses have been round to check. I do breathing exercises and a little yoga and sometimes lift weights (2 kg) I don't get headaches or feel drowsy during the day, guess we are all different.
Hope this was helpful?
Take care
Malinka
Hi Malinka
Yes definitely helpful. My sats must stay between 88 and 92. If I fall asleep on the chair my sats fall to 75 which is not good as we know. I am asking myself what the difference between my CPAP machine and your BI PAP machine?
I was made to come off sleeping pills, morphine and tramadol. In fact any opiates as my chest consultant believes they are causing sleep apnea. Since coming off all these drugs I feel better but the CPAP machine is my saviour as I now get 8 hours sleep where before I was grabbing an hour or two at the most and that had gone on for 8 months. As soon as I put my mask on and put my head on the pillow that is it until the next morning. On the machine my sats stay around 90 to 92 which is perfect. I did attend pulmonsry rehab but after six sessions I stopped as with my lung cancer too my bones and joints were not coping with lifting weights etc.
Instead the physio is giving me one to one sessions on breathing and breathlessness.
Have they showed you the hand test to see if you are retaining CO2? Xxx
Hi Carole
I believe that the CPAP and BI PAP or NIPPY as they are sometimes called are basically machines that apply positive airways pressure. I use the nasal mask as I couldn't cope with the full facial one.
If I didn't have the sleeping pills I probably would only get about 1 hours sleep a night. I retired last month so I it not so important to get a night's sleep but when I worked I needed to take at least 2 a week. I even tried lorazepam to calm myself down but I felt awful so stopped. I have tried nytol, lavender etc but to no avail.
I have a NIPPY review at the Harefield Hospital tomorrow and will ask the about the co2 hand test. Will let you know how I get on.
Take care
Della
Harefield just cancelled my appt. Now have to wait till 17th Sep. If you get the chance could you tell me about the co2 hand test?
All the best
Della
Basically you put your hands in front of you palms away from you. Put them upright level with your face. If there is no movement in your fingers or hands you are ok. That's what was happening to me and it's a classic sign of carbon monoxide retention. I do the test on myself every few days now! Carole xx
Hi Carole
Thanks for that. Is it palms down or up? Also if there is any kind of movement does that mean that you retain co2?
Cheers
Della
Hi i am same going on to oxygen on monday i am on 2 litres at night with my bipap but now need to go on to 2 l during day now as well i have been at bit nervous about it all they said i would get smaller portable tanks i use the concentrator at night but i am also a co2 retainer 1 doc last year said could not have oxygen during day because of co2 but now another is saying yes its ok its a lottery nowadays with hospitals and doctors
HOPE EVERYONE IS DOING WELL
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