"please keep me updated about oximeters "
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Low Point~VERY discouraged and depressed!!
I suppose I have made some progress since starting CPAP in Mid March. I am fairly well adjusted to the Quattro FX full face mask. My machine is on Aflex set 9-12. Most nights I sleep well until some back pain wakes me. Well I had my over night O2 sat last night. Still 5% of the time I was at 80%. When I was on pressure of 8 O2 sat was below 90 10% of the time. The rest was all above 90. I feel sure my MD will put me on O2 at night now also with the CPAP. I am only 63, 5'6" and 133 pounds. So loosing weight is not really in the equation. At my first visit with the sleep Doc she said my airway was probably small as I am petite all over. Both my husband & I are retired and like to do some traveling. Well with O2 I see that ending. It is one thing to travel with the CPAP but I will not be carrying )2 tanks and taking out at each hotel/motel we are staying in. Am I wrong? If machine is already on Aflex then if pressure were increased it would not help any more? 90% of the time my pressure is 10.2 now. I feel very defeated with this horrible "disease". I have been compliant from day one and I still do not feel I am winning. Well, I am done whining and ranting. Just waiting until the doctor calls back. It won't be today and I am impatient and worried!
Views: 143
Replies to This Discussion
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Permalink Reply by Ginny Edmundson on
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thanks~if re stuffing my double edge with down does not work I will try that.
Mike C (at the Beach!) said:
I have had probably 100 pillows of all material, shapes & sizes with my cervical & spinal injuries. The one I have stuck with & had best success with so far are Buckwheat pillows. They conform to ANY shape and have been ideal for cpap. Also amazing in hot weather unlike so many.
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Permalink Reply by Rooster on
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So Ginny, On your Daily Details report, what do your pressure line, leak line, and events graphs typically look like? Please post a typical night's Daily Details chart (one page) here.
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Last time I went to the sleep doctor and they set the machine at Aflex (like I asked) for some reason~and I don't know if it was intentional or not~some things were disabled. All I can see is that my average pressure is 10.2. I do know when I went to the doctor it showed no leaks. Know nothing about events graphs. She went over it with me and I understood at the time but since I do not have copies of report can't remember! Next time I am going to ask for a copy. For an RN I am pretty stupid about CPAP. But have been reading a lot about it now, that's for sure. :)
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Oh Ginny, Ginny, you poor sweet neighbor, here in this thread a wild goose chase is going on about oxygen supplementation, sleep positions, down, buckwheat, surgery, contour pillows, and you do not yet have "THE SOFTWARE" to check whether your current CPAP therapy is effective or not.
All of this is premature. You need the data. Your current therapy may not be working well. You need to see your numbers every day, in your own home. You need to see the numbers right there in Clyde.
Your chart for last night might look like this:
OK, let's start over. What is the manufacturer and exact model name of your machine?
Ginny, Ginny, you got your numbers?
You need to make it yours.
Ginny, Ginny, do get your numbers,
8-6-7-5-3-0-9 (8-6-7-5-3-0-9)
8-6-7-5-3-0-9 (8-6-7-5-3-0-9)nie-uh-nien
Hang on to your retirement dreams for now.
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Ginny said, "At my first visit with the sleep Doc she said my airway was probably small as I am petite all over."
Tell your doctor I said, "Duh-huh". About 99% of patients with obstructive sleep apnea or UARS have small airways.
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Do you live in Clyde? :) I have a Phillips Respironics REMstar Auto A-Flex with humidifier. My computer is a MAC so I don't know if there is software that would work with it. My doctor prints out the info from the data card as well as the DME. They both go over it with me (especially the doctor) You know I don't really know all the diagnosis she has even put on me. She mentioned when looking at my last data (which was greatly improved from 50% of the eime being 80 or under to just the 10% with lowest at 80. Said there were some central apneas and obstructive apneas.
Rooster said:
Oh Ginny, Ginny, you poor sweet neighbor, here in this thread a wild goose chase is going on about oxygen supplementation, sleep positions, down, buckwheat, surgery, contour pillows, and you do not yet have "THE SOFTWARE" to check whether your current CPAP therapy is effective or not.
All of this is premature. You need the data. Your current therapy may not be working well. You need to see your numbers every day, in your own home. You need to see the numbers right there in Clyde.
Your chart for last night might look like this:
Ginny, Ginny, you got your numbers?
You need to make it yours.
Ginny, Ginny, do get your numbers,
8-6-7-5-3-0-9 (8-6-7-5-3-0-9)
8-6-7-5-3-0-9 (8-6-7-5-3-0-9)nie-uh-nien
Hang on to your retirement dreams for now.
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Permalink Reply by RL on
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Hi Ginny,
I have complex sleep apnea (obstructive and central apneas together), and had to have O2 with my CPAP at first too. It was easy enough to deal with, a tube feeding the oxygen from a concentrator into my CPAP tube, and I believe it did help. When I was first set up with this by my DME, they told me that if I was traveling somewhere, I could let them know and they would have a concentrator or tanks delivered to whatever hotel I was going to, with some advance notice. That way, I would only need to bring my CPAP.
I was able to do an overnight oximetry test done several months later, showing my APAP was working well enough to keep my O2 levels over 90% saturation, so I discontinued the O2. I plan to periodically have my O2 level tested, and buy my own oximeter when I can so I can keep an eye on it as well.
My initial diagnosis report suggested that I might need a VPAP if the other types of machines were not successful. Not knowing what your diagnosis is, I'm not sure if that is relevant to your situation. At least it is good to know you are having the O2 issue, so it can be addressed. You may be able to deal with it and think better after using the O2 for awhile, then you can reevaluate and discuss options with your doctor.
Best wishes - RL
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