COPD Information Forum

COPD Information Forum
[ COPD Information Forum ]

Increasing need for o2

Posted by linda md on 11/5/2009, 5:44 pm
98.140.246.15

Most of you are aware of my recent posts about the stent, 2 ER visits for COPD exacerbation, visits to pulmo, etc. I am finding that my need for supplemental o2 is increasing instead of decreasing and my pulse ox is dropping as well. I am having problems keeping my pulse ox above 92 even while not doing much. I have had to increase the concentrator to almost 5 liters just to walk around the house.

I should be getting better by this time, and I am wondering if it could be the pred taper that is causing some problems. I am on 3 mg today, and that will be for 3 days and then down to 2 mg., etc. I will finish the antibiotic tomorrow. I have a stuffy nose all the time and am using atrovent nasal spray 3 times a day.

I feel that my symptoms that sent me to the er and pulmo are improving, but the shortness of breath and need for increased supplemental o2 is concerning me. I sent an e-mail to my pulmonologist today and hopefully he will respond soon. He told me when I last saw him that it could take into mid November before I see maximum improvement. He does have me on the morphine sulfate 15 mg. twice a day in addition to a whole host of the other meds. Only real change has been they stopped my Nexium due to contraindication with the Plavix They started me on Protonix and Zantac. Any ideas? Thanks.
Linda

Post a Response

Re: Increasing need for o2

Posted by Karen-SC on 11/6/2009, 10:28 am, in reply to "Increasing need for o2"
72.155.176.154

I am curious. Does your concentrator have two lights or three. If you have or had three lights, a yellow light should have come on to warn you that the oxygen percentage was below 85%. Unfortunately, I understand that many DME companies are going to the concentrators without the sensor cause they were getting too many phone calls, and they cost less. I found this out when I was in the process of purchasing my own concentrator. The new one only had two lights. I insisted on one with a sensor and they brought another one. I want to know what I'm getting, and I want some warning when the percentage is getting low.

Post a Response

Karen-SC

Posted by linda md on 11/6/2009, 4:07 pm, in reply to "Re: Increasing need for o2"
98.140.246.15

There are no warning lights or sensors on my o2 concentrator. The only light on that machine was the green light that says it is on. It was serviced about 6 months ago and I understand it was an old machine, but the o2 delivery man said it was "working just fine" at that time.

Linda

Post a Response

OCI light

Posted by Luke on 11/7/2009, 12:42 am, in reply to "Karen-SC"
63.131.226.120

The warning light for low oxygen warning...or to show it is okay is called the Oxygen Concentration Indicator (OCI) Most, if not all new concentrators either have them or are available as an option. Anyone that has a concentrator without an OCI should be telling Linda's story to their O2 provider.

Post a Response

Re: OCI light

Posted by linda md on 11/7/2009, 12:25 pm, in reply to "OCI light"
98.140.246.15

I totally agree with you. I have absolutely no idea how long this has been going on. I do know I have been more short of breath for several months and we have been blaming it on allergies, the weather, or just the nature of the beast called COPD. These could all be true, but I cannot believe how much better I am feeling. It is so nice to walk to the front door without gasping and having to stop.
Linda

Post a Response

Re: Karen-SC

Posted by KarenSC on 11/6/2009, 6:41 pm, in reply to "Karen-SC"
65.12.100.122

Did he check it with an analyzer? Although, just like anything else, it can be fine one day and not the next.

Post a Response

May Have Found My Problem

Posted by linda md on 11/5/2009, 6:25 pm, in reply to "Increasing need for o2"
98.140.246.15

I tried a little experiment and put on my walk about o2, which is the pulse demand o2. I could not believe my pulse ox went up to 99. I walked into the other room and it was 98. I just put a call into my o2 provider as I called there two weeks ago and asked if they could come out to check the machine as it was making loud noises and I was concerned about the flow not being accurate and the tech told me that my concerns were not founded and that it was fine. The fact that the little ball was jumping all over the place was "bazaar" according to him.

I'll let you know how things go with this. Thanks.

Linda

Post a Response

Re: May Have Found My Problem

Posted by Luke on 11/5/2009, 6:48 pm, in reply to "May Have Found My Problem"
63.131.224.247

Linda, the evidence is really with the concentrator being bad. A couple of ways to check on you own is to sit and at rest turn the Liter indicator to different levels and see if you sats go up. The second, which I have done, but will bring an uproar, so if you want to know that one email direct.

Call the provider and tell them to get out there with another concentrator as they may be liable for a lawsuit for negligence. Don't wait until morning either.

Boy, here is a prime example which points out that we need to check the most obvious first, last and always.....may save our lives. I spent two weeks with my "travel concentrator", which I own(ed) blowing air. Fortunately I needed it only at night, but still felt awful the whole time and it nearly ruined the vacation before I figured it out.

Post a Response

Luke

Posted by linda md on 11/5/2009, 7:28 pm, in reply to "Re: May Have Found My Problem"
98.140.246.15

I called and they told me to turn off the concentrator and to use the huge back-up tank tonight. The tech said they will bring a new concentrator and huge tank tomorrow morning.

I can't tell you how much better I feel since I put the cannula on that other tank. I am doing things and walking up the steps, something I have not been able to do without stopping a number of times. I even made homemade Salisbury Steaks with gravy and mashed potatoes for dinner. My husband said it smelled so good in here when he got home.

You guys are so right. Check out the equipment and don't be complacent when things just don't seem right. Thanks.
Linda

Post a Response

linda

Posted by nancy ma on 11/5/2009, 7:46 pm, in reply to "Luke"
72.72.111.145

linda i dont know where you are from but i am in mass. same thing happened to me last week. lincare had called and said they would bring me a new concentrator as mine was 5 years old that was in august. well i got one last wed. and from wed. until sunday i was so short of breathe and dizzy i thought " oh oh" im on my way to the er well i did 1 more check as when i was on my portable tank i was fine. well the new conc. was defective. i called monday morning and within 1 hour they were here with another one. I had my tank and my concentrator and my oximiter portable tank i was about 93 which for me is good concentrator i was low 70"s and scared to death. Im still not where i was tho and dont know whats going on. im on symbicort and spiriva and pro air if i need it.
nancy-ma.

Post a Response

Nancy

Posted by linda md on 11/6/2009, 12:04 am, in reply to "linda"
98.140.246.15

I know how scary this must have been for you. Sats that low can do a lot of harm, just like Chris said. I know I was going crazy trying to figure out why I was not getting better. Short of breath, low o2 sats, and doing everything my docs were telling me to do.

Let us know how you are doing.
Linda

Post a Response

Re: Nancy

Posted by Chris M. on 11/6/2009, 12:28 am, in reply to "Nancy"
72.251.78.232

And don't forget too, it's often hard to load fresh oxygen in overstuffed lungs. It's sometimes very beneficial to do some diaphragmatic breathing by laying flat, and literally watching any object laying across ones belly go lower as you "exhaust" firmly a little extra air with a some work from your diaphragm.

We tend to stack air, leaving us "stuffed with" bad air, and dumping some of that lets us pace ourselves better to do PLB and start out with a better balance.
Learning to walk and work with a much slower pace, giving some attention to adequate exhaust of stale air can make a big difference in how you feel. You start to gain some control. We need to control how we move and breathe or we don't get much living done well.

Post a Response

Re: Nancy

Posted by NANCY A on 11/7/2009, 10:39 am, in reply to "Re: Nancy"
72.72.111.145

chris your so right and if we are not on top of everything no one else gives a hoot. i found this out. my delivery man is a sweetheart but he is a delivery man and they dont know much about concentrators no more than i do. i probablly know more. I found my own problem and called them this time.
stay well ev1.
nancy-ma.

Post a Response

Re: Nancy

Posted by CarolCA on 11/7/2009, 4:51 pm, in reply to "Re: Nancy"
98.248.53.53

They should be properly trained to know everything about the concentrator as they are on the front lines. No excuse for not knowing.

Post a Response

Re: linda and Nancy

Posted by Chris M. on 11/5/2009, 10:39 pm, in reply to "linda"
72.251.78.232

Learning all you can personally about your equipment is essential for COPD'ers or for that matter anyone who uses supplemental oxygen. Chronic low oxygen can cause brain damage if nothing else, so become the local expert fast as you are the only one who will notice the slightly pinched tubing, the worn connector, the new noise...

I think oxygen in our free room is 21%, but those extra liters you are inhaling only bring you up to what others experience as "normal"...so when you drop lower you are robbing your brain, heart, kidney's, etc. No one else notices your slight problem but you are smart enough to become an advocate for your future by being able to monitor, adjust and check your own equipment and tubing.

Sadly, the DME suppliers are only filling contract requirements, and fill demands reluctantly, so I'm still amazed Nancy got the cooperation she did on her trips, but this is no time to be hands off- learn as much as you can and don't expect these companies to care a hoot. When they do, wonderful,still watch them closely for we are the ones who loose with a subtle too low oxygen.

Post a Response

linda and chris

Posted by nancy ma on 11/6/2009, 8:44 am, in reply to "Re: linda and Nancy"
72.72.111.145

hi chris
you are so "right on" ive been on o2 for 7 years and have learned so much from this site and from some of you that really give out great info.I have been having trouble since about april when my pulm. dr. decided to change me from advair to symbicort. only because of the muscle spasms i was experiencing, said they should decrese, and they have, but the breathing isnt as good with symbicort. this last ordeal with the concentrator took the cake but they were here within an hour. had an awful time with this lincare office in the last 3 years. 3 new managers with no experience, the office girls have had a turnover every week they leave for lunch and dont go back. wish i was able i would go to work for them but its to far away. lol
thank god for the delivery men. their gems.
good breathing
nancy-ma

Post a Response

Re: linda and chris

Posted by Chris M. on 11/6/2009, 8:31 pm, in reply to "linda and chris"
72.251.74.254

There's a catchy phrase for the situation, but my Pulmo did suggest that that's what having an oximeter is intended to do- tell you when you are using too little or too much oxygen.

I have found that some chronic cramps are related to too low saturation levels..I'm not suggesting you adjust levels but you can sure start the conversation with your Doc if you have some readings to offer.

So perhaps it's not the meds but that instead you may need a slightly higher setting for sleeping or a sleep study if that's the only way to achieve an answer to the cramps.

Post a Response

Re: linda and chris

Posted by CarolCA on 11/6/2009, 10:47 pm, in reply to "Re: linda and chris"
98.248.53.53

How can it tell you if you are using too much?

Post a Response

Re: linda and chris

Posted by Chris M. on 11/7/2009, 8:54 pm, in reply to "Re: linda and chris"
72.251.73.84

Carol, I'm not suggesting an oximeter is like a register of perfect readings, but a guide to find ranges of oxygen supplementation with your Doc. It beats guessing, and that's why I was encouraged to buy one and check readings to try and work with my Doc to see if I could maintain good higher saturation levels.

Personally I'm unconvinced that maintaining high oxygen sats is harmful in any way as I don't play with my equipment much and leave it fairly high. It was suggested I leave it .5liter higher at night as he supervised the readings during my original hospital treatment. The comment was that it's his usual suggestion as a great deal of heart problems occur predawn so it's a clue.

I know everyone fears the CO2 retention but I suspect low saturation levels are equally a problem- so it's important to stay active, follow good breathing practices consistantly.
I conciously avoid foods and drinks that encourage CO2 and try to keep moving and active during each day...If I found readings consistently too high, I'd know its time to dial down the O2 and start moving more.

Having a very severe diagnosis for over 10 years means one experiences all the difficulties of low and high oxygen, and given a choice, I'll avoid low oxygen any day. I find high sats encourages me to do more- what's not to like. I suspect the beast that devours lies somewhere around sitting quietly munching snacks while doing computer stuff... then I'm counting on suspect concentrator settings, food adding to the load and paying no attention...I've actually been disconnected and didn't notice. I've had more difficulty with unsuspected disconnects that any using high sats.
We always need to realise though, that each person has a unique set of aspects of COPD. I have mostly emphysema with some asthma, but have controlled my mucous almost completely. I really drop rapidly if I am not on oxygen. I enjoy having a brain saturated with a 'teenage' amount of oxygen. It seems to be a good solution.

Post a Response

Re: linda and chris

Posted by John O. on 11/7/2009, 10:30 pm, in reply to "Re: linda and chris"
69.129.197.8

Totally agree! In the 30 years I've had COPD no doctor has ever used the words "carbon dioxide retention" to me.

Post a Response

Re: linda and chris

Posted by MaryEllen on 11/7/2009, 3:08 pm, in reply to "Re: linda and chris"
97.115.91.32

Hi Carol: I read on another message board that we cannot get too much oxygen from out home oxygen concentrators. That it is a an old myth stemming from way back. There have been studies done since then to prove we cannot get too much oxygen. I would imagine once your saturation point reaches 100% you are pretty much full of oxygen at that point. I am comfortable at 95-96% and use 5 liters to main that comfort level for me. When I am excercising as in pulmonary rehab, the RT's have increased my oxygen to 10 liters just to keep my saturation around 93-94$ which along with my pursed lip breathing keeps me comfortable. I would get so tired of changing the liter flow at home to meet my specific needs my Pulmo said to just leave at 5 liters if that is where I am most ccomfortable now. Just an opinion from me. A perfectly healthy person with no lung problems would have at least a 94-98%, maybe even 100% saturation level. Why would I not want a sat level to keep me normal as possible?

Post a Response

Re: linda and chris

Posted by CarolCA on 11/7/2009, 4:50 pm, in reply to "Re: linda and chris"
98.248.53.53

Mary Ellen, I was referring to the comment Chris said her doctors made about the oximeter being used to tell when you need O2 and when you are getting too much. I don't think there is a way to tell if you are getting too much and like you say it is very unlikely but the comment didn't make sense to me since the oximeter can't tell you if you are getting too much. That said people that have bad lungs can in some situations not expel the CO2 enough and will tend to start stacking air so they will have CO2 retention but it is rare. I am not sure if that is what people are talking about when they say they are afraid of too much O2. My guess is that if my sats were at 98 without O2 and then I put it on and cranked it up I might have a problem getting rid of the CO2. Not going to try.

Post a Response

Re: linda and chris

Posted by Chris M. on 11/7/2009, 9:05 pm, in reply to "Re: linda and chris"
72.251.73.84

You are correct Carol- of course no oximeter can read CO2 levels but if you are at 100% on your meter and starting to feel sluggish, I think you have enough common sense to know that it's not accurate but a clue.

Oximeters are reading at the tip of ones finger. Blood is traveling and you are not getting an actual reading but a trend as it circulates. I can't tell you how many times I've appreciated that "it's coming back" as I've struggled in a given moment, often doing some Rehab breathing patiently. I'm not patient enough and "pacing" drives me nuts, but we were mostly the fast moving addictive types of people who smoked. Things never really change- I'm still not a noble patient soul.

Post a Response

Re: linda and chris

Posted by John O. on 11/7/2009, 3:53 pm, in reply to "Re: linda and chris"
69.129.197.8

Mary Ellen, do you mean that you use 5 liters for sleeping as well? I am on 4 L 24/7, excepting 6 for the treadmill or other aerobic exercise.

Post a Response

Re: linda and chris

Posted by MaryEllen on 11/7/2009, 6:07 pm, in reply to "Re: linda and chris"
97.115.91.32

John, yes, I use 5 liters for sleeping as well. I can comfortably turn it down to 4 liters, but my Pulmo suggested I just keep it at 5 so I have blindly followed her advice with out ever questioning her reason. However, since I have moved here to Oregon, as soon as I can find a new Pulmo, I plan on being much more proactive with him/her since I have learned so much since my original diagnosis in 1997. Thanks to this message board and others, I have learned a great deal.

Thank you to you and all the other posters for sharing your knowledge, advice and suggestions!

Mary Ellen/OR

Post a Response

«Back to thread

[ COPD Information Forum ]