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AMBULATORY OXYGEN FOR THOSE OF US WHO ARE RETAINERS

11 years ago•18 Replies

Hi everyone, having seen the post below about ambulatory oxygen, I am wondering how many of you have been told you are a retainer but have still managed to get the ambulatory oxygen. How did you find a consultant willing to prescribe it, was it simple or did you have to fight for it? I know they want to leave it as long as possible but things are just getting silly now, can barely walk to the kitchen to make a cuppa without having to rest for a good whilst before I can even get the kettle on, and kitchen is only the the next room. I'd be grateful for your experiences and advice. Thanks. Andy

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18 Replies

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stone-UK11 years ago

Oxygen will not resolve breathlessness, it only used to maintain oxygen levels, either at rest,

LTOT or when excercising ambulatory ,

From my understanding if you are a co2 retainer, oxygen can cause more harm than good, leading to coma or even death?

carolg1• in reply tostone-UK7 years ago

Hi stone, hope you don't mind me asking a question, I've been on oxygen for 4 years 2L up to 15 hrs per day , how do I know if I'm a retainer or not because tbh I've certainly not improved any since being on it , if anything I've developed some terrible mucus probs but when I question or make ref to my consultant he doesn't really answer me as they sometimes don't ! , I can breath in fairly easily but can't breath out very good, thanks carol xx

stone-UK• in reply tocarolg17 years ago

Long term oxygen therapy is to keep you blood oxygenated to protect your major organs. You may not notice any major improvement.

You can develop a mucus problem later on. There is medication to help thin the mucus, drinking plenty of fluids will also help.

As for you main question, the only reliable test is a ABG arterial blood gases test.This is taking a blood sample from you wrist, usually done at hospital.

Have you not been re-assessed in four years?

I only use Ambulitory oxygen therapy, and have review with the oxygen team annually.

I would speak direct to the oxygen team at your local hospital, it seems you may have dropped through a crack in the system.

carolg1• in reply tostone-UK7 years ago

Thank you stone I will xx

11 years ago

Andy, I would be extremely surprised if you find ANY Consultant willing to prescribe you for oxygen if you are a retainer.

It would be too dangerous for you. Please read up about this - you will see the reasons why oxygen is no good for retainers.

Thérèse

andymb11 years ago

Hi, to both of you and thanks for your comments. But there were one or two people here a couple of weeks ago said on someone else's post that you can have ambulatory oxygen if you're a retainer, only a low level though, and how much it helped them. I saved one of them, but not the title of the original topic and not the name of the poster, only know it was Jan. Idiot I am!

Here's what it said:-

"I have COPD, I'm a CO2 retainer and I'm on oxygen, so your husband is wrong to think he cannot have oxygen at all. The levels have to be assessed carefully as too much oxygen would be counter productive, but I do think it is worth finding out about.

I agree with everything Toci says. There's no reason why you shouldn't share your concerns with your husband's nurses. I also agree that he needs to fight a little, but I know that tiredness feeling too. Maybe you could ask about treatment for the CO2 retention. I have a BiPap machine which I use overnight and it has worked wonders for me.

Good luck whatever you decide to do, Jan "

Andy

jabber• in reply toandymb11 years ago

Hi Andy, that was me.

......... Now I’m going to go on a bit. Skip to final paragraph if you’re in a hurry!

I was prescribed oxygen nearly 6 years ago after a stay in hospital preceded by a dramatic entrance into icu. My asthma was suddenly COPD! Bit of a shock all round. Anyway I was initially on 2lpm for at least 15 hours a day. They sent me home still breathless and very weak, but improving slowly we thought.

After some months I started getting weaker and more tired again. I voluntarily gave up driving because my legs felt so jelly like sometimes. We bought a wheelchair – we’d already installed a stairlift. My consultant in Dorchester started talking about the BiPap – I had no idea what it was. But off we went to Southampton respiratory department where they perform miracles it seems. I think it was then we heard more about CO2 retention. My CO2 levels were very high indeed, so they gave me the BiPap with face mask, set the levels, told me to increase the oxygen to 4lpm overnight and said come back next week. The face mask was uncomfortable but I’ll try anything that might help. We went back to Southampton a week later, by which time I was already feeling stronger, and my CO2 levels had dropped significantly, which explained the improvement.

Things have continued to get better and 6 years on my kids and husband have just about forgotten the trauma of being summoned to my Intensive Care bedside. I started driving again within a couple of months because I felt so much stronger. I still see my consultant every 6 months, and go back to Southampton yearly. Over the time they dropped my oxygen down till it was only 1lpm day and night, and now I don’t have oxygen at all overnight. Having tried a few different types, I’ve got used to the face mask you have to wear. Any discomfort is more than worth it, and I sleep well.

Ok that’s the story - thought I’d give a bit of my background to make it clear that there was never any question of not giving me oxygen. I needed it because my sats were too low, and I certainly didn’t have to fight for it. I carry a CO2 Retainer medic alert type card now, explaining how much oxygen it’s safe to give me in an emergency. Maybe I’ve been lucky with my consultant. I hope you have luck with yours. You might not need oxygen - that depends on your sats - but if you are a retainer the BiPap could work wonders as it did for me.

All the very best, Jan

joyce741• in reply tojabber10 years ago

Jabber I'm the same as you only on a v-pap over night and a normal concentrator during the day which is on 1 ltr when I go out I'm on liquid oxygen 2 ltrs but when I'm walking or doing any exercise I have to turn it up to 3 or 4 ltrs its a nuisance as I forget to turn it up at times,

carolg1• in reply tojabber7 years ago

Hi Jan, I've read your post and some of what you have said strikes home to me I've been on oxygen 3/4years now and I can say I have deteriorated in many ways since ! How do I know if I'm a co2 retainer ? Xx thanks for reading carol xx

11 years ago

Hi Andy I am sorry I can't give you a definitive but I would advise you ring the blf helpline in the morning click on the red balloon they will be able to give you the information you need. Good luck TAD xx

andymb11 years ago

Thanks Tadaw for your advice. Andy

eepee811 years ago

I too am a retainer and have a story like Jan. I was admitted to ICU in Jan 2010 and was discharged June 2010. I had complete respiratory failure, was given a tracheostomy. I was on oxygen set at 4lpm 24/7. After being weaned off the tracheostomy I was sent home with a Nippy (BiPap) machine. Two months later I went back for over night stay in hospital and they changed my oxygen to 2lpm 24/7. They changed my machine to a smaller VPAP machine and I haven't looked back since. I too have an oxygen alert card to show medics what is the safe limit for me. Eileen

Catnip11 years ago

I am a CO2 retainer too, and was prescribed ambulatory oxygen by a state of the art respiratory unit's physio. I have it set on 4 litres per minute and haven't had any problems at all. I do carry a small warning card, in case anyone tries to put me onto too high a dosage for too long.

I have had problems with airlines, who seem to think that 4 lpm at ground level converts to 8 lpm in the air; I keep asking how many corpses they disembark, but nobody seems to see why I ask the question... I only need 2 lpm on flights but I wouldn't even try to take a flight without a prior "fitness to fly" test at my local hospital.

So -- yes, you can use prescribed oxygen even if you are a CO2 retainer, but be aware that you shouldn't "sit" on the oxygen when you're not moving about, and be aware that if you aren't breathing normally, it might be time to turn off the supply!

andymb11 years ago

Am really sorry to have taken so long to get back to you jabber and eepee8, I had internet probs yest. Thank you so much for your replies, and yours too Catnip. Am feeling a bit more hopeful now I have this info. This is what I love about this site, real information from real people who have actually experienced the problems we are worried about. I am seeing my consultant next month and now have some questions to ask thanks to you all. I will be saving this post properly this time! Many thanks to you all. Andy

jabber11 years ago

You're welcome Andy. It's great to be able to use our experiences to help the next person along to a speedier resolution of theirs. Just shout if you need more information. Jan

andymb• in reply tojabber11 years ago

Cheers jabber, very kind of you. Andy

2malinka9 years ago

I am a CO2 retainer and was prescribed 1/2 litre oxygen minimum of 15 hours daily. Maybe it is because I have severe COPD?

Regards

Malinka

undine• in reply to2malinka7 years ago

I am the same 2malinka on half litre oxygen but for 24 hours daily, although they are not sure if I am a retainer or not as after over 12 attempts by 5 different people and 3 different appointment they cannot seem to be able to get any blood from my arteries which is a pain in more ways than one ha,ha - and yes I too have severe COPD take care xx

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