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[Treatment] May be Too Late for Me Too
#51
kwhenrykerr:
You are so right (we must learn from each other, the doctors sure don't help much).

In line with that, I have a question for you: Did you start with auto CPAP before you added oxygen assist? Were you using your oximeter at the time you started CPAP? If yes to all questions, when you started oxygen assist, how long did it take before you saw any effects from the added oxygen (as shown on your oximeter's data)?

I'm asking because my last night's data did not show any improvement (for me) at all, with the oxygen assist running all night. The SpO2% graph looks much the same as it has for the past 1 year 10 months that I've been using my oximeter. I did not get any "flat line" profile last night as I have for the first 2 or 3 nights with Oxygen assist.

Thank you!
Carl
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#52
Carl let me try to answer your questions:

Did you start with auto CPAP before you added oxygen assist?
Yes I did add oxygen when using Auto CPAP but only after I started to check my own oxygen level.

Were you using your oximeter at the time you started CPAP?
No I started with a "Brick" CPAP, that is one that did not provide any information. It helped me and I was after a several months able to get an Auto CPAP. I bought a oximeter from one of the suppliers listed on this fourm and began to use it. Only after I felt ok with it's use did I start to add oxygen while sleeping. I started with one hour and then got comfortable with the oxygen.

how long did it take before you saw any effects from the added oxygen (as shown on your oximeter's data)?
I saw the a slight change as soon as I started using the added oxygen while sleeping. I increased the amount of added oxygen until my sleeping levels reached the mid 90's. This level was 2L for me. I have not changed this level of support.

With the added oxygen for about 120 days now I stay in the upper 90's as reported by the oximeter when sleeping. I feel much better and do not get as winded.

It is my thinking that the first CPAP helped, the Auto CPAP helped a lot and the added oxygen is the topping on the cake.

You may have picked up the idea that I have been doing some of my own doctoring. You would be right. I think very highly of almost all the doctors I have seen. Most of them have been very careful with their treatment. I can not blame them with the number of challenges they must face just to keep working, i.e. Lawyers, paperwork and other distractions. I have taken the opinion that the different doctors do not talk to each other well. I have found that the test reports are sloppy at times (the doctor requesting that the report be redone, missing information. Lab reports taken from two different labs showing different values.) I have seen my doctors reorder test, be upset at the reports that they know are wrong, frustrated by not getting reports of information from other doctors after several request. I have more than once had to go in person to pick-up and hand carry paper reports to other doctors. I have had two doctors that have flat out said their staff was less than trustworthy. I have been told to go to the local medical school so that they may use my "challenges" to help the students learn and maybe get some answers. Having said all of that their is only one doctor that I would not return to. He agreed with three others that I needed a treatment, that all the lab work for this said I needed his services but he did not want to proceed without more test and delays. I found a more eager person with a knife and was cut on ASAP.

I feel sure that I have been given great care overall. I thank my doctors every time I see them. Only a few have taken the time to step out of the lab coats and be less professional. They are the most valued to me, I feel like I am talking to a family member who cares.

Sorry to bore you with this but it is just a road that we must take, bumps and all. Take time to let things work, keep educating your self and try to be a good observer of yourself. Question what you learn and see so as not to go down a wrong turn in your road. Do not be afraid to back-up and look at what you are doing. It may seem that you are being selfcentered but who is more involved than you. Keep smiling and find as much joy as you can. Sleep-well

I do not face the challenges they do so I do not feel like waiting as long to try something to see if it helps.

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#53
[attachment=2769]kwhenrykerr:
Thank you for the information! You must have spent a whole lot of time writing your response. I guess the thing you advise about taking my time and proceeding carefully is probably the best part of your message. I tend to expect things to happen quickly when dealing with therapy machines or lab testing results. Usually that is the case, however, in the sleep apnea there seems to be so many variables and factors that can affect the ongoing results that it is impossible to know ahead of time what works and what doesn't work.

Also, your advice about checking everything often (observe) may have paid off yesterday. I am supposed to be receiving 2 L oxygen and I took a look at the flow gage on the oxygen generator while it was running and properly set up (hose system especially). I should have done this sooner but I made the mistake of thinking the technician who installed the generator for me (and set up the hose system wrong) would have set the proper oxygen flow rate. Anyway, maybe something else changed the flow rate because it was about 1 3/4 L when I looked. It was a very simple (easy & quick) adjustment of a valve and I had the flow gage reading 2 L as it should have been. I couldn't tell any difference in what I was breathing (still felt the same to me) but maybe the oxygen flow was a bit higher because my overnight SpO2% reading improved significantly (see attached graph). Then again, maybe it's just another "knee jerk" statistical outlier. I can only hope it's the beginning of something good. I guess time will tell (hopefully).

After I awoke this morning and before removing the mask or shutting down the equipment, I checked the oxygen flow rate. It was still exactly 2 L so I think I got it right.

Thank you for all the information. I am slowly learning a lot about sleep apnea and its consequences.
Carl

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#54
Thanks Carl

You are the man in charge of your care. You will feel better and do better as time goes on and you learn more. I can not wait to reach the stage of
'Know it All" right now I still only know is how much I Do Not Know. Every time I think I learn something it tells me that there is a lot more to learn.
Oh-jeez

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#55
Last night I had a 3rd night in a row where my SpO2% stayed above 90%. One night it was at 90% but the other 2 nights it has been 92.1% and 91.7%. My AHI was 1.61, 1.27 and 1.92 respectively so that is OK, I guess.

Last night I changed my minimum pressure from 5 cm H2O to 6 cm H2O as recommended by Sleeprider a while ago. Actually Sleeprider recommended 7 but I figured I would do it a little at a time and see if all is OK before raising it to 7.

I had one night of the above 3 nights where my hypopnea took a big lead over obstructive apnea (hypopnea = 1.02, OA = 0.25, RERA = 0.13). The H & OA values are usually the other way around. That was the same night as my SpO2% dropped to 90% and my AHI was 1.27. I looked back at my previous data and I saw that occasionally this has been happening (unknown as to what triggered it) since I started auto CPAP. I don't know if I should be concerned because I don't know what it means.

If you want me to post graphics of anything, please let me know.

Thank you for helping me get this far! I shall keep trying.
Carl
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#56
Hi Carl,

Looks like your are making progress in the right direction. That is good news! At hour AHI levels, the reversal in the ratios of obstructive to hypopnea does not seem to be a big concern to me. It might just be random fluctuations as our bodies don't behave differently night to night. Or it might mean that the pressure is very near to what is needed to prevent most of your OA but not strong enough to prevent them from being converted into hypopneas (open, but not quite enough for good flow).

I'd stick at your settings for a few nights to let yourself adjust and then bump up the minimum to 7, wait a few days, and re-evaluate.
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#57
It was hard for me to not look at the data every time I got up. With the numbers you are seeing I would be very happy and start to relax and enjoy the improvement.

Keep the Faith Carl, CPAP works Sleep-well

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#58
Just a short update.

The last 3 nights have been interesting. The 1st night was pretty bad (SpO2% was 83.8 minutes below 88%). The 2nd & 3rd nights were much better (1.2 minutes & 6.3 minutes respectively). The 1st night had an AHI of 3.82, the 2nd night had an AHI of 0.82 and the 3rd had an AHI of .88.

To date I have modified my auto CPAP & Oxygen generator systems as follows:

1) Oxygen generator flow rate moved up from ~1.7 L to 2.0 L as previously prescribed by Sleep Doctor (mentioned in earlier posting);
2) Increased my EPR setting from 2 to 3 cm H2O (probably mentioned earlier);
3) Increased my minimum pressure to 7 cm H2O (started @ 5, increased to 6 for a few days previously);
4) Modified my ResMed (heated) hose (added / installed nipple for oxygen tube) and used it to replace the generic (not heated) hose that came with the Oxygen generator.

The 3 previous sleep sessions (nights) were all after the above listed 4 changes were made, however, the 1st session had problems (see start of this message). I don't know why as the conditions should have been the same. I guess my body must have changed for that sleep session and I cannot control that.

I shall continue to track my data and thank you for all the help!
Carl
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#59
I often get an AHI pattern like that after making a significant change. I think the first night is the brain registering surprise at the change and the subsequent nice are it settling into the change.
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#60
Good Job Carl:

Keep tinkering with it and give yourself time to adjust between changes.
Sleep-well

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