February 20, 2010: No CPAP, No Sleep

We arrived in Houston around one in the morning this morning after our long drive down from Las Colinas.  We were about an hour away from the Grices’ when it occurred to us that we had forgotten to pack my CPAP.  Well this is a major catastrophe.

I absolutely need a CPAP in order to sleep.  It is actually quite dangerous for me to attempt to sleep without my CPAP as I could very easily stop breathing during the night.  So I had to stay up all night working in the hopes that Dominica would be able to go out and find a CPAP in the morning in the Houston area.  If we fail to do so she will need to drive us back to Las Colinas pretty much first thing in the morning.

To make the day even more challenging I have Linux server patching to do that fortunately I can do just about any time so I started doing around two thirty in the morning, I have seven o’clock deployments to be done and I have my final paper for my master’s class at RIT that is due to be handed in today.  So all of that has to be done while I get no sleep and possibly drive back to Las Colinas which takes about five hours.  One way or another it is going to be a pretty long, crappy, exhausting day.

Dominica stayed up late doing research on where to buy a CPAP in the Houston area.  Our plan is for me to stay up all night and to do as much work as possible to get it out of the way in the hopes that I will get to go to bed later on in the day.  Then, first thing in the morning, Dominica is going to get up and attempt to track down a place that will sell us a travel CPAP.  If we can get that we will run out and buy that right away and then I will get to go to bed in the middle of the day.  If we are unable to find one then we have to turn around and drive back home straight away in the morning so that I can get back to my CPAP in Las Colinas.

The night actually went by pretty quickly for me.  It was probably two in the morning when Dominica and Liesl finally got off to bed.  I set straight off to work doing my Linux server patching that had to be done today and then to work on my final paper for my Clinical Information Systems class at RIT which is due today.  That took all night and I was just wrapping up around six thirty this morning when I got paged out to go deal with a server.

I managed to get a jump start on my morning deployments as well.  It was a very productive evening and a great use of the time.  Today was going to be a really tough day but I managed to eliminate all of that extra work that I would have had to have done all throughout the day by a little after seven in the morning.  There was a lot of other work that I would have liked to have gotten done but I was so delirious by the time that I was done with what was mentioned that I could not possibly have done anything further.

I got most of my work done by eight when Dominica got up.  I was pretty much delirious already from a lack of sleep.  Dominica started calling around to places like CPAP.com to see what they could do to get me a CPAP but no luck.  So we had to wait until the next places opened up around nine.

What we learned at nine is that the state of Texas has, in their infinite wisdom and disregard for the safety of their citizens, classified a CPAP (a simple air compressor) and the plastic tubing used as a facemask as controlled pharmaceutical devices!  Talk about a state being bought out by the medical industry!  So now to get this absolutely necessary medical equipment one must get a prescription.  But, of course, prescriptions normally would come from a specialist as normal doctors are not equipped to know how to diagnose and recommend such things.

The problem with the CPAP is that it is absolutely necessary equipment for people like me who have central sleep apnea that can be triggered by traditional sleep apnea (bi-direction, in my case, meaning that my throat closes off as I inhale and exhale.)  Central sleep apnea means that if I stop breathing naturally that even if I can catch my breath that my brain is likely to just stop trying to breath and I will suffocate.  So having the CPAP is completely necessary to keep me alive.  I have not slept without it in over five years and if I don’t have it I do not dare fall asleep.

If we were in NY we would have just run to the store and picked one up.  But in Texas we had to run to urgent care, wait for a few hours, and finally get a prescription.  Of course the script was just the doctor writing up whatever I told them to write up so the Texan claim that this is done for “my safety” is obviously a lie since you can’t get a meaningful script for a CPAP in an emergency.  All the Texan law does is cost me an extra $105 and several hours and put me at extreme risk.

So we got the script and called the only CPAP dealer in the entire Houston metro that we could find that was both open today and had anything in stock.  We had them stay open late as it was an emergency and we drove for an hour and a half to get from urgent care to the CPAP dealer where we had to spend double the normal prices to get a CPAP.  Texas has really worked out how to milk this process!

It took another few hours to get the CPAP after we got completely lost trying to find the only dealer that was open.  The CPAP that we ended up getting, for $650 instead of $235 online, is pretty nice and a massive improvement over my old one.  The new facemask is quite a bit nicer too.

So, after fourteen straight hours of trying to deal with getting me a CPAP and some way to sleep we finally had a solution.  We headed back to the house and grabbed Jack in the Box on the way because I had not eaten in almost twenty four hours.  JitB does breakfast all day long which is really cool.  I have never eaten at JitB before.

The number of things wrong with how Texas deals with CPAPs is really astounding.  The level of risk that they put people at is insane.  It is only because we are relatively affluent, have a large amount of information about my CPAP (I knew the prescription details that were necessary, for example,) that it happened on a Saturday and not a Sunday and I had a spouse who was able to drive me everywhere that I needed that I was able to get a CPAP at all.  Any one of those factors being different and we would have been in an unsolvable situation.

Houston is the sixth largest metro area in the United States and for a city of this size to not have a way for a very common medical emergency to be fixed on a weekend is unthinkable.  Even as it was by the time that I needed to go see a doctor I was far too tired to drive safely.  One of the problems with CPAP emergencies is that the person being affected by it is not in pain but becomes rapidly unable to make decisions, drive, maintain their sanity, etc.  Once I can’t get to a CPAP a clock starts ticking and after roughly forty-eight hours I simply become too tired to keep myself awake any longer and I die.  Texas seems to think that doing this to me is more important than letting small air compressors fall into the wrong hands.  They claim that the law is there because some people would buy CPAPs and kill themselves by setting them up wrong.  So instead they decide to put my life and many other innocent peoples’ lives at risk rather than letting someone hurt themselves with it.  Thanks Texas.  I see where your priorities are.

The person getting a CPAP in front of me at the dealer said that they had almost died that day trying to drive around to get the CPAP since they were so tired that they couldn’t drive and didn’t have someone to drive them like I did.  So Texas is putting other drivers’ lives at risk too as CPAP owners desperately try to get a way to keep themselves alive.  Of course, deaths caused by sleep apnea and driving deaths caused by the Texan government putting CPAP owners at risk don’t show up statistically in that way.  So they conveniently put those of us at very high risk who don’t statistically show up as being “their fault” while letting an extremely tiny minority of people who do show up in the statistics as hurting themselves with a CPAP that they obtain in other ways other than through appropriate channels.

To add insult to injury Texas claims that they must protect CPAP owners from themselves so it is illegal for CPAP owners to be told how to operate the CPAPs that they have to pay a fortune to buy.  The whole law is there to keep us from hurting ourselves because only trained professionals are supposed to set up a CPAP for you.  Of course, when I got my first CPAP, the company that sold it to me wanted to make more money so they got the insurance company to pay for a C-FLEX over a standard CPAP which costs more.  They then set it up as a C-FLEX rather than in CPAP mode, even though the original prescription was clear on it being a CPAP, and I almost suffocated because the machine closed off my throat and I didn’t get any air.  So, in my case, the law in Texas not only puts me at the insanely obvious risk that they did today but also puts me, and thousands of other apnea sufferers, of a technician setting up the CPAP incorrectly.  So as unlikely as both scenarios sound, both have now happened to me in the course of my five years with my CPAP and they have only happened just twice because I learned how to set up the original CPAP myself and made sure that it was correct after that.

I was unable to go straight to bed when we got back as my final for RIT was due today and Dominica had not had a chance to proof read it yet since we had this emergency going on.  So she read it through and I made the necessary corrections and got it submitted.  I am all done with that class now.

So I went to bed around five and slept for several hours.  Oreo snuggled with me.  I slept pretty much solidly until around ten or eleven o’clock.  Then I got up for about two hours and watched Starstruck with Dominica – a Disney Channel original movie.  Then it was back to bed for me.

In the morning Brian is flying into Houston’s Hobby Airport on Southwest around eleven in the morning so I am driving up there to pick him up.  I need to be up working before that.

The new CPAP works well and I like it a lot better than my old one.  This one is going to live in the car.  One for the house and one for travel.  Much safer that way.  The risk of not having one available and working at all times is just way too great and far greater than we had realized.  We had never heard of not being able to just buy one before.  My dealer in NY had even offered to just overnight the CPAP that I needed to me but that would not have arrived until Monday and that would have been too late.

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  1. I completely agree. I was just feeling bad for Texas.

    The FDA pushes the line on placing CPAP machines in the same category as a “noncontinuous” ventilator since it “assist a patient’s breathing”.

    However, in order to set the correct pressure the physician has to test and write the order.

    The DME Provider should of been able to get the prescription directly from your prescribing doctor back in New York instead of making you go to urgent care.

    Hope you keep a copy of the prescription in the event another DME is unwilling to contact your doctor and make you go through all the troubles.

  2. I was wondering, too, if there was something I missed about needing a prescription for a CPAP in New York State. I use one and I needed a prescription. Glad that’s clarified…

  3. I talked to a major supplier in NY and they told me that no prescription was needed and that they could overnight a CPAP to me without one, even in Texas. Perhaps this is not true but the dealer said, and rightfully so, that the idea that you would need a prescription for an air compressor and plastic tubing was ridiculous.

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