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[Treatment] May be Too Late for Me Too
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Tubaman Offline

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Post: #31
RE: May be Too Late for Me Too
natyprueba & BadGoodDeb:
Thank you for your replies. They are quite helpful to me as I am on a steep learning curve since I found out I had sleep apnea and low saturated oxygen levels (which apparently have not improved even though my AHI is usually in the 1 to 2 range with auto CPAP).

My doctors also told me that my tuba playing should have helped make my lungs stronger (I did a lot, quite loud, over the years from around 1951 through 1978) and then I tapered off.

I have tried to lie on my side but I always go back to lying on my back while sleeping. I try to prop one side up using a pillow so I am at an angle and that seems to work somewhat. I must keep my feet elevated while sleeping ever since they started turning blue / purple back in March (my regular doctor and podiatrist ran tests and don't know why). I wonder if my blue feet have something to do with low blood oxygen. My elevated feet make it more difficult to lie on my side, I think.

Anyway, update on the oxygen assist: I still have no oxygen system. I contacted one of the sleep nurses Tuesday and she thanked me for calling it to her attention (I guess they didn't know that nothing had happened since they submitted the order a week ago). She said I will soon hear from the home health supply people soon (whatever "soon" means). I won't hold my breath.

Thank you again for sharing your experiences with me. They help me to understand what is going on!
Tubaman (Carl)
(This post was last modified: 07-27-2016 01:33 AM by Tubaman.)
07-27-2016 01:30 AM
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BadGoodDeb Offline

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Post: #32
RE: May be Too Late for Me Too
I sleep on my back too. My shoulders cramp up when I sleep in any other position. I only have mild to moderate apnea, but my back-sleeping hasn't stopped me from getting help from my CPAP. I no longer fall asleep at any stop light! So I don't think back-sleeping is completely Anti to CPAP usage, even if it may not be optimal.

Re feet: mine have always been cold, tho that may not be a part of your blue/black issue. I have to wear 3 layers of socks & soft slipper to bed in the winter, and one layer of light bobby socks in the summer. Low circulation, I've always assumed, though I've never asked about it, since it's fixable. But turning blue/black? Yeah, that doesn't sound good at all! Keep calling them regularly (weekly? whatever you are comfortable with) till you get an oxygen system.
07-27-2016 11:45 AM
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Tubaman Offline

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Post: #33
RE: May be Too Late for Me Too
Short update on Oxygen status:
I was told yesterday (Thursday) that I must endure another sleep test (scheduled for next Tuesday). Apparently the one I had in early June didn't satisfy Medicare for unknown reason(s). More fun (not).
Tubaman (Carl)
07-29-2016 01:45 AM
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PoolQ Offline

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Post: #34
RE: May be Too Late for Me Too
hang in there.
07-29-2016 02:28 AM
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Tubaman Offline

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Post: #35
RE: May be Too Late for Me Too
Update (nothing significant has happened):
Had another sleep test last Tuesday. The technician said I did well but that's all she would (could?) say. My oximeter said otherwise. I was under the impression they were going to experiment with oxygen levels to find out how much is needed. The technician said she didn't use any oxygen because my results were good. Again, my oximeter said otherwise. I suspect she was watching my apnea frequency (and not SpO2%) and my apnea level probably was OK so she didn't think playing with the oxygen was necessary (but that's my opinion and it's not based on any facts at this time).

I have had no luck finding anything else out about the sleep test, nor the pulmonary testing I had on June 21. I guess it's all a big secret and I'm not supposed to know anything (I thought this was my body, not theirs...?). That's how it seems to me, anyway.

I'm still using my oximeter every night and I'm regularly getting low SpO2 readings (last night my basal SpO2 was 88.4% and I spent ~181 minutes below 88% overnight). Per SleepyHead I had an AHI of 1.49 which is apparently OK (not great but then I'm kind of old). On the night of my sleep test I had a basal SpO2 of 89.8% (my oximeter) and a time below 88% of 47.2 minutes (my oximeter). Better than last night but the values jump around a lot from night to night and they are always on the low side. I have no SleepyHead data because I used their CPAP machine for that test that the technician was adjusting to secret settings that only she and the doctor know, apparently.

If you folks detect some cynicism in this entry, you're correct (for obvious reasons).

Anyway, sleep well!
Tubaman (Carl)
(This post was last modified: 08-06-2016 02:31 AM by Tubaman.)
08-06-2016 02:27 AM
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chill Online

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Post: #36
RE: May be Too Late for Me Too
The technicians, any medical technicians, are usually under strict orders to not make any comments that might be construed as medical diagnosis or advice. I did have one MRI tech that said "WOW! Have you not had a CAT scan yet?" and then would not say more. So while it is your body, it is their job that is at stake. The doctors not keeping you updated is a different story. Hope you get some useful information soon!
08-06-2016 12:47 PM
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Tubaman Offline

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Post: #37
RE: May be Too Late for Me Too
Thank you chill! I kind of figured that out after most of the technicians would not tell me much of anything over the years for various tests. Now you have confirmed my thinking. Once in a while you can get one of them to say more than they should in which case I try to keep quiet later on (play ignorance) to protect them.

I have a question and there probably is no answer but I shall ask anyway: Is/are there any adjustment(s) that can be made to my auto CPAP machine that will result in an increase in my "Tidal Volume" values"? I did a few quick searches of this forum and did not find anything but maybe I missed it since there is so much information to search through.

I've noticed that my SleepyHead "Tidal Volume" graph profiles are usually very much the same as my oximeter SpO2 % graph profiles. In some cases the graphs could be switched because they are almost identical. This morning I experimented by taking deep breaths for as long as I could (after my sandbox trip and before I fell asleep) and I managed to raise my SpO2% significantly during that entire period of deeper breathing. In the past I've noticed my indicated SpO2% levels rise dramatically when I start breathing deeply and monitor my oximeter's display at the same time. I guess that would make sense since (correct me if I'm wrong) "Tidal Volume" appears to be a measure of how much air I'm breathing in and out, ergo, by taking deep breaths I increase the amount of air going in and out of my lungs.

Anyway, the above is just a thought that occurred to me yesterday.

Thank you for all the information and help. This forum is really a great source of information that my medical sleep "experts" never seem to have enough time (or inclination?) to explain to me.
Tubaman (Carl)
(This post was last modified: 08-07-2016 04:32 PM by Tubaman.)
08-07-2016 04:30 PM
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Sleeprider Online
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Post: #38
RE: May be Too Late for Me Too
Tubaman, tidal volume can be improved through the use of pressure support. Your machine offers up to 3 cmH2O of PS in the form of EPR. That is not nearly what a bilevel machine could offer, but it's all you have at this point. Setting EPR to 3 is the best bet on increasing tidal volume. Beyond that, people with obstructive pulmonary conditions or respiratory resistance can use bilevel machines or even BiPAP AVAPS (Average Volume Assured Pressure Support). You can search online for AVAPS, or read what Philips has to say about http://www.usa.philips.com/healthcare/pr...ventilator .

I think I commented before, your AHI is fine, but your volume is well below normal. This is something worth discussing with your doctor, and is much different from ASV which treats central apnea.

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08-07-2016 09:04 PM
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kwhenrykerr Offline
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Post: #39
RE: May be Too Late for Me Too
I can only give you my history about adding Oxygen. My sleepstudy report said a oxygen low of 64. This was a shock to me. I only had a non-recording meter that read in the 80's when waking and a low 90's during the day.

I add 2L oxygen to my ACPAP and have used oxygen without the APAP after waking for up to 3 hours to get the head pain to ease. It would take 4-6 hours to feel fairly well during the day.

After a few months of adding oxygen I started to see an improvement in my daytime SPO2 (oxygen). I now wake up without head pain and feel better. I think that the added oxygen at night has helped my body do some repair.

My mood is better, I can do more work and life has improved. I too have a sick wife and between the both of us it makes for a challenge.

I would hope that you can get added oxygen support ASAP. I did not wait for the doctors and started using a flea market cpap and oxygen until I could get a prescribed ACAP. I am still waiting on the doctor to add oxygen to the orders. I no longer need oxygen when waking or during the day. That is why I think that some repair work has taken place.

No one has more to gain or loose that I and I take full ownership of my actions. Had I understood better the effects of second-hand smoke, dust, chemicals, being gassed and just stupid I might not be reading this forum. I could be dancing on the beach and having lots of fun.

At this stage I will not give up my oxygen at night as long as helps, and it does help. Good luck to you. Sleep-well

Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
08-08-2016 03:37 AM
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Tubaman Offline

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Post: #40
RE: May be Too Late for Me Too
Thank you kwhenrykerr!
Sounds like your symptoms were similar to mine. I did change my EPR from 2 to 3 as you recommended at least 2ce before. I didn't understand what that was the first time (I'm quite new at this) so I didn't do it the first time you suggested the EPR change. So far (2 nights now) I have not noticed any change in how I sleep, test data, etc.

I'm a little concerned about waking up with head pain. I rarely have any kind of head pain (headache?) so the experience won't be pleasant (no surprise there). If it does happen I hope it wears off quickly.

Maybe someday they'll get around to getting the oxygen to me. The oxygen supply people still don't have an order as of this afternoon (must come from the doctor). I guess it's been this long, a little longer won't make much difference. The damage has probably already started and is well on its way. I suspect that has something to do with my complete lack of endurance when trying to do anything physical. I spend a lot of time resting when trying to do anything so I always keep a chair near by.
Tubaman
08-09-2016 08:10 PM
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