Hello Guest, Welcome to Apnea Board !
As a guest, you are limited to certain areas of the board and there are some features you can't use.
To post a message, you must create a free account using a valid email address.

or Create an Account

New Posts   Today's Posts

n0doubt's therapy thread / rants from a 'particular individual'
n0doubt's therapy thread / rants from a 'particular individual'
I'm gonna p*** off my doctor... for sure my DME provider. I do not wish to do this intentionally as they are generally here to help, but it's going to happen.

Background on me: I am a telecommunications engineer in my late 20's, as well as a self-defined "technologist" and tinkerer. When I was younger, I would often quip "They can claim they can do all things through Jesus, just give me a computer and I gotchu." Well, nothing has changed, except my skillz became more "1337" as time has passed (and I have a HAM radio license and a real job now). I don't want to gloat or give off the wrong vibe to you as you read this, but to put things into perspective I am more than capable of (eventually, and with lots of time and effort) figuring out how to accomplish anything involving technology, software, or hardware (yes, I plan on eventually contributing to OSCAR or another effort at some point in the future). 

My family has a history of snoring, my father specifically snored like a chainsaw (you could hear it across the house) and thanks to a change in some rules surrounding something he did (intentional vagueness here), he was finally able to feel comfortable enough to approach his doctor and was pretty immediately diagnosed with OSA. 

My condition was first noticed by my wonderful and supportive s/o, she was regularly concerned as I would choke, gasp, and stop breathing nightly. This prompted me to approach my GP and get a referral to a sleep specialist. A take-home test revealed 6 "events" and a year and a half later (due COVID stuff and other financially related woes) in September of this year, I completed my first sleep study. 

The study went about as poorly as a sleep study could go, I must've slept like crap the night prior as I could not stay awake and took a 3 hour nap the day prior. To keep awake to make it to the study, I had two cans of Coca-Cola (a below-average amount for me, yeah yeah I know, its bad).  Once I was wired up and went to bed, I had the hardest time sleeping I've ever had ever in my entire damned life. It wasn't the wires or the room, but it was the nose vibration sensor up my nose that caused me to be incredibly uncomfortable and outright unable to fall asleep. I am still in the process of acquiring the raw sleep study data (and the video, that'll be fun to watch), but I only slept about a total of 3 hours the first evening. 

Despite only 3 hours of data gathering, that evening I (thankfully) experienced enough symptoms to qualify under my in$urance. The lab notes from the first study read as follows: 
Quote:In lab sleep study on 9/28/2022 showed mild mixed sleep apnea.  RDI was 26.8 and AHI was 6.5.  He had a fair number of central apneas seen during the study, some of which were incorrectly scored as obstructive apneas (14 central apneas, 5 obstructive apneas, and 5 hypopneas).  Oxygen saturations are normal all night with a low of 90%

I was actually shocked at how many events I had in only a ~3-hour window, especially with the RDI being at 26.8. I believe my AHI was so low due to the central apneas being more prevalent. It should be noted that I had the supervising technician for the sleep center as my PSG tech and I assessed him to be above average in the performance of his duties and trust the manual corrections he made to what I understand to be the ResScan data of my study.  

After consultation with my sleep specialist, I was scheduled for my titration study.

This is where I start to get angry so bear with me here....

The lab claimed to me they could not accommodate me until December 11th, which was on October ~15th. As the second titration PSG was so late in the year, I am unable to get my hands on a machine until January. The way my health insurance works (my employer is actually kind of awesome and our insurance is literally the best HDLP money can buy from Cigna, I've checked), I met my deductible for 2022 and would've paid nothing for the machine if I got it in 2022. Since I now have to get it in 2023, I have to put it on a whole new deductible and owe some a$$4013 DME company my entire deductible. 

When I went in for my titration study, I asked about how busy the center was in the past few months. I was met with a response I did not expect: "Oh we had several open slots in early November, I'm not sure why you were not scheduled." 
Thankfully my s/o has been nothing but supportive and encouraging and has made it clear it is okay if I get a cheap one, but this monstrous ****up has cost her a nice engagement ring Sad

Anyways.... the results of the titration were as follows:
Quote:His best pressure was found on CPAP 10cm.
When he was put on BiPAP he had notably worse central events. He was put on ASV at the end of the night and best treated on ASV with EEP 5 cm H2O, PS min 3 cm H2O, and PS max 15 cm H2O.

I would like to take a moment to admire the miracle of modern medicine, I had the best sleep of my life that evening. I expressed this perhaps a bit too enthusiastically to the PSG technician as I was incredibly excited that I could wake up free of a headache and spins (things I had before thought were normal to sleeping). 

It was noted elsewhere in the study that: 
Quote:He did have some central apneas that occurred on CPAP

This fact qualifies me as having complex sleep apnea disorder. I don't care what else anyone has to say about the potential of a plain 'ol CPAP working, I had air forced down my face and still stopped breathing. This apparently did not happen with ASV. 

After some follow-up discussions with the nurse at the specialist's office, it was made clear to me that the initial decision of recommending me a CPAP over ASV was influenced by my insurance and not medical science. After doing further research on my own, I managed to get the recommendation changed to an ASV machine. I can only hope and pray the insurance figures it out and just accepts my claim. I have some tricks up my sleeve that I won't share here, but gosh darn it I WILL LEGALLY GET MY ASV MACHINE COME HELL OR HIGH WATER. 

Note here that my specialist specifically said I was "best treated" on ASV (this was before I talked to them about their initial CPAP recommendation). My insurance can >self-censored self-censored self-censored self-censored< itself if they think it's not "medically necessary". Only my doctor can say what is medically necessary, and the King of Insurance (ref Drawn Together, I can't post a link to the picture that explains this joke) can take advice from the lyrics of "Oh My Darling Don't Cry" by Run the Jewels. 

If this DME claim gets denied as not medically necessary, I'm literally taking this up with my congressional representative to be used as an example of how messed up insurance in the USA is. I know I'd have caused some of my own problems here, but all of the research I have done has pointed me to an ASV machine over a CPAP. 
Anyways, my logic behind working with my provider and going straight to ASV is two-fold: 
1. I will be saving the insurance company money at the end of the day.  I did some research on this forum and found some hard facts that said CPAP only has about a 50% success rate for complex sleep apnea disorder. Between this, and me knowing myself, if I started with just CPAP I would have a 50/50 shot of eventually needing an ASV machine anyways
2. I'll be more compliant with the therapy: I determined that the technology behind the ASV machines was far more sophisticated than a CPAP and I found the experience on ASV far more pleasurable than when I fell asleep with the straight CPAP (I started on CPAP, then they tried bipap which woke me up, then I felt them switch to what I now know as ASV and I went back to sleep, all of this pending confirmation when I receive the data from the study). 

After talking with a DME company, I was able to further determine that my specialist prescribing an ASV first, it forces them to give me an AirCurve 10 and not a stupid brick. Hopefully, I get my machine in mid-January. The guy at the DME provider was kind of a high-key jerk but he became more sympathetic when I explained how I had to wait so long for titrations (I did NOT mention the ring). I think he was surprised there was no yelling (it must happen a lot). 

Dealing with the insurance compliance period is going to be outright hilarious. See above where I am an engineer, technologist, tinkerer, and oh yeah a HAM radio enthusiast. Due to the nature of my employment, I am also highly security conscious (my posting here being a transgression of my usual security practices). In October when I got the diagnosis, I shared these concerns with my specialist, and she informed me we could disable the modem and get data to her with SD cards. If I correctly put my words in order, she hopefully picked up that I would be inside the provider menus pretty much instantly when I get my dirty stinking hands on the machine. 

In case this all fails, I have a design for a Faraday Cage standing by to be built. I am also more than capable of doing some less scrupulous things to prevent a cellular or wifi connection to the device. At present, I plan to do nightly or weekly exports into OSCAR or ResScan from the SD card and then manually share printed exports with whoever needs to assess compliance. Long term I plan to work to automate this process and provide myself with a system of quickly alerting me of a poor night's sleep. As a backup, during the compliance period, I will log my usage with pen and paper, then provide a notarized affidavit to whoever may give a hoot about compliance.

All in all, my actions will probably, no, definitely, cause me more problems than what most people would say is worth it, but I don't care. I'm the patient, I'm in control here. If I'm going to hook my lungs up to a machine every night, it's going to be done my way and on my terms, and with me sticking my greasy fingers in all of the inner workings so I can make sure it's done right. Furthermore, I have a life partner who will set me straight if I'm about to go too far and who will support me to the ends of the earth, and who listens to and understands my sometimes overly paranoid concerns and figures out how to get me to make the best of them. 

I welcome any and all input especially for handling compliance monitoring, but I am rather stubborn so please do not be put off if I seem questioning or unwilling to take advice, it's how I get to the bottom of things and make the best assessment for me. 

Post Reply Post Reply

Donate to Apnea Board  
RE: n0doubt's therapy thread / rants from a 'particular individual'
I love it. Well done!!!!

Stick around, we have a number of ASV users here.

When you are ready to contribute to OSCAR let me know.
Post Reply Post Reply

Possibly Related Threads...
Thread Author Replies Views Last Post
  HalfStep - Therapy Thread HalfStep 12 163 3 hours ago
Last Post: Crimson Nape
  Sorry to start new thread but need nap Morgannon 148 4,111 Yesterday, 07:52 PM
Last Post: Sleeprider
  SleepyCPAP’s Treatment Thread - Palatal Prolapse AlaxoStent SleepyCPAP 99 7,376 Yesterday, 04:37 PM
Last Post: AndyB
  Starting ASV therapy - 1st night results and questions 00derek 9 281 Yesterday, 11:37 AM
Last Post: Sleeprider
Exclaimation [News] RECALL THREAD-- IMPORTANT PHILIPS DREAMSTATION & SYSTEM ONE USERS Sleeprider 2,661 280,451 06-03-2023, 08:29 PM
Last Post: WakeUpTime
  Crickets Therapy Thread Crickets 10 300 06-03-2023, 04:48 PM
Last Post: Crimson Nape
  Oscar analysis - Excessive sleepiness after successful therapy jesslarsen21 3 139 06-03-2023, 10:14 AM
Last Post: gainerfull

New Posts   Today's Posts

About Apnea Board

Apnea Board is an educational web site designed to empower Sleep Apnea patients.