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skhill
Member

USA
220 Posts

Posted - Feb 05 2019 :  11:15:29 AM  Show Profile  Reply with Quote
Had to go to hospital this past early Sunday morning with 02 level at 76. I was plenty scared too. I have never had to need 02 so when they put that mask on me after about a minute I felt like I had won a lottery. It felt so good to be able to breathe. I had been sick since last Wednesday starting out with a sore throat the worst that I can remember in such a long time, then turned to my chest where it hurt and ached to cough then in ER at around 1Am on Sunday. They admitted me and started the Levalbuterol breathing treatments every 4 hours. I was released late yesterday evening with 02 now because at rest my o2 would drop down to at least 88 which they said qualifies for 02. Although the RT said I would only need 1 liter I have been on almost 2 since the home concentrator finally arrived late last night. What a big difference with moving it to 2. IT helped a lot. Please forgive me if I am not using the right terms but this is so new to me. I went from using nothing for my COPD to now being on O2 all the time. I still have a lot of mucus to try and get up and now the Levalbuterol is giving me chest pains. I feel like I am at a catch 22 here because I need it to help break up the mucus to cough it up unless there is something else I can use??? I also have the Devilbiss Drive model for my concentrator and the Inogen G3 portable. Are these good ones? I am not asking for a pity party here but what a shock to go to this stage all of a sudden. I was not prepared for this at all. I am also on Metoprolol Tartrate for my heart and blood pressure that I was put on about 3 months ago. Any suggestions and help is much appreciated. I am also going to start going to Pulmo rehab after I get better.

Sandy9s
Member

USA
472 Posts

Posted - Feb 05 2019 :  12:38:59 PM  Show Profile  Reply with Quote
Sounds to me like you have a virus -- which will have to run its course with the help of the tools you have available.

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jmrommes
Contributing Member

1991 Posts

Posted - Feb 05 2019 :  4:24:37 PM  Show Profile  Reply with Quote
You have a bug and you're on all the right things to help you get over it. I would suggest you get some Mucinex to help you get the junk out. Drinking lots of water will help, too. Some people drink hot tea with a little honey. Anything that will get the mucous moving, will help, so any old wives tales that work for you are in order as well.

The DeVilbiss and the Inogen G3 are both fine machines and ought to work for you. The Inogen is pulse dose only, so be prepared for that and try it at home before you head out and about with it. It takes some practice to figure out how the pulse dose works and be sure you have a strong enough inhale to trigger it before you take off with it. If you have an oximeter, use it to be sure you have the Inogen set where it will keep you oxygenated. Remember what you've read on this board: the settings on the Inogen are NOT equal to liters per minute on the DeVilbiss. So be sure you know what you need to have the Inogen set on to keep yourself well oxygenated when you're moving. Use it with the stationary one as well. You'll know where you're most comfortable.

Exercise not only lets me live, it enables me to have a life.
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skhill
Member

USA
220 Posts

Posted - Feb 05 2019 :  6:20:46 PM  Show Profile  Reply with Quote
Thank you Jean. Yes I tried the Inogen G3 last night and was surprised at how it works. I did wonder if when I could or didn't have enough inhale to get that blast of 02 it gives which that was a surprise as well. I wasn't prepared for such a short quick puff. It determines the puff for me no matter how long I inhale. I don't think I really care for that. I was told I was having a COPD exacerbation. Unfortunately the Levelbuterol is giving me chest pains. I called my PC for some Guaifenesin liquid so I can start low on dose to make sure I can tolerate it. I hate being so sensitive to medications. I have been in a catch 22 situations too many times with my sensitivities. I am hoping I can get rid of all this mucus and I wont need the 02 all the time. What a big difference to get used to in such a short time. I am only 62 next month 63 and I hate to think I will be on 02 all the time or is this normal for COPD?
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Diane545
Member

USA
318 Posts

Posted - Feb 05 2019 :  7:37:56 PM  Show Profile  Reply with Quote
I remember my first exasperation and how scary it was. I was put on 02 and meds. I was so depressed cause it all happened so fast. It took forever to bounce back but I did. Once I got rid of the bug I was able to use my 02 for exertion only. Then eventually had a sleep test and was told to use while sleeping. You might be able to cut back when you get over your exasperation. I gave a G3 and really like it. I do think when your recovering you might need continuous flow, I did. Just give yourself time to recover and don't overdue. After you get on your feet you should look into rehab. They sent me and I gave learned so much. Especially how to breathe when SOB hapoens.
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jmrommes
Contributing Member

1991 Posts

Posted - Feb 05 2019 :  8:49:12 PM  Show Profile  Reply with Quote
You are having an exacerbation. It's pretty normal, just damned uncomfortable. You'll find that it will take you quite a while to recover, too, so give it time. If you had a regular exercise routine before the exacerbation, give it some time and then get back to it. I would take everything back to square one; slow way down, all resistance back to 0, lighter weights, etc. If you start at the beginning, you'll be able to track progress, however slowly.

Use your O2 for exercise. If you really don't like the Inogen, ask for tanks. You can use them continuous flow if you must, but you can also program the conservers for pulse. I personally prefer pulse for anything other than sleep, because I know that I'm actually getting O2. On continuous, I can never tell. It all depends on what you can get used to. As the G3 gets used to your breathing patterns, it adapts a bit....not much, but a bit. That's why I don't like any POC for exercise. At least the conservers breathe when you tell them to!

Exercise not only lets me live, it enables me to have a life.
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skhill
Member

USA
220 Posts

Posted - Feb 05 2019 :  9:28:08 PM  Show Profile  Reply with Quote
Diane yes I was very scared when I went to the hospital and when my o2 was in the 70's. I have never felt this bad in years. I have never been this sob either. All the stories I have read on here and when the members tell their ages and I am 62 I think oh good I have quite a few years before I will get that bad to need 02. Well here it is and I was not prepared and yes very depressed about it. The friend who lets me live here got sick on a Tuesday and the next day so was I he is well now and has been for a few days but me not so much. I see things that need to get done and want to them but I just cant right now. When Jean said to take everything slow no problem I am still very weak. I didn't really eat or drink for 4 days got dehydrated as well. I know I have a lot of healing to do and I am not known for having patience. I am eager to go to rehab after I am healed and after the flu and icky season is over. Thanks to all on here for sharing their advice and knowledge. This site is so helpful to us newbies who are so scared of this disease and what it can do. I know I am. I can tell you I wish I had never smoked. I quit about 9 years ago and don't miss it at all. I have turned my 02 down to 1.5 which is ok until I get up and move around then my 02 drops but I just sit and it rises back up. My ribs are sore from coughing so much and so hard. I cant wait to get this crap out my lungs. I have coughed so much it makes me want to vomit or gag. Again thanks for all the knowledge you all share. We all appreciate the support.
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jmrommes
Contributing Member

1991 Posts

Posted - Feb 06 2019 :  10:12:39 AM  Show Profile  Reply with Quote
Turning your O2 down while you're sitting is fine, as long as your O2 sats are good (well above 90; like 95). But leaving it there when you get up to move isn't helpful. You're trying to do things in spite of your O2 needs. Instead, use that O2 at levels that get your saturation well into the 90s so you can get stronger, do more things for longer and feel better, not only about yourself, but also physically.

In other words, USE the O2 to help you get stronger and maybe, get off the O2. In order to get off the O2, you have to be stronger. You get stronger by using the O2 so you can do more. The more you do the stronger you get. The stronger you get the more you can do with less O2. Strong, well toned muscles use a lot less O2 to do a whole lot more than weak flabby ones. You don't get stronger by keeping the O2 as low as possible and then sitting to catch your breath. You do it by turning the O2 up and doing more for longer. Use this opportunity you have; don't waste it! You'll feel a whole lot better a whole lot faster. Guaranteed.

Exercise not only lets me live, it enables me to have a life.
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skhill
Member

USA
220 Posts

Posted - Feb 06 2019 :  7:31:49 PM  Show Profile  Reply with Quote
When it is on 2 my sats are at 94 sitting. Is this normal or at least ok? I am not being able to nebulize as often as I should and I am afraid that will make it is so much harder to get the mucus out or at least take a lot a lot longer. Yes I will pick up some guifenesin tomorrow after my doctors appointment. I took a shower today and it was a little difficult but I know I will get used to it. Is it safe to use a hair blow dryer while wearing my 02? Sorry if I ask some dumb questions but I want to make sure I do it all right and don't want to risk anything.

Edited by - skhill on Feb 06 2019 7:34:06 PM
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jmrommes
Contributing Member

1991 Posts

Posted - Feb 06 2019 :  8:55:42 PM  Show Profile  Reply with Quote
For O2 in the home, you really need to use common sense. Remember that O2 doesn't burn, it feeds a fire. What's dangerous is an open flame, so use your head. If you cook with gas, you need to make sure your cannula doesn't swing across a burner. Many people who cook with gas just wear the cannula down their back. Unless your hair dryer throws sparks that might catch something in the bathroom on fire, there's no problem using it or any other similar device like a curling iron or an iron for that matter. With those hot things, you want to be sure the cannula isn't in the way because they'll melt (and make a real mess on whatever melts them). Just think about what you're doing and take reasonable precautions. No reason not to use all your electric things, unless the wiring is from the 1940s.

O2 sats at 94 sitting are fine. They should also be 94-95 when you're up and moving around. That will undoubtedly take more O2, so don't be afraid to use it. You won't get stronger unless you can move long and hard; use the O2 to help you do that.

Exercise not only lets me live, it enables me to have a life.
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skhill
Member

USA
220 Posts

Posted - Feb 06 2019 :  10:14:18 PM  Show Profile  Reply with Quote
Thanks Jean! ! ! !
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Sandy9s
Member

USA
472 Posts

Posted - Feb 06 2019 :  11:53:02 PM  Show Profile  Reply with Quote
I wonder why the old thinking was that if you started using oxygen, you will forever have to use it. As if it were a horrifying thing to do. And most of us also started by not wanting to use too much of the stuff. It might shoe how bad off we are? I have no idea why we thought this way. Using as much as we need to keep our sats in the 90ís should always be the goal. No matter what number that takes! My regulator goes 1-8 and i use 3 to 4 while directing my chorus. 2 when sitting or sleeping. 4 when cooking inthe kitchen.
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skhill
Member

USA
220 Posts

Posted - Feb 07 2019 :  05:47:10 AM  Show Profile  Reply with Quote
Sandy for me it is was them telling me to be careful and not get too much 02 because that would be just as bad as not enough. This is my first time on 02 and not very well educated on it either. I will though and a lot is like Jean stated common sense. I admit I don't want to be on 02 yet but if I need it then so be it. I really am hoping to not have to have it all the time. Is that so bad to not want to have to use 02 all the time? I mean I would think that would be normal for the first time to think maybe you wont need it all the time not yet anyway. For most of you who have been on 02 for many years this is your way of life and you are already adjusted and pros at it. I remember thinking of how I will have to adjust to 02 being in the house with 2 dogs running around and so many other things. When in fact it really is not too bad but let me tell you the back of my ears are really sore. lol The 02 is effecting my sinuses too. My nose is so darn dry. I noticed they had a bottle of saline hooked up to help with humidity or moisture to my 02 in the hospital and was wondering if I can have that at home as well? Wow I wish I had gotten a concentrator that went up to 8 mine goes to 5. So I understand that when I need more 02 use it that it what it is here for.
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jmrommes
Contributing Member

1991 Posts

Posted - Feb 07 2019 :  11:09:40 AM  Show Profile  Reply with Quote
Getting off O2 is certainly not an unreasonable wish. O2 does make life more complicated. I was first on O2 back in 2000 and was on it 24/7 for several years. I used my O2 to help me start and then maintain a very aggressive diet and exercise program which eventually allowed me to get off O2 completely for eight years. I asked to go on the O2 again when I realized that I couldn't maintain my O2 sats adequately during exercise. First it was just during exercise and for sleep, and then I knew I needed O2 to fly. Over the last couple of years, I've finally gotten to the point where I use it for most activity outside my apartment.

That business about getting too much O2 is really so much malarkey. It's called the "hypoxic drive theory" and it's been widely debunked. No top pulmonologist prescribes to it; generally it's only people who do not keep up with current research who talk about it and apparently still believe it. Here's where your oximeter is really your friend. If you are really sob and your O2 sats are right where they should be in the mid-90s, DO NOT turn your O2 up. What's happening is that you're trapping air and have no room for more O2; that's why you're sob. The fix is to slow down or stop, and PLB. That will blow off the stale air and you won't be sob any more. That air trapping thing happens to most of us at some point.

The last thing i want to point out is that you're confusing a conserver or regulator with a concentrator. Both the Inogen and DeVilbiss you have are concentrators: they manufacture O2 from room air using sieve beds. Stationary ones have settings 1 to 5; some go 1 to 10. Those settings equate to liters per minute (LPM). Settings on your Inogen also go to 5, but that DOES NOT equate to LPM; in fact, with the Inogen set at max, you're only getting a little over the equivalent of 1 LPM, spread out over 15 breaths per minute.

The conserver or regulator that Sandy is talking about goes on O2 tanks. Most of these devices can be used for continuous flow or pulse dose. I think she uses continuous flow. When I use tanks, or any O2 for that matter, I always use pulse dose, partly to conserve O2 so the tank lasts longer, but partly because I'm used to it and really miss the evidence that I'm actually getting O2.

The reason many people assume that once you're placed on O2 you're stuck with it is that is the experience of many people with COPD. What often happens is that we go merrily along until sometime in our late 50s or 60s we catch some bug that brings us to our knees, we're hospitalized, sometime in ICU and come out weak as kittens and on O2. Unless you are lucky and have a really good doc who knows exactly how to push your buttons to get you to do the hard things like exercise daily, quit smoking, lose weight, most people don't get enough better to get off the O2. Some might not anyway because the damage to the lungs is just too great, but many would if they made the effort.

I hope this helps.......

Exercise not only lets me live, it enables me to have a life.
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Sandy9s
Member

USA
472 Posts

Posted - Feb 07 2019 :  12:44:37 PM  Show Profile  Reply with Quote
This question is for Jean. You like Pulse Dose because they you know, for fact, that you are getting your oxygen. Curiously, that is the exact reason why I use Continuous Flow! (I agree that Pulse Dose would allow the tank to last longer.) But in Continuous Flow, isn't the oxygen which is going into my nose all the time actually going into my body all the time? Even when I am breathing through my mouth??? If it's not going into my head and body, then where would it be going? Therefore, I am POSITIVE that the oxygen is going into me.

In Pulse Dose, there is only a puff at some times. And because I am a mouth breather, I usually set off the alarm because the machine cannot detect me breathing. I wish I could use the Pulse Dose -- would save on replacing oxygen tanks as often.

Jean is correct. I have a Concentrator in my kitchen which is plugged into an outlet. It only goes to 5, and it is only a Continuous Flow. I also have a Regulator which I put onto my separate oxygen tanks which goes 1-8 Continuous. I have 2 of these (purchased on Amazon). I also have another Regulator which I have put onto a small "B" tank (regulator provided by Medicare which does either Pulse to 5........or 1-2 on Continuous Flow.)

I have 2 pull-along black bags on wheels. One carries a D tank. The other one carries 2 - C tanks, but I usually only put 1 C tank into it to make it lighter for me to throw around up curbs, up steps, down steps, into car, etc. etc. Then I have a little black carry bag (purchased on internet) to hold the "B" Tank -- I use this just to do some quick running around in the golf cart.

I am getting stronger because I am using 02 all of the time. I don't always have to use setting of 4 while making meals.......sometimes I forget while it's still set at 2-1/2 in the house and I am none the worse for wear! Also -- set at 2-1/2, I am hardly ever SOB while walking from here to there in my house........even taking showers now at the same 2-1/2 (rather than turning it up to 4 or 5 like I did several months ago!). When you feel stronger, you move about more quickly, thereby getting stronger, which makes you move about more quickly, thereby getting stronger, etc. etc. You get the picture!

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tsainta
Contributing Member

USA
1875 Posts

Posted - Feb 07 2019 :  2:50:30 PM  Show Profile  Reply with Quote
I'm with Sandy. To me, continuous flow is "fail safe." It's always there and I don't have to think about it. However, there is a definite inconvenience associated with the comparatively heavy amount of oxygen I have to lug around.

Tony-CA

Life is like a roll of toilet paper. The closer it gets to the end, the faster it goes.
--Andy Rooney
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jmrommes
Contributing Member

1991 Posts

Posted - Feb 07 2019 :  3:20:33 PM  Show Profile  Reply with Quote
Sandy, I wish I could say that you're getting O2 all the time on continuous. Not true. When you're not inhaling, it just goes into the atmosphere and essentially it's wasted. It doesn't build up in your nose and wait for the next inhale. What is true is that it is available all the time, no matter when you inhale. It's a gas; it dissipates. So you're not getting any more O2; it's just available all the time.

I know I'm getting O2 because I can feel and hear the pulse dose. I use a SmartDose conserver and it only gives me a pulse when I inhale. I have a good strong inhale and the SmartDose has a very sensitive sensor, so I rarely have a miss, though that's not entirely unheard of.

I'm a mouth breather, too, especially when I'm doing something, and I always trigger the sensor, including on my Inogen, so that's not an issue. It is something I learned to do, but it wasn't hard. If you're a mouth breather and you couldn't trigger the sensor with the cannula in your nose, how do you know that you're getting any O2 when you breath through your mouth? Unless you put the cannula in your mouth, you don't know.

Exercise not only lets me live, it enables me to have a life.
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Sandy9s
Member

USA
472 Posts

Posted - Feb 07 2019 :  5:44:45 PM  Show Profile  Reply with Quote
Good questions, Jean. I only know I am getting 02 in my body because the oximeter goes up. Without the 02, it stays pretty much in the high 80's much of the time........70's sometimes too!

I guess I have to "assume" that the 02 is going into my nose because that's where it's being directed all of the time on Continuous Flow. Once it enters my nose, I would assume that it would go down my throat...because that's where the water from the neti pot goes when I put the water into my nose! From there, the rest of my body just eats it up, I guess. I do not agree that unless I breathe, the 02 is going into the atmosphere.

But this will be my next "research" project! LOL

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skhill
Member

USA
220 Posts

Posted - Feb 09 2019 :  12:58:12 AM  Show Profile  Reply with Quote
Apria came out and set my 02 up for me and the 50 ft tubing I have is getting twisted up. DO they make some that does not do this and if so what is the name brand? How often are they supposed to be changed also? I have a few extra cannula tubing and that is it. I just found out that I am only renting this equipment. I never thought about all of this before. I guess it doesn't matter if I am renting it or not. I guess that is good since they are responsible for the up keep or if it konks out they have to replace it. I wonder if they are supposed to furnish me with all my tubing I need? The battery life in my Inogen G3 doesn't last long and I am not going to pay an additional $300 for a couple of more hours. WOnder what other one I can get to get at least 5 hours of life or do they make one?
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jmrommes
Contributing Member

1991 Posts

Posted - Feb 09 2019 :  11:34:19 AM  Show Profile  Reply with Quote
If you're on Medicare, you rent the equipment. You can see if you can find some Softhose tubing. Unfortunately, I think they've gone out of business. Some people put the tubing in the microwave and get it warmed up and then straighten it out and it doesn't tangle as much. Your provider is supposed to give you all the tubing you need, so if you need more, ask for it. They should deliver it or you can go pick it up. If you like your Inogen, see if your provider can help you with an additional battery. You might get the heavy duty one they make for Inogen; that will give you twice the time away from home if that's what you're looking for. Use the concentrator in your home and the Inogen for outside the home.

Exercise not only lets me live, it enables me to have a life.
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tsainta
Contributing Member

USA
1875 Posts

Posted - Feb 09 2019 :  1:32:50 PM  Show Profile  Reply with Quote
I put my tubing, wrapped in a towel, in the oven at 200 degrees or a little less for an hour. Then I take it out and, protecting my hands with towels, stretch the tubing as I straighten it out. The tubing no longer curls involuntarily, but the flow can be more easily cut off by a kink--although I haven't found that to be much of a problem.

Tony-CA

Life is like a roll of toilet paper. The closer it gets to the end, the faster it goes.
--Andy Rooney
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muddleaged
Member

USA
62 Posts

Posted - Feb 09 2019 :  2:33:54 PM  Show Profile  Reply with Quote
When I was asking my provider for more tubes, i mentioned that I wouldn't need to replace them so often if I didn't keep standing on them. They sent me "Salter GREEN Crush Resistant 3-Channel Oxygen Supply Tubing". Has not been kinking and this tube has been on for two months (Others were lasting a week or so.) Plus the green is more visible.
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Sandy9s
Member

USA
472 Posts

Posted - Feb 09 2019 :  3:14:50 PM  Show Profile  Reply with Quote
I purchase all of my soft hoses and cannulas w/various lengths of hoses from: www.myoxygen.net

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Diane545
Member

USA
318 Posts

Posted - Feb 10 2019 :  12:52:28 PM  Show Profile  Reply with Quote
I have been using a pulse for few years and seeems to supply what I need. The only time I use I continuous flow is at night and after exasperation. It takes me awhile to get back on my feet. I also enjoy the freedom it gives me without carrying heavy equipment. I think they have come a long ways with COPD. One is keep moving. My mom had emphysema and she pretty much sat on the couch with her oxygen. I feel she gave up and wonder if she had access to better 02 equipment maybe she would have went out more. I try get out everyday and do gym. Some days are better and I have down days but try push forward.
The long hose and kinking is a problem for me to. So far I haven't figured out a solution. I wish it was retractable.
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MDC
Member

431 Posts

Posted - Feb 17 2019 :  09:27:49 AM  Show Profile  Reply with Quote
After playing with methods I finally settled on a microwave to heat my tubes. I put a 20 ft and 10 foot in packages in microwave for 30 seconds then 15 seconds and wife and I take them out and stretch them. It works good for me.

Mike

Before you criticize someone, walk a mile in their shoes. That way youíre a mile away, and you have their shoes too.
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Gerry-FL
Member

USA
64 Posts

Posted - Feb 20 2019 :  8:52:54 PM  Show Profile  Reply with Quote
First off, sats are very individual and I don't think anyone can tell you what is good for you. Mine is around 91 or 92 sitting. With oxygen I can get it up to 94 eventually. YMMV As for oxygen poisoning, someone has already call BS on that one quite correctly. I have been a pilot for more than 50 years and I can assure you that pilots know a LOT about oxygen. When we are going high, we turn the Oxygen way up before takeoff so we won't have to deal with it later. Your body takes in what it needs and ignores the rest. A healthy person can go to 25000 feet on 100% Oxygen into a mask. You can go to 34000 using pressurized oxygen (sort of like a CPAP device) That is the absolute maximum based on vapor pressure which is way more than you really want to know.
The invention of POC's have been wonderful for pilots. I'm on my fourth now, it's an Inogen G4. As for pulse/continuous I think you learn to use what you need to. I can't really use continuous and keep up my lifestyle. Therefore I have taught myself to be happy with pulse flow. I'll assure you that anyone can do the same. I just finished my second bout with the flue in the last 12 months. You think you are going to die, but since it's my second I knew that I would get better eventually and I have. Take some comfort in that as I'm sure your experience will be similar.

"I want to go quietly in my sleep like Uncle Amos. Not screaming and yelling like his passengers."

Edited by - Gerry-FL on Feb 20 2019 8:56:40 PM
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