living with oxygen

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Hi I've been told I need long term oxygen cos my levels are low due to my curvature of spine restricting my lungs is there anyone else out there living with oxygen full time and how do you cope please

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    Hello, I have been using oxygen 24/7 (level 2), since Sept 2013. I really never complain, except some days, the nasal cannula or the long oxygen tubing inside my house, can sometimes trip me or someone else..lol. 

    I am actually grateful to be able to find a way to give extra oxygen to my body, especially my heart, and all other organs. I went through six month's without it, before they found out that I had something wrong with my lungs. During those six months, my oxygen level was severely dangerously low, and my heart became effected by it, and I ended up having Congestive Heart Failure, and this is how they found out that my lungs was not providing enough oxygen to my heart, which caused the failure. So, I am thankful and grateful for having oxygen, because I may not be here today due having it now. 

    I always try to keep my oxygen level at level 2, and only turn it up to level 3 only when I do any exertions such as exercise. It can also be dangerous to have it at a higher level for a longer amount of time (due to CO2 buildup which can become toxic and backing into blood). I never use the large tanks, but specially requested my oxygen company to deliver to me the smaller and portable size tanks. I now carry my portable tank inside a should harness. The only one's who usually give me attitude are children, but only a few. They are actually cute and understandable though..lol. Also, though I have never had it happen yet, but if anyone says something ignorant to me regarding my handicap, I smile and walk on, because I always know that they are the one's who has the problem, and a bigger problem while at it..lol! 

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    • Posted

      Hi Brenda thanks for your reply it's nice to hear from someone who uses oxygen I was brought a portable machine for over the weekend and a travel concentrator today but I find it a bit big and heavy I know it's on a trolley but can't see myself pulling it round town with me what sort have you got
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    • Posted

      Hi Jackie, thank you for responding to my previous comment. My oxygen tanks are all small size ones . 

      I have to use a devise called, Pulse Oxygen Conserving Devise,' with the small tanks. The company will already have the devises attached, but must order the devise when ordering the tanks, since some people don't care for the pulse action of this devise. It has never bothered me, and I love conserving the oxygen. The pulse oxygen conserving device creates spurts of oxygen, for example, whenever I breath, I get a spurt of oxygen. By getting a spurt of oxygen whenever I breathe in my nose, this way, since the tanks are so small, the oxygen gets preserved inside the smaller tank. The devise makes oxygen last longer.

      Also, It sounds like you are using the "E" size tank, and they are very large, in my opinion. I use to use the same size large tank that has to be rolled around on wheels, due to large size. No way can it be carried..lol! It was called a, E tank, and I will no longer use it, because the smaller size (with the conserving devise) has spoiled me (in a good way).

      The smaller tank that I use are the  "E" (or M-6) tanks, and they are about 12 inches in height, and is only about 3-4 inches diameter. This is the smaller tank that I always use a pulse oxygen conserving device with, since it is so small, and must conserve the oxygen, but it lasts for about 2 hours using level 2 lpm, due to it not being a continuous flow. Some people do not like the conserving devices, because they claim they feel suffocation, but I LOVED it. I feel most of the oxygen gets wasted, if not using a conserving device, and I feel like I am getting LOTS of oxygen with the devise also...lol. 

      I am presently wanting to shop for and purchase one of the portable oxygen concentrators. I want to be able to travel, and go places, which requires more oxygen, due to having to have oxygen outside my house, for longer periods of time. The portable oxygen concentrator's allow up to 12 hour periods, I believe, or depends on brands. I want one that goes up higher lpm's too, just in case I need higher lpm's down the road.

      I highly recommend the portable oxygen concentrator, and also, the small portable oxygen tanks. I am not certain if you will need tanks of oxygen if you have a portable one, but there again, I do not presently own a portable oxygen concentrator yet, Glad to have helped! 

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  • Posted

    Hi Jackie. I am on level 1 oxygen 24/7 but increase it to level 2 when exercising or showering etc. I have an oxygen concentrator with the tube connected (I call it the green snake LOL). However I also have a portable concentrator which enables me to travel on ships and planes. Very handy for holidays ! Battery lasts 12 hours also! You will soon get used to it my friend. Unfortunately I cannot comment about the oxygen tanks because I don't use them. I am in Brisbane Australia so things may be a bit different here.

    Take care

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    • Posted

      HinTony

      it sounds like you have a good quality portable oxygen concentrator that lasts 12 hours. Could you please tell us where you bought it from, online, name whatever you know about it.

      we have been toying with the idea of buying a portable for my husband to use while travelling, but we have not got any help with choosing one at all

      so any ideas would be much appreciated. 

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    • Posted

      Hi Jonah. I have just taken the plunge and bought one - hole left in pocket very large - because although they are available in UK on NHS, one has to give up all the oxygen tanks etc which I need for occasional but very necessary use at night when silent operation is crucial to keep the marital peace.

      First off, you will have to do your own research because NHS and BLF websites were of little help or featured suppliers no longer in business..

      Won't mention brands here for fear of upsetting the Moderator, not to mention the suppliers !

      Started with "POCs" a couple of years ago for holidays by air by hiring one from a very friendly company in Birmingham. It worked very well - pulse and continuous flow - but being heavy and bulky it was supplied with a trolley which sorely limited its mobile usability. Crunch came - literally - when the thing fell off its trolley while we were boarding a transfer coach and crushed my wife's foot.

      Much smaller and eminently more portable units are now available which also offer longer battery life but the drawback is that they can only do pulse to which not everyone is suited.

      This July I hired a max 3 liters/minute model for a holiday abroad. Looked good on the website but couldn't find any user reviews. Small wonder because, on receipt, the abysmal design was immediately evident. There was nowhere to keep the canular (common problem) but the farcical part was that it needed great dexterity, if not 3 hands, to get it started because the cannular nozzle was immediately in front of an impossibly awkward latch to open the cover over the buttons. Not what one needs when short of breath ! Hence it went straight back after the hire !

      A Mancunian company allowed me to try out a competing model for a weekend. Although a tad heavier, what a difference in design. This one has the cannular nozzle on the side of the top control panel and a decent carry handle as well as shoulder strap but most important of all, it worked well,significantly increasing the distance I could walk or work without a stop for breath. Hence I bought one of those - new rather than 2nd hand or ex demo as there was almost no difference in price,

      Hope that this helps ! 

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    • Posted

      Thanks but what I need is someone who like me is struggling coming to terms with living with oxygen and how normal a life can you lead my oxygen supplier came today but has ran out of travel concentrators when I do start do you think they're the best sort to have
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    • Posted

      Hi Tony, thank you for reminding me about the portable oxygen concentrator's! I love the portable oxygen concentrators. With our oxygen companies in the USA, they always want to start all their patient's out using tanks, but they also rent them for travel purposes. As for me, I would Love to purchase one of them, and have done some research, but wonder which is a good one to purchase. Do you have any idea, or, any information to share regarding a very good one to purchase? Thank you! 
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    • Posted

      Hi Jackie,

      I think I know what you are talking about, about coping with having to use Oxygen 24/7. I'm 50 years old, I had a pretty active lifestyle prior to a motorcycle accident 2 years ago that left me with a punctured lung and chest tube from numerous broken ribs. I had been a pack a day smoker and they told me I had copd. I was on a ventilator for 3 days after the accident (I also had an incision from breastbone to pubic bone from surgery to remove my spleen, also from my broken ribs) and they were finally able to ween me off the ventilator to Oxygen, first 6liters then finally down to 3liters in 10 days when I was finally able to leave the hospital.....what a struggle it has been! For a year I struggled to heal and get back to my life but my head got foggier and foggier until one day I couldn't even remember how to set my table for dinner! I had my husband take me to the hospital and they found my carbon dioxide had creeped up to a dangerous 97% and I was on the verge of slipping into a coma. I ended up going through tests and I now have a Bi-pap machine that i Have to sleep with at night to keep the CO2 down.....it's not easy, I feel robbed of my life. Until I was able to get a portable concentrator I was a prisoner of my own home. My husband came and went and I would cry because we used to do everything together and I felt like his life went on without me even though we were both in the same accident he suffered minor injuries. It's hard, I go out in public and everybody looks at me with my oxygen, I would much rather people just ask me about it as opposed to staring. It's hard to come to terms with, I have been struggling for 2 years. Only recently have I finally been able to do some of the things I used to but there are other things I will never be able to do again....I have a airsep portable concentrator, but I would much rather have a inogene one, but my insurance won't cover that one. I have to take an extra battery with me if I'm going to be out for a long period of time but at least I don't have to worry about carrying tanks. it can recharge in my car or with a power cord. But there is a certain loss of freedom to always be connected to a "tether cord of life" so to speak. I am thankful to be alive and I try not to be depressed so I read alot of self help books...lol. I hope it helps to at least know you are not the only one. Take Care, Erika

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    • Posted

      Thank you for your reply I'm also on cap machine for carbon dioxide being high but now I need oxygen 24/7 but I'm not getting sorted with a good easy travel oxygen I was looking to buy one and the smallest I've seen is the one you've got airsep but my respiratory nurse was not very helpful about flow rate saying she cannot give me permission to use oxygen what she hasn't given me a prescription for but she's quiet happy for me to use a cylinder which I can't carry did you have to buy yours or did you get it on NHS
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    • Posted

      I'm in the States, and I got a prescription from my doctor for a portable....the airsep gives pulse oxygen, meaning it will give you a spurt of oxygen everytime you breath in....the cylinders offer a more continuous flow. I had to do a test to see if I was a candidate for the pulse flow because some people are not. I'm not sure how different your health care system is than ours, although i've heard its so much better! My insurance paid for mine and I got it though my home care service that supplys my oxygen. I hope this helps, If you have a home care service that brings your oxygen supplies, they would have to already have a prescription from your doctor for that, so ask if they will ask your doctor for a prescription for a portable one, good luck!
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    • Posted

      Hi could you tell me when you bought your small concentrator did your specialist help with info cos I've been given a tank which is too heavy and bulky so I'm looking to buy one but I was unsure about flow rate equivalent so I rang my nurse but she was adamant she couldn't give me any help cos it's not from the oxygen firm they use so I'm stuck I can't get out with the cylinder I've got and I'm not able to buy one did you have any bother I use 1 ltr per min
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    • Posted

      The best one is the Inogen One.  I don't have one because I am on Medicare and they do not cover it in Ohio.  I hate carrying the tanks around because I also have osteoarthritis in my shoulder and it is painful having to carry the C sized tank.  I was diagnosed with COPD about 15 yrs. ago and functioned just fine until last year when I got pneumonia.  I've been using Advair since diagnosis which actually makes you more vulnerable to pneumonia.  I had the very serious case which put me in critical care for 10 days.  I've been on oxygen since.  There seems to be a misunderstanding about concentrators (electric or battery operated machines that pull and concentrate Oxygen from the surrounding air) and tanks which hold concentrated oxygen and eventually empty.  The electric concentrators can run continuously, but also cause a high electric bill, except with the Inogen One which is far more energy efficient.  They also have battery-operated portable ones which are much lighter than the tanks.

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