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Roadrunne98
Member

USA
264 Posts

Posted - May 15 2019 :  11:11:50 AM  Show Profile  Reply with Quote
Does putting the 02 level up help with being sob and making you function better walking and doing odds and ends? I am stage 4, and walking with the walker and with 02 I still get sob just walking to the bathroom and back to the bed during the night. Also standing in the kitchen doing things on the counter I have to sit down every so often or tell my husband to get this, get that. I hate that. He works hard in the heat and then I have to ask him for help. I know he doesnít like it , especially if he just gets comfortable. I put it up to 2 1/2 yesterday. But why did my one doctor that I loved who died say, ď 2 or 5 it doesnít matterĒ. I thing itís the amt. of space that the 02 can go he meant if makes no difference. If 2 1/2 doesnít do the trick today, can I put it up to 3?

tsainta
Contributing Member

USA
1875 Posts

Posted - May 15 2019 :  12:04:12 PM  Show Profile  Reply with Quote
Try it. Only you can know if it helps.

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

2022 Posts

Posted - May 15 2019 :  8:59:38 PM  Show Profile  Reply with Quote
Here's where you need to use your oximeter. If your O2 sats are low, then by all means, turn the O2 up. That will definitely help. If your O2 sats are good and you're still sob, you need to slow down or stop what you're doing and use your pursed lip breathing to help you get back to where you're not sob. Don't turn your O2 up unless your sats are low. If you do, it won't help and will just waste O2. There's also a very small chance that you could do some harm.

Exercise not only lets me live, it enables me to have a life.
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Roadrunne98
Member

USA
264 Posts

Posted - May 16 2019 :  08:03:09 AM  Show Profile  Reply with Quote
My 02 is good till I get up and walk then it goes down to even 79, 81,85. Just getting up during the night, my 02 is 96 sometimes before I get out of bed, I walk with my walker even and come back , sit down on the bedside and it reads 79, 81, 85. Always below the 88 . So I sit and pulse lip breathe until it goes back to at least 90. But does this warrant putting it up to 2 1/2. It does the same at 2. When I am sitting, it is good, but lift my butt off the chair and walk a little , it plummets and I get sob. And I canít be putting it up and down. I just donít want to put it on 2 1/2 if the 2 does the same and I am not hurting my body any.
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jmrommes
Contributing Member

2022 Posts

Posted - May 16 2019 :  08:41:27 AM  Show Profile  Reply with Quote
Chronically low O2 sats lead to right heart failure and brain damage. What we really don't know is what the cumulative effect of situations like yours creates. Your sats drop really low, but you're able to bring them back up in a couple of minutes. We just don't know whether that all adds up eventually and there may be no answer that's definitive for everyone. My guess is that it's pretty individual in reality. We don't have a lot of facts for this decision. You'll just need to decide how you're going to do things and then do them. Wish I had more facts for you.......

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

USA
1875 Posts

Posted - May 16 2019 :  1:39:30 PM  Show Profile  Reply with Quote
I don't understand why you're hesitant to increase your O2 flow.

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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Roadrunne98
Member

USA
264 Posts

Posted - May 16 2019 :  3:38:54 PM  Show Profile  Reply with Quote
I donít like to increase the flow because someone said you will have to always have it higher if you start raising it.
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sslei
Member

161 Posts

Posted - May 16 2019 :  3:53:35 PM  Show Profile  Reply with Quote
Some people believe that to be the case , the more you use ,the more you have to use, others say that is not true at all. I do not know for sure, but at this point I do not think by putting it up some for exertion causes any extra need, try breathing through you nose and doing pursed lip breathing twice as long ,when you are walking or doing a little extra, mine drops some also. I am just now learning to do that I have always had a stuffy nose and could not figure out how to inhale through my nose. I think if you do it quite often you will see some improvement.
Sandy L.
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tsainta
Contributing Member

USA
1875 Posts

Posted - May 16 2019 :  7:42:10 PM  Show Profile  Reply with Quote
The increased oxygen dependency idea has been debunked over and over. If you have COPD, your lung function will deteriorate over time and you will need increasing amounts of oxygen to function. Go with the flow. Let your body tell you what it needs. Or--keep yourself in a state of continuing, and unnecessary, suffering.

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

2022 Posts

Posted - May 16 2019 :  8:25:23 PM  Show Profile  Reply with Quote
Roadrunner, you lose lung function every year, just like everyone else. So every year, even though you stay stable relative to everyone else, you still blow less each year, and as that happens, your need to O2 generally increases. The only people I know who've been able to stave that off are people who get themselves in the very best shape they can by working out every day with both aerobic exercise and lots of weight/resistance training.

Exercise not only lets me live, it enables me to have a life.
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Roadrunne98
Member

USA
264 Posts

Posted - May 18 2019 :  1:05:06 PM  Show Profile  Reply with Quote
This morning I got up and changed all my tubing and the amt. of 02 coming out of the nasal passage was like night and day. It was coming thru before the change , but not as strong and forceful as after changing them. I did not find any cracks this time in the tubing like I did once before either. I will beware of that again. Check yours also. Now when I go from b/r to bathroom, it was at 91 when I returned, not 79
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MDC
Member

442 Posts

Posted - May 26 2019 :  09:07:36 AM  Show Profile  Reply with Quote
Glad you solved that!! But I still up my 02 during activity.

God Bless,
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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rjh-spokane
Member

USA
51 Posts

Posted - May 27 2019 :  02:35:37 AM  Show Profile  Reply with Quote
i'm glad you found that and you reminded all of us about what can happen. I have had this happen before and like you I tend to forget about it. Thanks for reminding me.
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Sandy9s
Member

USA
492 Posts

Posted - May 28 2019 :  7:33:44 PM  Show Profile  Reply with Quote
My 02 is set at 2-1/2 most of the time. And most of the time my SATS stay in the 90's when I'm not doing much. But when I take a shower, I'm too lazy to turn up the 02 to probably 4. So that, after my shower when I sit on the edge of the bed, my SATS are about 76 or 79 or 81. They go up within a minute or two and I feel none the worse for wear. BUT I do think it would be better for my brain if I turned up the 02 before my shower and then turned it down again afterwards.

It's not only the shower which causes SATS to fall.......everything will do it -- cooking, walking, changing clothes, etc. etc.

But I "do nothing" more often than I "do something." That's why I keep the 02 at 2-1/2.

May be I should "up" it to 3 all the time.........

Everyone is different -- and everyone has to decide what Liter to use (after talking to their Dr. about it). My Doctor doesn't say much when I tell him what I do with my 02 numbers......he knows he doesn't live in my body!



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Diane545
Member

USA
326 Posts

Posted - Sep 01 2019 :  11:43:10 AM  Show Profile  Reply with Quote
Thanks for sharing. I'm not the only one who has this problem. I normally use 2 lpm. I did talk pulmonologist and he said during walking and activity to turn up to 3. I do try do the purse lip breathing which helps but I get so frustrated with always getting SOB. It's very uncomfortable and takes a while to come back. I am taking more breaks before getting SOB which help. I just refuse to give in and will keep fighting this disease.
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Sandy9s
Member

USA
492 Posts

Posted - Sep 01 2019 :  12:28:19 PM  Show Profile  Reply with Quote
Diane -- I find that I turn up to 4 more and more frequently -- to let me last a bit longer before I get SOB again. Today, while changing the sheets on the beds, even at 4, I had to stop after every different thing I did, sit down and catch my breath, then get up and do the next thing, etc. etc. etc. I hate it! But eventually the sheets got all changed. My husband puts on the bottom fitted sheet and I do the rest. Today he washed the sheets. (We have 2 twin beds on a King Headboard.)

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jmrommes
Contributing Member

2022 Posts

Posted - Sep 01 2019 :  5:05:12 PM  Show Profile  Reply with Quote
My doc and I have a deal: I'm to keep my O2 sats between 92 and 97 and he doesn't care how I do it. I find I'm most comfortable if my sats are around 95-97, so I generally try to keep things right up there. That keeps me from getting too sob too quickly and I know that I simply need to slow down a bit and things will be fine. I think this will become the norm for prescribing O2 in the future: expecting people to use their oximeters and titrate their own O2.

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

161 Posts

Posted - Sep 01 2019 :  6:20:22 PM  Show Profile  Reply with Quote
Jean how do you titrate , keep your sats at 95-97 Mine when I am sitting stays at 99 99% of the time, now I am supposed to be a retainer although I do not know if I ever had the gas test. When they put that thing down my throat a few years ago I don't know what all they did.
Sandy L.
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Sandy9s
Member

USA
492 Posts

Posted - Sep 08 2019 :  4:07:17 PM  Show Profile  Reply with Quote
Just wanted to say that my Pulmonologist (and probably others also) was surprised when I said that I change my settings on my oxygen both in my house and on my tanks when I am outside of the house. He was surprised when I said I go down to 77 or 79 if I take a shower at a 2L setting..........I said I really should put it to probably 4 or so. He was surprised because when he listened to my chest and my breathing, he said I sounded REALLY GREAT! In fact, it was the 1st time in more than 2 years that he did NOT hear wheezing sounds!

This kind of proves that Pulmonologists really don't know what oxygen settings are best for their patients to keep their patients in the 90's on their Pulse Oximeters. And it also kind of proves that when we are "stable", i.e. not having an exacerbation, the Pulmonologist is happy that his choice of medicines for us is working. That was HIS GOAL!

The Pulmonologists do not live inside of our bodies. They do NOT know what settings make us stay in the 90's. Medicare thinks that they know, but they do NOT know this answer! Only WE know this answer!!! My Pulmonologist (and probably ALL Of them) started me on oxygen at 2L. It's a good start.........but definitely NOT WHAT ALL OF US NEED!! Some of us need more than 2L. Our Pulse Oximeter is what will tell us that answer.



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jmrommes
Contributing Member

2022 Posts

Posted - Sep 08 2019 :  4:32:15 PM  Show Profile  Reply with Quote
To titrate your O2 levels, you use your oximeter and adjust the flow to what you need to maintain a certain level. That's all it means. Some of the top pulomonologists are trying this method with their patients and finding that it generally works and that patients stay oxygenated appropriately. It gives me the responsibility of keeping my O2 sats where I want them, within the limits my doc has set.

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