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[Treatment] May be Too Late for Me Too
RE: May be Too Late for Me Too
Thank you for the detailed explanation.  After reading it a few times, things are becoming a bit clearer, I think.  It should be helpful information for the pulmonologist -- if he doesn't start thinking I'm trying to do his job, that is.  I need to puzzle out a tactful way to tell him and I'm not always so good at tact.

Your comment: "You also have a low tidal volume and twice your normal breath rate. For some reason while asleep."  I wonder if my normal breath rate under normal conditions is actually around 12 bpm (or whatever it's been).  I was breathing with the supplemental oxygen at the time we looked at it which would have assisted my oxygen intake and maybe reduced my normal awake breathing rate.  I wonder if the oxygen had been off, all other factors remaining constant, if my normal breathing rate would have been higher.  That would probably be a difficult test to perform.  Even if I could do it (forget to control my breathing, breathe natural), my wife would have to turn on my O2 concentrator after I fell asleep and that might be difficult for her to do.

She currently tries to check to assure the concentrator is turned on when I'm sleeping (I forget occasionally).  When I forget, my %SpO2 level drops significantly (stays below 88% at times) while I'm asleep and when she turns it on it rises back to where it usually is.

Just some musings on my part.

Thank you again for the detailed, helpful explanations!  I hope all is going OK with your father.
Carl/Tubaman
"We run as fast as we can.  To get as far as we can.  So that when we finally get there we have that much further to run to get back to where we should have been."
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RE: May be Too Late for Me Too
I thought you didn't use o2 during the day? Just at night.
You could stop daytime o2 for 3 hours. For the o2 level to normalise, or as long as you can comfortably. Check as you go with spo2, that it doesn't fall under 88. Then test your o2 level and breath rate. It will also be good data for the doctor.
mask fit http://www.apneaboard.com/wiki/index.php...ask_Primer
For auto-cpap from machine data, or software. Set the min pressure at 'med' median pressure or 90% OR 2cm below 95% pressure. max pressure at 20cm for now. Forum will help you fine tune settings
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RE: May be Too Late for Me Too
I've never used oxygen during my awake hours, I only use oxygen when I'm sleeping, or trying to sleep (I have serious insomnia).  My awake (not necessarily daytime) %SpO2 levels are OK.  I posted a chart (#192, April 16) of ~3 hours %SpO2 levels during normal awake activity showing a basal %SpO2 of 94.3%.  Since I was not attached to my CPAP system that time, I have no way of determining my respiration rate while I am awake and doing regular activities -- as I was on April 16.

This awake breathing incident I was talking about in my previous posting happened when I could not get back to sleep after a sandbox break and I was lying in bed, CPAP + O2 running, awake and scrolling through my phone looking for another Agatha Raisin audiobook to try to help me get to sleep (frequently a serious challenge for me).  I was breathing normally, not trying to alter my breathing at all, not thinking about my breathing, ergo, the ~12 bpm natural respiration rate for about an hour -- with oxygen assist.

I'm questioning whether the O2 assist at that time could have resulted in me having a slower respiration rate than I would have had sans oxygen.  That test would be very difficult to repeat because I would probably be thinking about my breathing thus altering my respiration rate.

I posted a chart on April 24 (posting #215) that contains this 1 hour, or so, of awake breathing that had the respiration rate of mostly around 12 - 13 bpm.

Thank you.  I'm sorry I am confusing you.  It's difficult to define exactly what is happening when we're on opposite sides of the world.
Carl/Tubaman
"We run as fast as we can.  To get as far as we can.  So that when we finally get there we have that much further to run to get back to where we should have been."
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RE: May be Too Late for Me Too
That makes sense, I didn't think you had o2 during the day. I think I got it wrong. I remember the awake reading when you were on cpap/o2. I also thought it was said that it was 12 breath during the day.
Ask your wife to count your breath for a random minute as you watch TV. You need to be distracted for a true reading.
mask fit http://www.apneaboard.com/wiki/index.php...ask_Primer
For auto-cpap from machine data, or software. Set the min pressure at 'med' median pressure or 90% OR 2cm below 95% pressure. max pressure at 20cm for now. Forum will help you fine tune settings
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RE: May be Too Late for Me Too
Have you considered  oxygen tank  therapy? Might not be sexy but might be a last resort in your situation.
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RE: May be Too Late for Me Too
Your suggestion: "Have you considered  oxygen tank  therapy?"

I don't understand.  I am already using an adjustable oxygen concentrator currently set at 3.5 lpm.  What would an oxygen tank give me that the concentrator doesn't?

Thank you!
Carl / Tubaman
"We run as fast as we can.  To get as far as we can.  So that when we finally get there we have that much further to run to get back to where we should have been."
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RE: May be Too Late for Me Too
FYI:
I met with the sleep doctor / pulminologist yesterday.  After I tried to explain that I was concerned about high respiration rate and low tidal volume, all he had to say was that my current CPAP results were good and I should not need oxygen assist at all and he was going to take me off oxygen.

And that comment sent me 'off the rails'.  Since he had never met with me before and most likely had not reviewed my history (dangerously low %SpO2 levels with good AHI levels before oxygen assist), he started talking about taking me off oxygen completely.  I proceeded to tell him that I've never had any correlation between the AHI levels and %SpO2 levels (as I've previously mentioned in this forum).  I referred him to my original %SpO2 overnight test (7/6/2016) with my CPAP running and no O2 which resulted in more than 300 minutes below 88% basal SpO2 level (considered bad, sleep center oximeter's result).  That night I had a corresponding AHI level of 1.72.

With that bit of enlightenment, he decided to leave me on oxygen assist (big surprise).

I once again mentioned my high respiration rate and he said that did not concern him.  He reviewed the CT scans of my lungs from a couple of years ago (showed them to me) and said my lungs looked good / normal -- no 'snowstorm' speckles evident as I was previously told (I asked).

Two supposedly expert pulmonologists with two different conclusions -- gives me lots of confidence in our medical system (not!).

To summarize: No changes.  He mentioned a motto which I do agree with: "If it works, don't fix it".  The set-up I'm using appears to be working well and needs no changes, i.e., bilevel CPAP for example.  He felt that the bilevel machine might not work for me to get me off the oxygen.  He felt there is nothing wrong with using the oxygen system as my current O2 levels are good and I am not getting O2 levels too high with it (which would be his concern).

One question:
Is the lack of correlation between %SpO2 level and AHI level so unusual?  Even this so-called expert did not seem familiar with this condition.

And so it shall be, I shall carry this no further (not worth the stress + anxiety for me).

It's fine with him if I tweak my CPAP settings from time to time.  I don't think he even knows what advice to give me (he didn't give me any when I was there).

Thank all of you for all the help you've given me!  I have learned much about how the CPAP system works, however there is much more to learn.  This will have to do for now.

Carl / Tubaman
"We run as fast as we can.  To get as far as we can.  So that when we finally get there we have that much further to run to get back to where we should have been."
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RE: May be Too Late for Me Too
(04-12-2019, 07:52 PM)Tubaman Wrote: Mr. Sleeprider:
As I mentioned in my previous posting, I already have supplemental oxygen (since August 2016).  I just forgot to turn on my concentrator and spent the night without the supplemental oxygen -- by accident / my forgetfulness.

My point is that many people appear to be relying on good AHI levels only as the prime indicator of keeping their blood oxygen levels up.  That is not always true as can be seen by my charts.  I had a good AHI level and yet my blood oxygen was below the minimum red line (danger) level for more than 74 minutes last night, April 11.

This was why they put me on supplemental oxygen back in 2016.  My sleep doctor and his nurses had a hard time accepting the fact that CPAP did not improve my blood oxygen levels until it was proved using the sleep center's pulse oximeter (they would not believe my pulse oximeter's data which is typical of the medical profession in general).  Their oximeter showed me below the 88% red line for more than 300 minutes that night in 2016 (mine, mounted on an adjacent finger that same night, only indicated slightly more than 200 minutes below red line).  Then they finally believed me and I got the oxygen.

Thank you, Carl/Tubaman

I have not contributed to this thread since February, and back then we were discussing some of these respiratory issues and I asked about supplemental oxygen. You provided the reply above.  Not much has changed and you seem to have found what works best for you.  Your high respiration rate, FEV1/FEV2 and all the other things a pulmonologist normally looks for seems to meet his expectations. Maybe it's working as well as possible for you?  

We are 24 pages into this thread, and I think progress has been made.  I just don't know what to suggest other than to continue as-is, and apparently your doctor agrees.  I'm not trying to discourage you from trying to improve things further, but I'm unclear what else we can do, especially given the inertia from your medical doctor.
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RE: May be Too Late for Me Too
So no explanation or idea why your respiration rate doubles when you are asleep? I don't think it's a physical issue with the lungs, given your awake stats. A guess is it's some neurological hiccup.

Yes you can have bad o2 and good ahi. O2 levels that are independent of AHI, stay at the same rate for a while. Apnea decreases of o2 are specific to the apnea and are spikey. How low o2 is treated on apap is min pressure is raised to what would be cpap fixed pressure, it can be further raised if needed. my personal view is that a lab should be setting this up for you.

I would continue on the path of reducing the sensitivity to pressure, raising start and min pressure and finishing at the 95%, 95% or fixed cpap around this number is really basic for o2 levels and is where apap with low min pressures falls down in some people.

Then review how much extra o2 you need. You know to keep your night time o2 levels similar to your day levels and not to over oxygenate at night, both can improve over time.
mask fit http://www.apneaboard.com/wiki/index.php...ask_Primer
For auto-cpap from machine data, or software. Set the min pressure at 'med' median pressure or 90% OR 2cm below 95% pressure. max pressure at 20cm for now. Forum will help you fine tune settings
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