Hi, All, I am new here but after recent chest flare up, 2weeks of steroids and antibiotics I find that I am relying on o2 for longer than my prescribed hours. Physical effort makes me grab my cannula. is it too much?
Looking forward to reading your informed replies
Dugy
sorry Im not on oxygen so cant offer any advice but would like to say welcome to the site im sure some of the other members will be able to help
Hi Dugy, welcome to the forum.
You're obviously very worried and you need to speak to your GP or respiratory nurse about your oxygen. Members here aren't trained medically to be able to give you a clear answer.
What i can say is that its not uncommon to need more oxygen during and after flare-ups. This can return to normal after a period of recuperation though what happens varies from person to person. For instance I was needing 4 litres during pneumonia early this year whereas normally i don't use any indoors. It took several weeks for my need for it to go down, as my O2 sats came up again, and now i don't use it at all (except for ambulatory). So you could well get back to your normal usage. But you MUST get in touch with your doc asap to discuss this.
I say that not to give you more worry but just that its the sensible thing to do. Take care. 
This can happen after an exacerbation, it can take awhile to get over it. Try to do a little exercise each day. Other than your prescribed hours you should use your oxygen only when you really need it. If you find you are still struggling talk to your respiratory team.
Welcome to the forum Dugy.
Best wishes
Jo
What EXACTLY is an "exacerbation"? I just thought it was when something happens, when you are not on oxygen, like a sickness or you accidentally breath in smoke or something and suddenly can't get a breath? Then you are prescribed oxygen therapy? A nurse today told me it is when you take the oxygen and still cannot get a breath?
In November was not on oxygen. was in a smokey casino 2 hours. Went into hospital next day because I couldnt breath and got out November 7 . They called it "an exacerbation." I was put on oxygen 24/7.
Since then I have had bronchitis. I thought I had pneumonia! Took few rounds of antibiotics. First Doxycyclan, then Azithromyocin. Been feeling like "something" is trying to put me out of commission?
I quit smoking over 4 weeks ago. Been using Chantix for 3 or more months now and am now weaning myself off them using 1/2 pill twice a day. I also go to Pulmonary Rehab Monday and Thursday. I have not needed any oxygen the past 4 weeks because the levels have been up over 93. (I have an oximeter and monitor it constantly). My Primary doctor recently told me to at least use the oxygen during sleep since I cannot monitor it then.
Suddenly over the weekend, I now need the oxygen 24/7? My oxygen goes to 87-88 without it. I noticed a few low readings on Friday. Saturday morning got up, went to the bathroom, and thought I might not make it back to living room and I started up my concentrator and put the end of cannula in my nostril.
What happened? Why would this happen?I didn't even go to the casino! Is it common? Isn't that what an exacerabation is?
I'm confused, scared and don't know where I stand in the getting better process? I live by myself which, to me makes everything way worse.
An exacerbation is a worsening of your condition which can be caused by irritant such as smoke, pollution, chemicals, perfume etc or it can be caused by infection or a change in the weather conditions. It may mean that you need your condition & your oxygen to be re-assed. Have you been referred to Pulmonary Rehabilitation? This would help you to have a better understanding of how best to manage your condition.
Well done for quitting smoking
Best Wishes
Jo :-).
thanks, jojam, have got new oxygen assessment inFebruary.
did my breathing checks,last week B.P. perfect, fev 1 up a bit, all others very stable. gone through xmas, n/year and my birthday without any infection. very pleased. duggie.
Evening.
The others are right if you have a flair up it can use a bit extra oxygen while your recovering, I know I do. But speak to your respiratory nurse.
Kim xxx
Hi Dugy& welcome 😀Do take note of the good advice you've been given xx
I hope you are feeling better. I have just had a really bad episode as well. I wonder what triggers it, do you have any idea?
I am on Oxygen 15/24 but if I am going out I use it for longer.......not to help my breathing more as a security blanket! My respiratory nurse told me that longer is not harmful but less is. Oxygen does not help your breathing but protects your organs from damage by too little oxygen, but if it helps you feel better there is no harm, but as the others have said exercise is the key to building up your stamina again. Keep smiling
Carole x
Thank you ,friends, for the advice . I will get in touch with my nurse asap. Many thanks also for all the encouragement. Yes, I have been worrying. Hope for improevment. lots of love to all, and THANKS! dugy.
Hi Dugy,
I am sorry to hear that you have had a flare up and now feel that you need more Oxygen. What others have said is right, especially Carole as lack of oxygen in your blood is harmful for your organs.
I would also say that you should ask your Oxygen team to check you arterial oxygen and also a walking test. Furthermore, ask your GP to refer you to the Pulmonary Rehabilitation Programme where under the guidance of a Physiotherapist and a Respiratory nurse you do exercises and education and this will help you as getting to know about your condition and limitation will help you and give you confidence.
All the best.
Peter
Hi Dugy, firstly a welcome to the forum, i look forward to seeing your posts.
i can only give you my experience,and in my own opinion.
although i am now on oxygen 24--7, there was a time i was only prescribed oxygen at night ,it then went to 17 hours, then 24 hours.
At this time i had similar experiences as yourself, flare ups, exacerbations, infections etc.
Again at this time i asked my hospital consultant, the same question,
His answer was, use it whenever you think you need it. This was the answer of my own consultant, to me.
It was at this time he told me to get an oxymeter [you can get these fairly cheap ] just to keep an eye on my oxygen levels. But not to depend on that reading completely, only if it was dangerously low. [a blood arterial test gives a truer picture,]
My personal advice would be use it if you feel you need it, but try phone your hospital consultant , explain this to him or her, and ask the same question,
The oxygen levels [in my opinion] should be over 89,at least, [they allow folks with copd a reading between 88, and 92]
But as this oxygen we are prescribed, is both, to help your breathing, but more importantly to protect the vital organs, i,e, heart etc.
I hope you manage to contact your consultant, and get the answers you need.
i do hope you feel better soon,
kindest regards
jimmy
All I can speak from is my own experience; at one point, right after my pulmonary collapse over 3 years ago, I wore my tank all the time and slept with my concentrator running all night. After a while, I stopped the concentrator completely after discovering I felt worse in the morning after using it.
Gradually, I stopped using my tank to the point that I never strap it on at all.
I get breathless, but stop whatever I'm doing and pause for a bit until I catch up and then start again. The need to pause is becoming less and less.
I'm never gonna run the 4 min. mile but I never did that anyway but the more I become less dependent on external aids such as the concentrator and portable tank, the more my body stretches to take over its rightful work of keeping things going. A couple of weeks ago, my lung guy even took me off my evening dose of Symbicort, though I still take the morning snort.
I find getting out and walking for just a bit in the bracing cold air quite refreshing and am about to do so now.
Make your body do a bit more of the work and you'll be glad for the effort. It's not easy but, ultimately, it's worth it.
thank you all,once again. wish I had joined in chat long time ago, guess I was self conscious. not any more! I have been diagnosed for 12+yrs and on O2 4l/m for over 1yr. got a portable concentrator recently and used it when driving. no problems. then since my last flare up I think I've lost a lot of confidence. panic, mostly, I think.
when it comes to advice a spoonful from a fellow sufferer is surely better than a book full of pure theory.theorists seldom know the fears and worries of the night.
I do sound a miserable old ###. I'm not really.
I have taken your advice, spoken to my nurse and arranged an appointment. she also said to try to reduce O2 use but not to worry . so I will do what all good little boys do, OBEY NURSE.
Will try to keep you posted on improvements,
lots of love,
dugy.
I was told oxygen not to help my breathing it was to keep my organs safe.
Dont know what I did there, sorry to hear you have been so poorly Dugy, as I said when I was on oxygen I was told it wasn't to help my breathing but to keep organs oxygenated. I would see your doctor or resp nurse you may need done more antibiotics and steroids. Take care
many thanks for kind advice. have been in touch with breathing nurse and arranged appointments. since first airing my problems I have definitely improved (as a result of all the kind and encouraging comments) hope improving continues many thanks, once again. let me wish all of you, kind people, a wonderful CHRISTMAS and a miraculous New Year. lots of love,
Dugy
Oxygen
Too much mucos...help!
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