If We Told You That, We Would Have to Shoot You

What product can you buy that is expensive, works with your PC, does things that could be critical to your health, but the salesman can’t tell you how to use it?

Sounds stupid, huh?    

A lot of medical products, that’s what.

I found this out during a long and painful experience with Obstructive Sleep Apnea.

I can’t breathe at night — it’s not being fat, although I am, it’s that for some reason the muscle tone in my neck sucks. So as soon as I drop off to sleep, my throat closes up and I stop breathing. As my blood oxygen levels drop, adrenalin kicks in, I wake up a little bit, my throat opens up, and then I immediately pass out again.

Most people have some form of obstruction when sleeping. However when it reaches over 120 times per hour, you’re basically waking up twice a minute. That means no REM, tossing and turning all night, your adrenalin and stress hormones are in high gear, your heart rate is surging all night long, your blood pressure is out of whack — as you can imagine, not a good thing. If left untreated, OSA at that level can lead to heart attack and stroke. Early in life.

So I went to the doc and told him my problem. Told him I needed a CPAP. (Continuous Positive Airway Pressure — a device that does not breathe for you, but keeps your airway open so that you can breathe) My wife and I have been observing the symptoms for years, we’re done the research, and now it is time for action. He said I needed to go to a pulmonary specialists first — a guy who specializes in lungs and hearts. Why? Because it had to do with breathing. Could I have just went to the pulmonary guy first? No, they won’t take you without a referral.

I go to the pulmonary guy. Tell him I have this problem, have had it for years, it’s gotten bad enough that I am unable to get enough sleep at night and my health is going down the toilet. I need a CPAP. Pronto.

Do I get a CPAP? Nope. I get a “sleep study”

Sleep studies cost $2000 and they are very important to make sure that you really have the problem that you say you do. Or at least that’s what they told me. They measure your breathing, pulse, movements, and blood oxygen through the night. They also can fit you for a mask to use with your CPAP and show you how to use one. You’d think sticking a mask on your face would be fairly simple to learn, but it’s good to have support.

I show up, tell them my problem, and say “So, once you measure this, do you start fitting me for a mask?”

Nope. We send you back to the pulmonary guy. We just take measurements. Another guy comes in during the day and reviews the data. Then we send the data to your pulmonary guy and he makes a decision.

Gee, I thought I had already made the decision.

Did the sleep study. Went back to the pulmonary guy.

Can I get my CPAP now?

Nope. He tells me yes, it looks like you have Obstructive Sleep Apnea (which was very much a “no shit?” kind of moment for me) Now you must have a CPAP.

Yay! Cool! Got one here? It’s been 4 weeks since I started this and I’m feeling the worst I ever have in my entire life. I will go to another hundred tests and doctors, just please give me a CPAP so I can breathe tonight.

Nope. Dude, you got to go back for another sleep study. We just make the diagnosis here, the sleep study guys are responsible for fitting and making sure it’s working okay. They make sure the diagnosis is correct. Maybe it was my imagination, but somewhere far away I could hear cash registers ringing.

Back to the sleep study, where another $2K later I have a temporary mask and my first real night’s sleep in months or years. But no CPAP. Where’s the CPAP? Hell, you got to go to the medical supply place for that. We don’t sell CPAPs. What do you think we are, a home medical device provider?

Off I trot to the medical supply place.

By this point I’m starting to get a little concerned. Even though I am currently under insurance, for most of my life I have been self-pay. And I need this CPAP thing. It’s not like a new hat. It’s not even like a car, or a house. I need this CPAP thing like I need air. So what happens if I have no insurance and the one I have breaks? What if the power goes out? What if it stops working well? What if my condition changes? It’s not like I can play pin-the-tail-on-the-billing-chain every time something needs tweaking. After all, this is my breathing we’re talking about. I am very fond of breathing.

So I call the doc and make sure that it’s an APAP — Automatic Positive Airway Pressure device. Through my research I found out that the automatic ones will adjust themselves during the night. That means less fooling around with doctors.

At the medical supply place, I finally get an APAP. But it was programmed to be a CPAP. The doc wrote the prescription for an automatic machine, but that it would be set on a fixed setting.

So the automatic machine was set to run in non-automatic mode. Why? As best as I can tell, for safety. We can’t have folks running these machines just any way they want. If it needs adjusting, I was told, just call us up, bring in the chip, and we’ll turn it up or down a notch or two.

But how will you know if what you are doing is correct? How will I know when to bring it in? Hey if you start having a lot of problems, let us know and we can reschedule a sleep study. Find out what’s going on.

!@#$%$@#

I have reached the end of my patience. The medical system is a system between providers — doctors, test takers, diagnosticians, pharmacies, and such — and payers — insurance companies and government programs and such. Nowhere in that equation was the patient, although everybody was supposed to be in it for him. Nobody had any malice, everybody was acting as carefully and precisely as they could and they all had my best interests at heart. But somewhere along the way I stopped being helped and started being herded.

That’s not happening.





Programmer Versus The System

So I go home and find a pulse oximeter — a little device that measures my pulse and heart rate over night and then reports to me what is happening. It’s not a $2000 sleep study, but if my oxygen is fine and my heart rate isn’t spiking? For all I care things are working fine.

I have decided to go off the doc treadmill and start taking control of this thing.

The pulse oximeter shows up. Cool little gadget, a PulseOx 7500 Wrist Oximeter, plugs right into a USB port, and after some screwing around I got it to work.

But the program to access the data is proprietary. The data is proprietary. Hell, the USB drivers are proprietary. The company that makes the device doesn’t support the software and the guys who made the software are long gone (both of these thing probably happened for liability reasons). So could I have the spec? I’ll write my own program to pull the data? Nope. The spec does not exist on the net. Aside from using the software they provide to read and display the data, I have no options. Can I correlate it into larger groups? Perform my own statistical analysis? Export to a standard format? Nope, nope, nope,

Ok, how about re-programming the CPAP to go into full auto mode? After hours of googling, I can’t find a way to do that either. For a machine with a data card, a processor, and all these smarts it doesn’t seem to want to talk to other machines.

I even found out that my machine was monitoring my breathing habits during the night — it could tell me of obstructions. Between that and the PulseOx I had a pretty damned good set of instrumentation, but the machine couldn’t tell me what it knew. That was for the doctors. Not the user.

“If you have any problems or would like us to look at the data, just bring in the card and we’ll take a look” the nurse helpfully told me on the phone.

So I started calling people who sold CPAPs on the net. Spoke to one guy last week. If I bought a new machine, paid for it with my own money, do I get the technical guide along with the user’s guide? Maybe a link to a SDK somewhere?

“I can’t tell you how to configure your machine or how to get data from it,” the guy told me, “the FDA strictly forbids me from telling you the details of how to operate the machine except as a user”

How about not setting the machine, but just getting the diagnostic information it contains? Nope.

I can be a user, but I can’t be an informed user. If I want information, I must go to the magic people who charge me (or somebody else) money. After all, what would silly old me know about reading such complex information? It would do nothing but confuse me.

Now I’m not shooting up morphine — I’m basically using a machine that maintains pressure in my throat while I sleep. Best I can tell, there is nothing addictive or harmful about this situation — especially compared with strangling myself while I sleep each night. But the machine vendors have a deal with the docs and the techs and the specialists and the rest of the system where everything is a walled garden and I’m not invited in. I’m just the owner, the user, the human being.

If this situation existed anywhere else where we paid tens of thousands of dollars, people would be outraged. But it’s all hidden here, except for those who are stuck on their own. Worse, the system is rigged so that open and shared information is harmful to those who provide it, so the incentives are all for controlling more and more information and charging for access (usually in the name of safety or risk or whatever). And so it will simply get more complex and difficult to access.

Meanwhile I’ve got a cool machine that could help me understand my condition, and I can’t do anything but plug it up and turn it on.

“I could tell you how to program it, ” the salesman said last week, “but then I’d have to shoot you”

He laughed.

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19 thoughts on “If We Told You That, We Would Have to Shoot You

  1. El-ad

    You completely forgot one important angle: Lawsuits. If they give you the specs you need and something goes wrong, they might be liable. The doctors, the pharmacies, the equipment vendors, everyone involved, must cover their behinds.
    On the other hand, can you order the machine from abroad? Maybe a foreign vendor can supply you with the information you need.

    Reply
  2. DanielBMarkham

    That’s a great idea, thanks! I might try that
    Of course, as a hacker it’s not like I couldn’t figure all this out — drop into debugger mode, start decompiling dlls, etc. It’s just not supposed to be this complicated.

    Reply
  3. Noel

    Here’s to hoping you plug-in and attach to a process and start getting an API together for yourself. I’d be quite interested to see how it works out and what you come out with!
    Good article – I’ve never been here before, but I’ll keep reading after this one!
    Hello from Reddit, btw! ;)

    Reply
  4. Jeff Thompson

    I wholeheartedly agree with you assessment on this being a racket.
    I have a similar experience except mine ends prior to getting the sleep study.
    I am self employed and the insurance I had at the time my problem was getting bad would not pay for a sleep study.
    My grandfather, father and brother all had/have obstructive sleep apnea. I’m pretty sure my diagnosis was a slam dunk. But not without the $2K sleep study which I couldn’t afford.
    My dad was kind enough to give me is old machine after being eligible for an upgrade through his insurance.
    I did some research on the interwebs and came to the conclusion I would try it. It was already set on the lowest setting (4 cm/H20), so I wouldn’t even need to tweak it.
    2 plus years later and I’m sleeping like a baby.
    I even found how to change the settings via the buttons on the machine. It requires holding down a couple of the buttons while powering up the unit to put it in a programming mode. (It reminds me of resetting the oil light or key fobs on newer model cars.)
    Its a simple CPAP with settings for pressures from 4 to 20 and whether or not to ramp the pressure up over 10, 30, or 60 minutes, or some such. So not the bells and whistles of a APAP.

    Reply
  5. Um...

    I think we’re forgetting the important thing here. Did it fix your problem? Are you sleeping better? It’s fun and all to try to reverse engineer your new gadget(s), but to what end? If it works, and your condition has improved, so what if you can’t pull the thing apart and get lots of cool data out of it.
    I don’t know how my keyboard works, I don’t want it to program, I just want little letters to show up on the screen…

    Reply
  6. DanielBMarkham

    To answer your question, now that I have the pulse oximeter, I am able to tell whether or not I am getting better. I’ve found that it’s a mixed bag — if I roll onto my back while I’m sleeping, my throat closes up and it’s not good, not good at all. But if I sleep on my sides all the time, much better.
    This means that my calibration is quite variable depending on sleeping position — very common with OSA folks. It also means I really need a full APAP instead fo an APAP set on CPAP mode. So the next step is to collect a lot of data and go back to a doc – which one? beats me — to get the machine un-bricked.
    Bottom line is that I am mostly better, but not out of the woods yet. I am probably on par with the average person who snores too much and doesn’t have treatment. But this is a big improvement! Now I just need to own my own health data and treatment to make it the last 30% or so.

    Reply
  7. max

    this. it’s fucked up for you that you knwo your condition and have to run to 1000 different doctors etc. but let me tell you i work at a hospital and most of the times the patients have no idea what they’re talking about and their self-diagnosis is unrealistic at best. the hospitals and doctors just can’t risk to be wrong and i’m from a country with much much less lawsuits then the us.

    Reply
  8. Sleepy

    You could have tried a $50 mandibular extension device (mouth guard) and saved yourself the bother. Works a treat.

    Reply
  9. Ysabel

    Generally there is a way to effectively root the machine, usually with some form of holding down buttons while turning it on. If you can’t figure out how with a little googling on your model, drop me an email with the model details and I’ll see what I can find.
    It’s much, much saner to set these things up yourself. Even if no one wants to tell you how.

    Reply
  10. Louie

    I’ve had a very similar experience. I have complex sleep apnea (Obstructive + Central), and after two of the $2000 sleep studies plus a $3000 BiPAP machine, i’ve been doing better, for the most part. The problem is that if I want to get it adjusted, I have to go back to the sleep specialist (and without insurance, that’s expensive.) My BiPAP has a data card that records all of my data, and I can apparently purchase a card reader and the software, but it’s like $250, so I haven’t gotten around to that yet (i’m a poor student atm :x )
    I’m not familiar with the APAPs, but I could imagine them being far more complex than a CPAP or BiPAP, and probably locked down in really annoying ways.

    Reply
  11. vhortex

    @Um…
    “I don’t know how my keyboard works, I don’t want it to program, I just want little letters to show up on the screen..”
    ******************
    author and me are on the same belief, if i buy something i also should get the manual.
    keyboard comparison..
    well it may be ok for you to see that there are letters showing up on the screen but i will be surely be glad if the programs on my computer can read what i am typing. as a hardware, it is possible that your keyboard was only causing the screen to show letters but when asked by programs what key was pressed.. it will hit a buzzer and stop communicating with your program.
    still it can continue showing letters but wont respond on your programs just like the problem that the author have.

    Reply
  12. Jiinxed

    At least your first doctor listened and sent you to a specialist! I had been feeling tired and in pain for SIX YEARS before my doctor (who I saw annually, and told of the symptoms each time) thought I should see a neurologist (which are apparently the doctors that diagnose fibromyalgia.) After 2 minutes in the neuro office, he had diagnosed me as having fibro. (Part of the “test” involves pressing areas of the body to see if they are painful to pressure. I pointed to various areas of my body that were painful ALL the time, and told him he couldn’t press those areas, they hurt too much. Each of those areas was one of the “accepted test points” for diagnosis! Yep, fibro.) Six years of agony and no appropriate treatments because my basic doctor didn’t think I knew my own body well enough to know that pain = problem…. Arg.

    Reply
  13. -dsr-

    I had a very different experience; I’m relating it briefly just so that you know there are other possibilities.
    My wife recorded me sleeping; that scared me enough to go to our primary care doctor. He listened and sent me for a sleep study immediately. Halfway through the sleep study, the tech woke me up, told me that he had all the evidence needed, and hooked me up to a test CPAP and got the titration settings. A week later I had a medical equipment provider’s tech sitting in my living room adjusting a mask for me.
    So all of that *can* go more smoothly than it did for you. I’m sorry that your experience was so rotten.
    Since then, my big concern has been that my insurance pays a set (large) fee to a contracted DME company, and when I need a new CPAP machine, it’s actually cheaper to buy it from a third party with a new prescription from my primary doctor than to go through insurance. ($450 vs $1400.) Insurance refuses to see the idiocy of its ways.

    Reply
  14. John

    I’m in the same position that you are. I have OSA, and am on CPAP, but I find that about once a year I start sleeping badly. So I go in for another study, and they adjust the pressure, or give me a new mask. But if I had that data myself I could be much more proactive in managing the condition. I could detect an upward trend in osa events (like you mentioned), long before I felt so bad that I wanted to go through another sleep study.
    You’re really lucky to get diagnosed with OSA, it’s such a common problem, yet so few GPs know about it, that people can go decades before it’s figured out. Most just have a heart attack or stroke.
    I’d be very interested in trying to reverse-engineer the data formats on the cards. I’m not very good with low-level data structures though.

    Reply
  15. Chris Ryland

    I had a similar problem a few years back, and just stuck a pillow in my t-shirt when sleeping (got the idea from somewhere). Problem solved, and after a year or so of that, I must have trained myself to sleep on my side, because I don’t need the pillow.

    Reply
  16. Erik

    First time reader, and it’s ridiculous on how many people you have to go through just to find out what you already know. I think it’s time we start finding a system where suing someone isn’t the first thing we look to (whole liability issue) and we start caring for our patients who really need help. We have to get referrals for no reason, why can’t the specialist diagnose us? I just hate the whole health system and I never goto a doctor unless im physically dying…im also almost 22 and have a long life ahead of me, and I don’t want to deal with this health system my whole life, and my future kids’ lives. any ideas?
    great read though, and I look forward to more. hope everything works out for you man.
    -erik
    web developer / network administrator / security enthusiast

    Reply
  17. William

    Yes, this pretty much mirrors my experience. Except the first time they said I didn’t have sleep apnea, so it was two extra years of being a zombie before I got a retest.
    For my machine I did eventually find the programming instructions by Googling, although it took me a while.
    One surprising thing for me is that weight gain can worsen sleep apnea, and sleep apnea can cause weight gain. Now that I’m sleeping reasonable hours, I no longer have insane, compulsive hunger and resultant overeating. Being well-rested also means that I can exercise regularly; to my surprise, I’ve turned into a runner.

    Reply
  18. Jim

    http://www.ventusmedical.com/
    Ventus Medical is the maker of PROVENT ® Sleep Apnea Therapy, a
    breakthrough technology designed to positively change the lives of people with
    sleep-disordered breathing. PROVENT Therapy is a new, clinically proven treatment
    option for obstructive sleep apnea.

    Reply
  19. Baby Sleeping Bag

    I have tried everything and the only thing that makes sure I get a decent night’s sleep is to really wear myself out by doing about an hour and a half of really excessive exercise in the afternoon after work. It is the only way I ever get any sleep.

    Reply

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