O2 Dissagreement with Doc. (long)

[sdurbin]

The story (so far):
Patient’s Perspective:
In 2010 Feb. an allergist diagnosed me with Obstructive Sleep Apnea and scheduled me for a sleep study. Based on confirmation of the diagnosis he prescribed CPAP. I reviewed the study report and some things did not add up. I didn’t think the test was very scientific and I didn’t feel like I was getting a “normal” sleep. Prior to applying CPAP I had an:

AHI/hr: 73.8
Avg. SaO2: 88%
Min. SaO2: 79%

The tech. Applied 5.0-16.0cmH2O and I had:

AHI/hr: 81.4
Avg. SaO2: 92%
Min. SaO2: 80%

When I showed up to take possession of the CPAP machine I told the representative that I did not want to take the machine until I got another opinion. My minimum O2 was still below the warning limit (89-91 depending on your insurance), did not improve significantly and my AHI (events) got worse with CPAP therapy! The representative said it probably indicated central apnea and said, “Good catch!” We marched downstairs to the doctor’s office and he said that my O2 levels were low because I was so obese that I can’t breath properly lying down. I am 6’ 220lbs and used to bodybuild (bodybuilding invalids traditional BMI charts), that makes me only about 20lbs overweight. The doctor also runs a weight loss clinic, what a scam. I officially fired the doctor with a letter for; incompetence on this, incompetent allergy testing and rude, unprofessional comments. My General Practice physician referred me to a Pulmonologist.

Armed with a copy of the sleep study report I explained the situation to the Pulmonologist and my issue with the report versus the diagnosis. He diagnosed it as CPAP induced central apnea due to the pressures they took me up to, central apnea events started at pressures above 10cmH2O. Taking me up to 16cmH2O, “They tried to turn you into the Michelin Man,” he laughed. I liked this new doctor. He prescribed CPAP and I got the S9 AutoSet through the original sleep lab representative, as it seemed the right thing to do. Meanwhile, this sleep lab representative to whom I had pointed out the discrepancy asked an equipment dealer friend of his to do a free overnight oximetry. I did the study at home and based on the results he talked my General Practice Physician into signing a prescription for O2 titration. I received a machine, delivered to my home and started using it. On my next visit I shared this information and the O2 study with the Pulmonologist and he did not think that I needed O2 and said to send it back. So, the equipment dealer had me do another overnight oximetry and ran a report to take to the Pulmonologist. The difference was obvious to me, on CPAP alone my:

Basal SpO2: 90.1
Min. SpO2: 77.0

On CPAP with 2LPM O2 my:

Basal SpO2: 95.3
Min. SpO2: 89.0

I am no expert but the data doesn’t lie. I bought an oximeter, paid too much for it at a local Medicine Shoppe, and tried to confirm O2 levels each time I woke up in the night. This is almost impossible to do but I remember seeing some low numbers so I confirmed in my own mind that the equipment dealer wasn’t falsifying the O2 reports. I took these reports to the Pulmonologist on my next visit. He glanced at the reports and shrugged it off. I paraphrased some Buddha, “Never believe anything … unless it agrees with your own reason.” I respectfully disagreed, so he took another look at the reports. He said it didn’t make sense to him and that I had to do another sleep study in his lab. Before CPAP was applied:

AHI/hr: 33.6
Avg. SaO2: 89%
Min. SaO2: 80%

At 12cmH2O central apneas appeared. At 7cmH2O I went into Deep Sleep:

AHI/hr: 0.0
Avg. SaO2: 94%
Min. SaO2: 93%

The Pulmonologist diagnosed CPAP induced central apnea, continued use of the AutoSet CPAP and no oxygen needed. This makes sense, except, what about the O2 study I did at home (min. 77%) on AutoSet CPAP? His answer was that it takes a while for the body’s CO2 sensor to adapt and the oximetery tests were done too soon. Maybe, but I would need another oximetery test to verify.

My AutoSet pressure usually runs a median of 4.5cmH2O with a Max. of 7.3cmH2O, AHI 1.2 so the low O2 readings do not appear to be caused by obstructive or central apnea (the S9 AutoSet detects both). The doctor says I don’t need the O2 but the data seems to indicate that I do. Time is probably running out to return the O2 Concentrator. The sleep study is diagnostic in nature and I was only at the ideal pressure, 7cmH2O, for 35.4 minutes. This is why I think the sleep lab is not a good diagnostic tool. I am uncomfortable and am not sleeping normally, they are changing the parameters too often to catch significant events that may only happen a few times a night, and you can not take a measurement without affecting the measurement. At this point, if I wanted to figure out the mystery, I was on my own. I bought the CMS50E which is a data recording oximeter with software and proceeded to perform an all night oximetry test the first night after I got it. Without reading the instructions. Frustrated that there was no data recorded, the next day I read the instructions and set the device to record the next night. Event/hr is as reported by the oximeter.

Date _________ CPAP ___ O2 ___ Adj. Events/hr _ Basal SpO2 _ Min. SpO2 _ Time(min)<88%
2010 Oct. 2-3 __ off ____ off ____ 38.4 _________ 89.0% _________ 68.0% _______ 146.2
2010 Oct. 3-4 __ on _____ off ____ 20.0_________ 93.0 __________ 74.0 __________ 4.7
2010 Oct. _____ on _____ on _____ 2.3__________ 96.0 __________ 67.0 __________ 0.6
2010 Oct. _____ off ____ on ______ 8.6__________ 95.0 __________ 79.0 __________ 1.8
(Had to use _ ‘cause TAB doesn’t work)

Note: I didn’t sleep from approx. 1-3am Oct. 3-4, maybe I’ll redo this one.

I laid these out and asked my wife to pick one. The best is obviously both CPAP and O2, if I had to give one up it should be CPAP and keep the O2.

Conclusions:
CPAP is not a scam. It not only helps eliminate obstructive apnea, the open airway test on the S9 tends to wake me up like an alarm during a central apnea. I think that is probably an unintended/undocumented feature.

Every CPAP user should periodically check their treatment effectiveness with an overnight oximetry study.

If Apnea isn’t causing all of my O2 events, some unknown/undiagnosed condition is.

“Never believe anything you hear or read, no matter who said it, not even if I have said it, unless it agrees with your own reason.” – The Buddha

[snnnark]

Hi, on your table, are the adj. events / hr from the oximeter or the S9?

Personally, I would prefer to spend the least amount of time under 88% so I'd go for both CPAP and O2!

[M.D.Hosehead]

sdurbin,

I think you are right to be concerned at the amount of desat you have (untreated). And to grab this problem like a terrier and not let go until you are satisfied with the answers.

If I understand the conditions correctly, the desat recorded during the on-on night looks suspiciously like an artifact. It would mean the O2 saturation in your blood dropped from 88 or more to 67 and then back up to 88 or more, all in 36 seconds, which doesn't seem possible. Put the oximeter on while awake, hold your breath (artificial total apnea) and see whether you can come anywhere near that rapid desat and recovery. If I'm right about this, then in the on-on condition you actually had 0 desaturation.

I would surely want to keep that concentrator until I was positive (from further observation) that CPAP alone, or maybe switching to ASV, was sufficient. I realize that's an expensive option, but then, how much are your neurons worth to you?

[jnk]

Is the pulmo acting only as a sleep doc with you, or is he giving you the full PFT testing your situation may require?

[sdurbin]

snnnark: Hi, as stated, the Adj. Events/hr are as reported by the oximeter.

M.D.Hosehead: I am ignoring outliers and therefore paying more attention to the overall SpO2 graph rather than the minimum SpO2. The difference in the graphs is startling.

jnk: I don't know what PFT is but the pulmonologist is respiration only and is only looking at my sleep apnea.

Thank you all for your comments, they are very important to me in deciding how to approach the doctor on this. Ultimately it is my choice to keep the O2 and I want to be respectful in how I answer when he asks me about it. I think my data collection backs up my decision quite strongly.

[jnk]

. . . what PFT is but the pulmonologist is . . . only looking at my sleep apnea. . . .

Sorry about that, sdurbin. Abbreviations are easier to type.

http://www.valleyhealthlink.com/upload/ ... 20Test.pdf

[sdurbin]

. . . what PFT is but the pulmonologist is . . . only looking at my sleep apnea. . . .

Sorry about that, sdurbin. Abbreviations are easier to type.

http://www.valleyhealthlink.com/upload/ ... 20Test.pdf

My allergist (whom I fired) did similar breathing test, before and after an inhaler. I don't have a copy of the test but the technician said that I did much better than most people and an inhaler did nothing to improve my breathing ability.