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[Treatment] May be Too Late for Me Too
#41
Oxygen update:
The oxygen generator arrived and was connected yesterday. It was set at 2 liters. I used it last night, entire night, and had my oximeter running all night. I suppose it's too early to tell and maybe some time is needed before anything shows up on the SleepyHead analysis and oximeter data (I saw no improvement in either case). I would have expected some change in the Basal SpO2 % but that did not happen. Also, my AHI was 5.20 last night, highest since July 7.

I suppose it is too early to expect any significant changes (hopefully improvements) so I shall, not so patiently, wait for a while.
Thank you!
Tubaman (Carl)
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#42
Glad to hear about your oxygen, hang in. The oxygen took several weeks for me to get comfortable with. Coffee
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.
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#43
I've now completed one sleep session using the oxygen assist. There was much fumbling around initially to get the setup correct. The setup person wanted to mount the oxygen tube on an added fitting right next to the face mask. I tried one night like that and the oxygen supply tube came loose 2ce so I called the folks the next day and told them their setup would not work. After a long verbal exchange they finally came back and suggested the fitting they supplied should mount at the start of (their supplied) air hose next to the auto CPAP machine. After a little fumbling on my part I finally got it installed as they recommended this time (Why didn't they get it right the 1st time?). They won't send me the manufacturer's heated tube with a fitting until mid-September. They told me I won't qualify for it until then (3 months, I started auto CPAP mid June). I don't understand but won't complain as long as I have a functioning oxygen setup.

Anyway, I've posted combined graphs (events & tidal volume from SH, SpO2 % from my oximeter) for the 2nd part of last night's session. The 1st part of last night's session has the same profile so I didn't bother posting it. I suppose I am jumping to conclusions, but I don't think the oxygen assist is going to work. As soon as I go to sleep my SpO2% drops to around 89 and flat lines there until I awake. Then the SpO2% quickly rises to a very good level (probably because the oxygen assist is working because I'm awake). I find it interesting how my tidal volume chart profile is very close to my SpO2% chart profile even though they were created by 2 completely different systems.

I guess what I think I am seeing is that my tidal volume drops significantly when I go to sleep and my SpO2% drops at the same time. In other words, I need to start taking deeper breaths while I'm asleep.

I don't know what to do at this point. A bipap(?) type machine has been suggested by you folks, however, I don't understand how (if) that would work in my situation. I know that will be a hard sell to all the medical people I am currently interacting with as they are convinced the oxygen assist will correct my problem. I thought it would too -- before I saw the latest charts from SH and my oximeter.
Once again I thank you for all your help and encouragement!
Tubaman (Carl)
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#44
Your tidal volume is low, and respiration rate is relatively high. I'll stick by what I said in post #38 http://www.apneaboard.com/forums/Thread-...#pid171689 Really, you need to see a pulmonologist to discuss this, and see if bilevel or AVAPS is right for you. Your tidal volume can be increased through pressure support and possibly spontaneous/timed therapy. Your current sleep specialist does not seem very tuned into this issue, or you have not communicated your concerns in terms he understands. As a root cause, we have not discussed COPD in this thread, but your symptoms of poor tidal volume, high respiratory rate and low SpO2 would be string indicators of a restrictive pulmonary condition.
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#45
Since November 2014 (when I collapsed in our front yard after a 1+ mile walk), the medical people have run a battery of tests on me. I've had a stress test (treadmill), e.k.g. (at least 1), echo cardiogram, 2 sleep tests, pulmonary test, regular blood tests, circulatory system tests (mostly my legs & ankle area), and I cannot remember if there were any other tests.

I am still waiting for the results of my pulmonary tests (I was tested July 21). I have an appointment September 16 with the pulmonologist. I cannot get an earlier appointment. Currently, nobody will tell me anything about my pulmonary test results so I must wait. For that matter, after several attempts, I cannot get my sleep ENT (nor anybody else) to give me some details or, at the least, test result summaries on any of the recent testing I've had. All I get are orders to use certain kinds of equipment, pre-set at mysterious levels, for my therapy.

This past "night" was my 1st uninterrupted auto CPAP sleep session with oxygen assist which resulted in SpO2% chart profiles quite similar to the chart I previously posted. I detected a tiny elevation in the SpO2% "flat line" level (ran 90% to 91%) with the usual higher erratic readings when I was awake. I hope this is a positive trend but I won't hold my breath (pun intended). It's too small to mean anything significant but it's trending in the right direction (if it's trending at all and not just statistical data variance from day-to-day).

FYI, Tubaman
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#46
It took me about 30 days to think that the added oxygen had helped do some healing. I began to see an improvement in my oxygen level when not wearing any oxygen. Hang in and give yourself some time. Good Luck and 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.
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#47
you have several things going on:
1. your current setup "may" work if given more time (Doctors always think this)
2. your O2 levels are not that low, no emergency.
3. your pulmonary tests did not show an emergency either or you would be getting in sooner.
4. If you test for COPD they know right away-lung volume is larger than "normal" and you respond to the test treatment they give you during the test. Again if it was an emergency they would have hand carried the results to the Doctor and in any case the Doctor most likely reviewed your results that evening.
5. you can get the low tidal volume from (at least) two reasons-a. you are fighting the CPAP machine, in this case perhaps a BiLevel would help OR b. you have a weak inhale, in this case you would need an ASV machine to assist you in taking a deeper breathe.

When you meet with your pulmonologist make sure you separate the SA from the low O2 and tidal volume. you are crossing responsibilities and SA is ONLY for the Sleep Doctor, if your pulmonologist decides that everything about your situation is related to SA they will most likely just refer you back to the Sleep Doc. If the SA is treated then state that clearly-it's done! Your problem is not related to sleep, it is a tidal volume problem and it happened while you were awake and passed out in your front yard.
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#48
Consider getting a spirometer ($40 from the internet, Microlife model # PF100) since it can tell you a lot about the condition of your lungs. It was my first tip off to the emphysema that is bedeviling me now. I confirmed the diagnosis by making my pulmonologist somewhat richer. I got the same lack of service from mine pulmo that you're experiencing with yours.

My current spirometer readings are:

PEF = 250 liters/minute
FEV1 = 1.5 liters (this is the most important reading and the one to monitor for impending exacerbations)

That puts me at the bottom of the moderate/severe category. I can do normal activities but moderate exertion gets me winded.

Dude

The Microllife isn't a full blown spirometer and is actually tailored to asthma sufferers but still useful for others.
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#49
PoolQ:
When I collapsed in our front yard (11/27/15), at no time did I pass out (I'm unsure if that's what you're saying). I was conscious the entire time. All my muscles lost all their strength and I could not move myself (crawl) or pull myself up by grabbing a nearby tree. In fact, for the first few moments I could not reach up with my arms -- they had completely lost all their strength (like my legs, neck, anything requiring physical effort to move). I was wearing my oximeter when I collapsed and it gave me some data before I hit the ground. Its readings were questionable after I was down because it probably got shaken up a bit when I hit. FYI: My oximeter had my SpO2% flat lined at maximum for about 15 minutes (probably 99%) and my pulse had climbed to about 170 bpm (too high for my age) when I fell. After that the readings were erratic for a few minutes (as was I because I couldn't move much).

Question:
Is it possible to know if I'm fighting my auto CPAP machine: If so could I figure out how am I doing it?

surferdude2:
The spirometer you suggested sounds like it might be a good idea. I just looked it up so I could understand what it does and it looks promising.

kwhenrykerr:
Thank you for the continued encouragement! As usual I always want my results immediately and I'm starting to realize that won't happen -- but 2 months??? Much of what's going on, especially now with the oxygen assist, will probably take time (like the initial auto CPAP AHI gradual reduction that happened).

Thank you all, very much! At least I think I've learned a whole lot more about respiratory problems than I ever knew before thanks to this forum and the knowledgeable folks making it work.
Tubaman (Carl)
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#50
If we do not Help each other who will ? Carl I learn from your questions and Thank You for asking. 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.
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