Another sleep apnea "victim"

[SuperDave]

I say "victim" because the business of sleep medicine is more like a circus than science or medicine...Here's what I mean: It seems to be a common practice for doctors to accept patients who need sleep treatment to rush the patient through their office, get a sleep study, then pass them off to a DME, never to speak with them again or to follow up with any adjustments or tweaking of the prescribed treatment. My experience with 2 local medical practitioners is that they show no interest in patient education and in resolving the patient's illness.

[First Long story follows]

In 2011, my wife pointed out that every time I watched a football game on TV, I fell asleep. The issue was the snoring and choking sounds while napping in a recliner. She said I would stop breathing and it was frightening to observe. She suggested I might be suffering from a disease I was unfamiliar with: sleep apnea.

So I dutifully looked up pulmonology doctors and called a clinic in Tyler, TX, a town in East Texas, known locally for its hospitals, clinics and doctors of every type. I found a pulmonary clinic that advertised sleep medicine. The clinic also housed a sleep study lab. I naively made an appointment with the doctor. When I arrived at the clinic, the doctor's Physician's Assistant (P.A.) saw me, instead of the doctor. During the 5-minute doctor's appointment, the P.A. explained I would need an overnight sleep study, and she made the appointment.

Several weeks later I went through the process, where the sleep technician attached wires to my head and chest, and then monitored me while I was sleeping. At 4:00 AM, the sleep tech woke me up and said "You may as well go home now." I asked if he was able to get some useful information and he replied "yes", and then added "you're a sick, sick man." I kidded back "I know, did I do anything embarrassing during the night?" We laughed and I left.

Several days later I got a phone call from Home HealthPatient to make an appointment to pick up a CPAP machine.

So far I have not spoken with a doctor, seen the results of the sleep study, nor has anyone informed me what is going on or what to expect next...

The person at Home HealthPatient explained the doctor prescribed an Auto adjusting CPAP. We tried on several masks, I signed some paperwork for insurance to pay them directly, and they sent me home with a brand new ResMed S8 Autoset CPAP machine, H3i humidifier, and a Respironics Optiva Nasal Pillow mask.

I faithfully used the CPAP for the next 15 months (without noticing any significant improvement) before eventually losing interest and discontinuing treatment. No one from Home HealthPatient ever sent me a smart card to check the data. I never heard from the clinic or anyone else, EXCEPT, as you might expect, I did get a long distance call every month to inquire if I needed any supplies.

...end of story through 2012...

[Long Story #2 to follow]

[SuperDave]

FAST FORWARD TO NOVEMBER 2018.

I am retired, age 70, happily married, and still take naps during football games. I feel so tired and run down all the time. Tired when I wake up, tired when I go to bed, and tired all the time between...but hey, I'm retired, so no big deal, right?

So I find my old CPAP machine and think, maybe I need to start using it again...but does it still work? Is it safe to use?

I take it out of the case, clean it up, check the hose and mask, and turn it on. Seems OK, but the elastic mask straps need replacing. i bought new straps and nasal pillows on eBay, and ready to try out. After several days, everything seems to work. Then I think, "maybe I should contact Home HealthPatient to reorder supplies. Nope, they were bought years ago by LinCare.

So I try to contact the pulmonary doctor. Nope, not in business. I do more stealth work on the internet to find out that the doctor went out of business several years ago. I call several pulmonary clinics to find out if that doctor is still around, and learn that no-one has been able to obtain old patient records or sleep studies for several years now...

I learn that if I want supplies (to be paid by medicare), I will need a new prescription. So I call another pulmonary clinic to see a doctor who specializes in sleep illnesses. When I make the appointment they tell me to bring in my CPAP machine at the time of the appointment.

I see the doctor and the first thing he asks me is "why are you here and what would you like to talk to me about." So I explain my history with the CPAP treatment from 8 years ago, that the old sleep study is lost, and that I am pretty sure I still need treatment for sleep apnea.

He takes a few minutes to explain apnea, hypopneas, sleep stages, etc., then explains that he will need to see the results of a new sleep study. He explains there will be several office visits to get everything worked out. And he tells me he will have someone from the sleep lab contact me to set up the sleep study.

I asked about the old CPAP machine and he has a technician in his office read the data that was still saved on the machine with ResScan. When they bring him the printouts of the data, we are both amazed to learn that the AHI's were averaging 70+/hour, over the original 15 months. (The machine mode was set up as AUTO, minimum pressure was 4 and maximum was 20 cm/H2O, EPR was 1, average 95% pressure was 10.8 cm/H2O.) Clearly the auto CPAP was not adequately addressing my sleep apnea events.

In December I underwent another polysomnogram procedure, a split study. The sleep technician gets enough data during the first half of the night to try titration. The next morning she tells me she was unable to stop the apneas in the time available, and that I will hear from the doctor's office, sometime in a week or two, about the results from the polysomnogram.

Two weeks later, the doctor's office calls and says they have the results and I will need to schedule an appointment, the soonest available date is on January 8, 2019.

When I go to the appointment, I see the doctor's P.A., not the doctor. She asks if I received the new machine from RoTech yet? I replied, " HUH? No." (I'm still waiting for the results of the sleep study and have never heard of the DME before.) So she says, "let me check", and leaves the room. After a few minutes she returns and says "they said it is usual for it to take a couple of weeks after receiving the doctor's order...they are probably working with the insurance."

So I asked about the results of the sleep study and she says,"you had 84 apneas and hypopneas per hour, and your lowest oxygen saturation was 86%." I asked what was the prescription, and she replied, "an auto bipap at 5-20". I requested a copy of my sleep report and a copy of the prescription.

[SuperDave]

[more detail]

after reading this forum I became aware CPAP machines may have useful historical data stored in memory. I learned mine could be accessed via a proprietary ResMed smart card, a proprietary card reader and a copy of the ResMed ResScan software.

Unfortunately, this old machine cannot be used with Sleepy Head.

So I acquired the old obsolete items from eBay and have access to some amazing data all the way back to the beginning of this journey, back to January 2011!

And I am amazed how badly my sleep apnea has been, even while using a CPAP. I would like to share some of the ResScan data in future posts, if anyone cares to see, comment and offer suggestions for getting back on track for treatment...

[SuperDave]

Excel Spreadsheet summarizing data from 1st month of machine usage, jan/Feb 2011

[SuperDave]

current cpap data, dated Dec/Jan 2019

[SuperDave]

Here is a recent Rescan chart/summary

[SuperDave]

Sleep Study Summary

[SuperDave]

page 2

[SuperDave]

So, after 8 years of unsuccessful treatment with an auto adjusting CPAP, set at 4 cmH2O minimum, 20cmH2O maximum, EPR 3, which allowed AHI=40+, the new doctor wants me to buy a new BPAP Auto, set at 4-20. The sleep study clearly shows CPAP and BiPAP were unsuccesful in treating my apneas/hypopneas. Anyone else have a problem with this recommendation? Is the pattern for treatment less than optimum?

[palerider]

So, after 8 years of unsuccessful treatment with an auto adjusting CPAP, set at 4 cmH2O minimum, 20cmH2O maximum, EPR 3, which allowed AHI=40+, the new doctor wants me to buy a new BPAP Auto, set at 4-20. The sleep study clearly shows CPAP and BiPAP were unsuccesful in treating my apneas/hypopneas. Anyone else have a problem with this recommendation? Is the pattern for treatment less than optimum?

A question!

4-20 isn't a valid bilevel setting. Or an effective setting for anyone. It's just a starting point to gather data and make pressure adjustments.

[Chris8243]

Wow! And not in a good way. Looks like you have been totally ignored by your docs and no one has ever followed up or had an interest in helping you. When you first got the machine did you have a 30-day follow up appt with sleep doctor (or PA)?

Do you have a primary care doctor? Have you ever talked to them about your sleep apnea?

You posted while I was writing, lol. I'm no expert, but the default automatic pressure settings of 4-20 is not adequate for you. Clearly you need to start at a pressure higher than 4. You'll have to post Sleepyhead data here to get input from the pros.

[SuperDave]

original cpap, bought under employer's health insurance, was not required to have a 30 followup by the doctor. infact, there was never any followup. My primary care dr. does ask very 6 mos. if I am using the cpap. I always tell him, no, but I learned to sleep on my side instead of supine. (I assumed my S A was controlled by the side sleep position...until I learned to use the ResScan software. Now I'm acutely aware that it has not and is not being treated!)

[SuperDave]

My guess is the new sleep doctor overlooked the failed effort to use the bipap during the sleep study, and plans to let the auto bipap do the titrating and make auto adjustments. My problem now is I am on medicare and do not want to buy a new high dollar auto bipap and in 30 days discover I really needed an ASV. For now I am not using any machine (no point chasing the apneas with he old ResMed S8.) Looking to rent or buy for cash an affordable used S9 Autoset to use for a month or so, to create some useful sleepy head charts. Then I will be able to make a more informed decision about which machine to buy under my medicare coverage.

[Pugsy]

You need a machine that can tell the difference between central apneas and obstructive apneas and the S8 AutoSet you have can't do it.
If the bulk of your apneas shown are central in nature then it's no surprise that more pressure isn't taking care of them and in fact might be making them worse.

A regular bilevel machine...might get the job done but I seriously doubt it.
I think you may need a special kind of bilevel machine.

Watch this video....while I can't be certain that this is what is going on in your situation...it's highly suspicious.
https://www.youtube.com/watch?v=CU-XTcf ... e=youtu.be

First thing though would be to figure out what kind of apneas you are having....obstructive or central.
Do you happen to know anyone who has a machine newer than the S8 model? Newer machines have the ability to distinguish centrals from obstructives.
From your sleep study...looks like cpap pressure made the centrals worse.

Contact forum member LSAT....he usually has a gently used full data machine for sale...buy it...use it and then if you find you need ASV turn around and sell it back to someone on the forum.

[SuperDave]

thanks Pugsy.