Sleep study pressure results vs real world rquirement

[jonnybee]

FWIW.

Initially, I was issued a ResMed S8 CPAP set at 5cm as determined by sleep study. After joining this forum, I realized I had been issued a unit with no data capability so I pushed for an S9 series machine and was issued an S9 Elite CPAP, again set at 5cm. My AHI was erratic over the next three months while using the Elite with a high AHI of 12.2 with several in the range of 6.5 to 7.0. During the last month of using the Elite set at 5cm, my average AHI was 3.4.

Having read many posts here concerning the advantages of the the APAP, I decided that if I was ever going to get the AHI down, I would need an APAP since the Elite set at 5cm did not seem to be doing the job. DME told me I would have to pay $300 out of pocket to get a new S9 Autoset which I didn't feel was that unreasonable since they had upgraded me from the S8 to the S9 at no cost. I paid the $300 and was issued the S9 Autoset. Initial setting was 5.0-11.0. I have since bumped the min pressure up to 6.0 since the 95th pct was running near 8.0. My AHI average since starting to use the Autoset (2 weeks) has been 1.5. For the last two nights (since bumping the min up from 5.0 to 6.0cm) my AHI average has been 0.6 (0.4 last night; my lowest ever). Other stats for the last two nights pressure were Median 6.4, 95th pct 7.6, Max 8.8. This tells me that the sleep study results were off base which does not surprise me at all given the artificial conditions under which the study is conducted.

Moral of this story. You have take charge of your therapy. I have received ZERO assistance from the DME because the nurse just does not have the knowledge/training required to be of assistance. I actually had to show her how to download my info into ResScan. My family physician, who ordered the sleep study at my request, was of no help; totally clueless regarding sleep matters. She has since left town. There are no REAL sleep doctors near me; only a few whose sub specialty is sleep medicine. So, if I had not taken it upon myself to join this forum and learn as much as I could, I would still be sucking on the S8, totally clueless as to whether the therapy was working or not. Thanks to all who post here.

[roster]

Good, classic story!


See also: viewtopic.php?f=1&t=60874&st=0&sk=t&sd=a

[tschultz]

Thanks for sharing your story. I'm glad to hear that things are better now, good for you!

I fear that there are a large number of people with treatment that is "less than optimal" and never know it.
I truly believe that each and every machine should be as a bare minimum be fully data capable and ideally be capable of auto-titrating as well.

[EricinNC]

Unless you have extremely good health insurance, just bypass your insurance. And go by a brand new APAP from a reputable Internet dealer. Pay out of pocket. Ive got two APAPs now, both new. One I paid out of pocket for, cost me over a thousand with the humidifier. The other is high end and I got from my local brick and mortar DME thru insurance. But I had to fight, scrap, almost get into a physical fist fight to get it. It was not a fun experience.

So just bypass the insurance because they dont want to pay for anything except the cheapest, cruddiest gear they can give you. And buy out of pocket. Buy what you KNOW you need. Also, a lot of sleep doctors will at first tell you "oh you dont need an APAP" and talk it down. But once you get one, they like it I have found. One admitted to me it was what he used.

Its all about money dude and these insurance companies and DMEs have a built in conflict of interest with regards to your optimal health. The way they make the most money is by giving you the CHEAPEST, crappiest, equipment they can legally get by with. But that gear may not be what is optimal for YOUR health. So take matters into your own hands. Its what I do and its a lot less stressful.

Eric

[jbn3boys]

Moral of this story. You have take charge of your therapy. I have received ZERO assistance from the DME because the nurse just does not have the knowledge/training required to be of assistance. I actually had to show her how to download my info into ResScan. My family physician, who ordered the sleep study at my request, was of no help; totally clueless regarding sleep matters. She has since left town. There are no REAL sleep doctors near me; only a few whose sub specialty is sleep medicine. So, if I had not taken it upon myself to join this forum and learn as much as I could, I would still be sucking on the S8, totally clueless as to whether the therapy was working or not. Thanks to all who post here.

I'm glad it worked so well for you. But that is not the moral of the story, and it does not work for everyone. After four months of trying to tweak numbers on my apap, with the help of many of the kind people on this forum, I was still having numbers all over the place, mostly in the 6-15 range for AHI. I only had a few, rare nights with AHI less than 5. I finally got a referral to a doctor who has "sleep apnea" as one area of interest. No, she is not an actual "sleep doctor", but she does deal with sleep apnea. After nearly 3 months with her, I am still trying to get this whole xpap thing to work, and to start feeling better. It has been, and probably will continue to be, a very long process for me.

My case is not the norm, but there are others like myself. I agree that we need to be our own health care advocates, but we can't always do it on our own, or with the help of this forum. Sometimes we NEED the help of specialists, even if they "specialize" in many different things.

[roster]

Moral of this story. You have take charge of your therapy. I have received ZERO assistance from the DME because the nurse just does not have the knowledge/training required to be of assistance. I actually had to show her how to download my info into ResScan. My family physician, who ordered the sleep study at my request, was of no help; totally clueless regarding sleep matters. She has since left town. There are no REAL sleep doctors near me; only a few whose sub specialty is sleep medicine. So, if I had not taken it upon myself to join this forum and learn as much as I could, I would still be sucking on the S8, totally clueless as to whether the therapy was working or not. Thanks to all who post here.

I'm glad it worked so well for you. But that is not the moral of the story, and it does not work for everyone. After four months of trying to tweak numbers on my apap, with the help of many of the kind people on this forum, I was still having numbers all over the place, mostly in the 6-15 range for AHI. I only had a few, rare nights with AHI less than 5. I finally got a referral to a doctor who has "sleep apnea" as one area of interest. No, she is not an actual "sleep doctor", but she does deal with sleep apnea. After nearly 3 months with her, I am still trying to get this whole xpap thing to work, and to start feeling better. It has been, and probably will continue to be, a very long process for me.

My case is not the norm, but there are others like myself. I agree that we need to be our own health care advocates, but we can't always do it on our own, or with the help of this forum. Sometimes we NEED the help of specialists, even if they "specialize" in many different things.

Your case is not in conflict with jonnybee's point and in fact supports it. You took charge of your therapy, educated yourself, sought help from a patient forum, used a data-capable machine, and tweaked your therapy.

The typical patient, who does not do all of what you did, would either assume "that is as good as it gets" or drop out.

But you, having done all that you did, knew to seek additional professional help. And the professional help you sought likely did not brush you off because they could see they were dealing with an educated and determined patient who had data to back up her statements.

Good job! I hope you are soon to resolve your issues and achieve an excellent therapy.