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 Oxygen use in stage 4
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MDC
Member

380 Posts

Posted - Nov 18 2017 :  4:40:51 PM  Show Profile  Reply with Quote
I know everyone is different I was curious if I am unusual having to wear 02 at 2 lpm most near all of the time?. When comfortable sitting, sometimes I can get off and stay off till excersion or use a tank and conserver on 2-3. I always sleep with it and have for years after sleep test. Any excersion and I need 02.

Been kinda rough here all help appreciated.Should not be complaining just a period of adjustment I think.

Thanks,
Mike

Sorry Dave if I should have posted on 02 page.


Knowledge is knowing a tomato is a fruit.
Wisdom is knowing not to put it in a fruit salad.

Edited by - MDC on Nov 18 2017 5:10:21 PM

tsainta
Contributing Member

USA
1754 Posts

Posted - Nov 18 2017 :  7:44:27 PM  Show Profile  Reply with Quote
I have been very severe (Stage 4) for years. I have been on oxygen 24/7 since spring, 2009. The requirement has slowly but steadily increased. I now keep it at 7 LPM around the house because that's what I need when I'm up and moving. Three LPM would suffice for just sitting, but I can't reach the concentrator every time I get up or sit down in different rooms. Yet I just got back from shopping at two stores, and in one of them I just walked for a while with my O2 cylinder in the shopping cart.

Every day can become a new reality. Just got to go with the flow.

Tony-CA

50% of dealing with COPD is common sense.
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MDC
Member

380 Posts

Posted - Nov 20 2017 :  09:05:15 AM  Show Profile  Reply with Quote
Good information Tony, and good advise on going with the flow. I need to talk to Dr about increasing while taking showers and strenuous things like getting dressed..lol

Now when I walk (not much lately, med change)I turn up to 3 lpm. No difference than a shower or dressing I guess.

Thank You Sir!

Knowledge is knowing a tomato is a fruit.
Wisdom is knowing not to put it in a fruit salad.
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jmrommes
Contributing Member

1791 Posts

Posted - Nov 20 2017 :  10:18:56 AM  Show Profile  Reply with Quote
For those of us on O2 for anything, unless it's because we just had a bad exacerbation, it's pretty much a given that we're going to have to increase our usage over time. I think having a good heart to heart with your doc and agreeing on a saturation level that you can agree on (say 92 - 97) to stay between is the best bet. By this time your doc ought to know that you're perfectly capable of gauging your own needs, you have an oximeter and use it and you can move enough to turn the O2 up and down as appropriate, so it shouldn't be a difficult discussion to have. That way you'll be much more likely to make sure your doc knows when the equipment you have won't support your needs and to work with you and your provider to be sure you have the equipment necessary.

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

380 Posts

Posted - Nov 20 2017 :  5:05:04 PM  Show Profile  Reply with Quote
Very true Jeanne,

Been on 2 lpm for years at stage 4 for about 5 years, about time for a change. My previous Dr had me on 3 lpm during excersizing and New Dr did same. He has me doing all new tests to establish a baseline for me including an in patient sleep study to evaluate apnea. The excersize is all that has kept me here this long, for that I owe your inspiration!
Thank you so much. I will see new Dr again in Jan after all tests and we will develop our plan of action.

Thank!
Mike

Knowledge is knowing a tomato is a fruit.
Wisdom is knowing not to put it in a fruit salad.

Edited by - MDC on Nov 20 2017 5:06:16 PM
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tsainta
Contributing Member

USA
1754 Posts

Posted - Nov 20 2017 :  6:29:56 PM  Show Profile  Reply with Quote
No one--including no doctor--knows how much oxygen it takes for you to be as mobile as you need/want to be than you. No one is in your skin 24/7 but you. There is no test that can accurately assess all the variations and exertions of your daily life. The six minute walk test is the standard only because no one has been able to think of anything better.

I recommend you approach the doctor by describing your oxygen experience and asking him to order the level of oxygen your experience indicates you need.

Tony-CA

50% of dealing with COPD is common sense.
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MDC
Member

380 Posts

Posted - Nov 21 2017 :  09:35:43 AM  Show Profile  Reply with Quote
Very true Tony. That is what I am going to do. And get it in my records just in case.

Thanks!!

Knowledge is knowing a tomato is a fruit.
Wisdom is knowing not to put it in a fruit salad.
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MDC
Member

380 Posts

Posted - Dec 03 2017 :  9:07:25 PM  Show Profile  Reply with Quote

http://www.oxyview.com/Portals/0/PDF/Why%20does%20my%20oxygen%20saturation%20drop%20when%20I%20get%20up%20and%20move%20around.pdf

Interesting.

Mike

Knowledge is knowing a tomato is a fruit.
Wisdom is knowing not to put it in a fruit salad.
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tsainta
Contributing Member

USA
1754 Posts

Posted - Dec 04 2017 :  12:45:18 AM  Show Profile  Reply with Quote
Mike,

Excellent article. For those who won't take the time to read the full article, here's what this long term oxygen user thinks are the most important takeaways:

Most patients already know to increase their oxygen flow rates to accommodate any physical
activity. Thankfully, we have survived to see the day when very affordable digital pulse
oximetry is available for ALL patients on LTOT. It can’t be stated often enough, do not
confuse oxygen conservation with adequate oxygenation. And certainly don’t ever choose
conservation over oxygenation
.

and

Please remember the landmark work of Dr. Petty and his colleagues regarding oxygen therapy,
activity, and survival. The more continuously you wear your oxygen the longer you will live.
Case closed. You will live longer and with better quality if you stay active, get better
conditioned, and use your oximeter to stay in the normal range for where you live. When you
start to increase your physical activity…turn up your oxygen and “go with the flow.”

Tony-CA

50% of dealing with COPD is common sense.

Edited by - tsainta on Dec 04 2017 12:46:51 AM
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rjh-spokane
Rookie

USA
9 Posts

Posted - Dec 11 2017 :  03:50:35 AM  Show Profile  Reply with Quote
I change the rate of oxygen flow constantly as I move around. I use the valve provided by soft hose ( http://softhose.com/valvedet.htm ) so I can change my flow without going to the concentrator. I have a 10 LPM machine set at maximum and adjust the flow as I need it at my chest level. When I take a shower I hang my C tank on a hook like you use over a door on my curtain rod and if I need more i use it and my concentrator together. Just sitting at a table I get by with 3 liters but the moment I get up and walk or even just stand for a while I need more O2.
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tsainta
Contributing Member

USA
1754 Posts

Posted - Dec 11 2017 :  1:03:49 PM  Show Profile  Reply with Quote
Do you have any trouble with the oxygen tube popping off connectors when you turn down your oxygen at the inline valve?

Tony-CA

50% of dealing with COPD is common sense.
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bamagal73
Rookie

USA
4 Posts

Posted - Jan 15 2018 :  9:21:37 PM  Show Profile  Reply with Quote
I really need the inline valve so I can turn my O2 up when I need to. But,It says not to use it with a swivel connector. The swivel connector has saved me a lot of trouble with the hose kinking.
Should I order the soft hose.?
I recently turned my O2 up to 2 1/2L and it has really helped me.I read here that some of you turn yours up and it made me feel better about doing it. Thanks to all of you for that.

Linda Lee
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Sandy9s
Member

USA
330 Posts

Posted - Feb 04 2018 :  7:55:30 PM  Show Profile  Reply with Quote
I wish someone would be able to tell me where I should try setting my oxygen concentrator. These are WITH the oxygen set at 2 L.

Sitting = 93-95%
Doing nothing = 93-95%
Making supper in kitchen = 86-89%
Changing bedding = 85-89%
Carrying anything while walking in the house -- 87%
(I can't walk far due to terrible hip/Appt. for surgeon on 3/29/18)

Last week, walking to car while talking and pushing a cart with
keyboard and music in it = 75% checked when I got into the car -- huffing and puffing very, very badly. Took about 5 minutes to recoup to 90% -- This is without any oxygen.

The oxygen people brought me an E cylinder with a cart --
I also have an electric one for in the house which goes up to 3 L on continuous.

I want to purchase a SimplyGo -- will the 2L continuous be enough for me -- I know it only lasts .7 hr. and I would need several batteries.

I am so confused.

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jmrommes
Contributing Member

1791 Posts

Posted - Feb 04 2018 :  8:46:14 PM  Show Profile  Reply with Quote
You need to use your oximeter and turn your O2 up when you're making supper or changing linens to see what flow you need to keep your sats at acceptable levels with those activities. You first need to figure out, using your oximeter and changing the liter flow, what your needs are for various activities. I'd choose a saturation level that's comfortable for you. I'm most comfortable when my sats are 95 - 96, and that's where I try to keep them most of the time.

You've answered your own question about the Simply Go. It won't do any better for you during real exertion: hauling groceries, making the bed, getting dinner, etc. than what you're currently using, and that's not doing it for you at 2 LPM. 2LPM is the max the Simply Go can do, so it won't work for you.

The problem with O2, as you've demonstrated, is that you need different flows for different activities. 2 LPM keeps you very comfortable when you're sitting, but as you exert yourself more and more, you need more and more O2 to stay in that comfortable zone.

Wish I had better new for you, but those are the facts as you've presented them.

All this said, you also need to talk with your doc and let her know what your saturation levels are with these various activities. I hope she'll understand and give you some good advice about how and when to raise your O2 levels. If not, consider finding another pulmonologist who is more current with best practices and evidence based medicine.

Jean

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

Edited by - jmrommes on Feb 05 2018 08:29:15 AM
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BillN-MO
Rookie

USA
8 Posts

Posted - Feb 05 2018 :  08:57:02 AM  Show Profile  Reply with Quote
I would not use any O2 in the kitchen if you have any open flames. O2 and fire don't mix well and don't think that you have to get it right into a flame. A couple of months ago a guy took 3 days to die after he set himself on fire at a filling station because his clothes were saturated with O2 and he caused a static spark when he grabbed the nozzle or something caused that spark. The fire chief said his clothes were oxygen saturated and that was all it took to incur a flame which he eventually inhaled. He was NOT wearing his O2 when he started to fill. This was NOT the first time that has happened.
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Dave-OH
Administrator

USA
4063 Posts

Posted - Feb 05 2018 :  11:35:20 AM  Show Profile  Reply with Quote
That makes no science sense. First, air is 21% O2. No, O2, gas fumes and a spark do make sense, but not because the clothes are saturated with O2, but because a spark and gas fumes are very volatile. Throw in a little extra O2 from a source, and the fire will burn hotter, but it is the gas fumes and not the O2.

That is why they warn not to get back in the car while refueling, or to use your cell phone or smoke. Static from the first, and a stray microspark from the phone can all cause the fumes to ignite.

Dave, Forum Administrator
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tsainta
Contributing Member

USA
1754 Posts

Posted - Feb 05 2018 :  12:27:15 PM  Show Profile  Reply with Quote
I think the risk of oxygen in the kitchen is often overstated. I just don't see the big problem with oxygen through a cannula unless one puts one's head near an operating gas burner.

Tony-CA

50% of dealing with COPD is common sense.
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Dave-OH
Administrator

USA
4063 Posts

Posted - Feb 05 2018 :  4:47:56 PM  Show Profile  Reply with Quote
ike other hydrocarbons, gasoline burns in a limited range of its vapor phase and, coupled with its volatility, this makes leaks highly dangerous when sources of ignition are present. Gasoline has a lower explosive limit of 1.4% by volume and an upper explosive limit of 7.6%. If the concentration is below 1.4%, the air-gasoline mixture is too lean and does not ignite. If the concentration is above 7.6%, the mixture is too rich and also does not ignite. However, gasoline vapor rapidly mixes and spreads with air, making unconstrained gasoline quickly flammable.

Dave, Forum Administrator
COPD Support, Inc. http://www.copd-support.com/
Your source for peer support and COPD Info

Chat room http://chat.copd-support.com
Mobile chat room for pads and phone Chat room http://chat.copd-support.com/m

My Site: http://lungresources.com
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Sandy9s
Member

USA
330 Posts

Posted - Feb 07 2018 :  9:15:27 PM  Show Profile  Reply with Quote
Has anyone ever used the DRIVE Smart Dose Regulator.........it's about $200 purchased Online. It senses your activity level and adjusts your 02 level.

Does anyone have a favorite Regulator?

Tony -- What do you carry your C cylinder in -- when you put it into your grocery cart? And didn't you say you needed 7 LPM??? How long does a C cylinder last you?

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jmrommes
Contributing Member

1791 Posts

Posted - Feb 08 2018 :  08:06:33 AM  Show Profile  Reply with Quote
I use a SmartDose; have had one for eight years or so. The only problem with it is that it does sense when you breath rate increases, but doesn't know whether your O2 sats are good or not. No point in getting more O2 if your sats are still good. My SOB has always been with low sats, so it works for me.

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

USA
330 Posts

Posted - Feb 08 2018 :  10:13:11 AM  Show Profile  Reply with Quote
Mmmmm. My heart rate AND breathing rate increases when I start doing anything (and my SATS go down). The SmartDose Regulator just might work for me.
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SEW4no
Member

144 Posts

Posted - Feb 09 2018 :  4:52:41 PM  Show Profile  Reply with Quote
Sandy - see if your O2 provider would be willing to send their respiratory therapist to you to test you with the Smart dose regulator on your oxygen cylinder before buying it outright. Mine did and it was a complete failure re keeping me properly saturated with walking around the outside of my house. I did not like that there was no gauge to tell me how much pressure remained in the cylinder therefore how many minutes would remain. I don't remember but at the time I think there was a 'mini smartdose' and a regular smartdose.' I use a D tank and 4-6 lpm continuous depending on amount of exertion. Wearing an Oximizer as a conserver, does give me some more time out of the cylinder.
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tsainta
Contributing Member

USA
1754 Posts

Posted - Feb 09 2018 :  5:18:14 PM  Show Profile  Reply with Quote
I have tried a Smart Dose also. I found that it did not effectively respond to my need when I needed up to 6LPM for exertion. I also find it impractical to leave the house with a regulator that can't tell me how much oxygen I have remaining. A little scary, actually.

Tony-CA

50% of dealing with COPD is common sense.
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jmrommes
Contributing Member

1791 Posts

Posted - Feb 09 2018 :  8:21:47 PM  Show Profile  Reply with Quote
There is a SmartDose regulator for tanks, and you can always tell how much O2 is left in the tank. With the LOS, you do just have to guess. Us dually it works just fine for me, but every once in a while I get caught. I have both, and like the way they work. I can usually tell exactly where I am with the O2 using LOX.

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

USA
330 Posts

Posted - Feb 09 2018 :  8:25:00 PM  Show Profile  Reply with Quote
Thank you for the information about the Smart Dose. I will not purchase it -- I will need to know how much oxygen is left in the tank!
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Sandy9s
Member

USA
330 Posts

Posted - Feb 18 2018 :  10:29:01 PM  Show Profile  Reply with Quote
Wish I didn't have so many questions. The Drive Regulator I have does CF (continuous flow) at Max 2L. Then the Pulse Settings are 1-2-3-4-5-6-7. I'm trying to get used to the Pulse Settings because the oxygen would last longer in these C cylinders.

Does anybody know what the liters/minute would be if, for instance, I breathed 30 breaths/minute and had the Pulse Setting at 3?

Does 3 on Pulse = 3L/min. 4 on Pulse = 4L/min, etc. etc. etc.?????

I am going to take my Handi-Aire Tote to Chorus tomorrow night holding 2 C cylinders. I am the Director -- it will be a "maiden voyage" for the chorus to see me with oxygen. I have been getting so out of breath directing a fast song..........am hoping that by putting my Pulse Setting at 3 (or more/I will test it), I might not get so out of breath.

My Husband is coming with me tomorrow night -- to help in case I have to change cylinders. I don't know if I know how to put the Regulator on alone......we kind of did the 1st one together. I also need him for moral support!! I know the Chorus will be very accepting of me as long as I just "go for it!" It's a 3-hour rehearsal and I have been huffing and puffing too much without any oxygen with me.

I'm a bit "scared" (not the right word) -- but I need to know how much oxygen I will be getting at the higher Pulse Settings.

Thanks -----

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jmrommes
Contributing Member

1791 Posts

Posted - Feb 19 2018 :  10:22:38 AM  Show Profile  Reply with Quote
Pulse settings do not equate to liter settings on any conserver device that I know. There is a way to mathematically figure it out, but you have to know the bolus size, and remember that no one breathes a consistent 30 breaths per minute, or any number of breaths per minute.

The only way to be sure that you're getting enough O2 to be adequately saturated is to use your oximeter. Once you get used to the conserver you're using and find settings that work for you for various activities, it won't be hard at all to keep track. Just keep your oximeter handy in case you think something's not quite right.

My suggestion for today is to use your C tanks for your household chores. See what you need to stay saturated and use that setting. Remember that while you're rehearsing, you'll just be standing or sitting and not moving around very much, so you should be able to use less O2.

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

USA
1754 Posts

Posted - Feb 19 2018 :  12:52:38 PM  Show Profile  Reply with Quote
Excellent plan and approach. Applicable to many of the questions asked on this board.

Tony-CA

50% of dealing with COPD is common sense.
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