So, yeah, today was my follow up appointment with the sleep specialist, as well as the day I got fitted for and took home my CPAP machine. I was really looking forward to this, as well as being more than a little nervous. After all, the last time I went through this testing, I was fully expecting a diagnosis and treatment plan, and all I got was a doctor telling me "You're perfectly normal. Just get better sleep." Not to mention that I've been doing way too much surfing on the internet, reading horror stories about all the patients who took months to adjust to their CPAP machines, or never did acclimate, and just stopped using them and tolerating the symptoms, or of people who were 100% compliant with CPAP therapy and still got no, or very little relief.
Remember me? The one who immediately imagines everything that could possibly go wrong in any given situation, and then automatically assumes that the worst will happen? Yep ... I am ...
But perhaps I'm getting ahead of myself ...
I suppose I'll start with the good news. The doctor did not, as I partially feared, recant the initial diagnosis and tell me I was just fine. I do, in fact, have sleep apnea.
However, the test results were not at all what I was expecting. According to the test results, my apnea is actually considered "mild". My AHI (apnea hypopnea index - the number of times per hour one either stops breathing or breathing is diminished significantly enough to interrupt sleep) is only an 8. Most of which are hypopnea (reduced breathing) events, and not actual apnea. Any score over 5 is considered positive for sleep apnea. Anything between 5 and 20 is considered "mild". 20-40 is "moderate" and over 40 is "severe". And my score is a piddly little 8.
WTF?
I had to ask the doctor about that. Why was I feeling so lousy, and my life completely turned upside down by not being able to get a decent night's sleep no matter what I did with such a mild case of sleep apnea? Why was I completely unable to function and showing all the signs and symptoms of chronic and excessive sleep deprivation? What the hell is the matter with me? Is there something else that is really wrong and causing all these symptoms? Is the CPAP even going to do anything for me? How long before I know anything?
Apparently, I'm not the only patient he's had who has experienced this kind of result. He told me that first off, my body reactions to even mild sleep apnea is not all that uncommon, and he has seen similar, and sometimes even more extreme, symptoms in other patients with a similar score. I hope he wasn't saying that just to humor me. He also said that the home sleep studies often give off false negatives and artificially low API scores, and he doesn't like to recommend them unless the insurance company insists on doing a home study first. Okay, I'm a little more pacified by that response. Especially since, really, the end result would be the same in terms of diagnosis and treatment.
I also did something I am extremely reluctant to do. I asked for a medical release note so that I would not have to do any business travel for the next few weeks as I adjusted to the CPAP and attempted to make up for some of the sleep deprivation. You see, yesterday, I got an invite to an on-site meeting in Minneapolis that is happening in a week and a half. And I panicked, thinking there was no way I was going to be able to handle that so soon into my treatment, and had terrifying flashbacks to the meeting I attended in February when I had the full-on anxiety attack and broke into hives. (By the way, as it turned out, I was sent the invite in error.) So I asked, and he agreed that was a totally reasonable request to not have to subject myself to jet lag on top of the rest of my sleep issues. I am hoping I don't have to use it, and that I will be once again well rested and back to my able self in time for the meeting in Florida I need to attend in May.
After I left the doctor, I met with the DME specialist to get my CPAP and get fitted for a mask. She was very nice, and showed me how to work it and how to clean it, and everything I need to do to stay compliant with my treatment plan so that my insurance plan will pay for everything. That one kind of surprised me, all the ways she showed me that the machine would know when I was trying to fool it into thinking it was being used (e.g. blowing air without putting on the mask). I don't understand why someone would do that. Seriously, this makes no sense to me. If you have a condition that is keeping you from getting sleep, and making you feel so wretched, why would anyone want to pretend to be compliant with a treatment plan? Still scratching my head on that one.
Then we got to the mask fittings. Her recommendation was to try the least "invasive" mask style first, which was the nasal pillows. I did let her know that I tend to breathe out of my mouth, especially when sleeping, knowing that might make a difference in the type of mask given. She showed me the full face mask (the "Vader", as many of my friends call it). I really didn't like that at all. She still wanted to recommend a nose-only mask, with a chin strap to keep my mouth shut. This seemed like a better option to me. So I tried the nasal pillows and the full nose mask, both in the "ramp up" pressure of 4 and the full starting pressure of 8. For those who know what the heck that means (fellow CPAPians), mine is an a variable device, adjusting itself based on need between 8 and 12. It all felt strange. The full nasal mask was very uncomfortable and even after just a few minutes was starting to irritate my skin. That decided me on the nasal pillows. I didn't even want to try the full "Vader" mask if the nose mask was that bad.
So, yeah, nasal pillows, size small (my little nose with it's tiny nostrils), with a lovely lavender head guard. And a white flexible chin strap to keep my mouth closed. Oooooh! Sexy!!
Yep, that's what I'll be looking like when I sleep from now on. I'll bet Brian has a hard time keeping his hands off me ...
You know, I just realized, that is one question I never asked. The DME tech told me I should disconnect the hose if I needed to get up to use the restroom, but leave the headgear on. I didn't ask about what to do in the case I decided to engage in "other" semi-nocturnal activities. Hmmm ... I can't be the first person who ever wondered about that.
In any case, I did ask a lot of questions about travel, and camping, and whether I could use this device or if I would want to buy a "travel CPAP". Both the tech and the doctor advised against the inexpensive travel versions. Their recommendation was to get a long term rechargeable battery for this one (not covered by insurance, but I don't care), and take it with me on any trips. I could leave the humidifier component if I wanted to, since that is for comfort only, and doesn't affect the actual air pressure. Oh, and my TSA learning experience for today? My CPAP doesn't count against my carry on luggage, since it is medical equipment. Kind of cool.
So, tonight is my first night sleeping with the CPAP. I'm both excited and scared (yes, "I Know Things Now" from Into The Woods is going through my head now too ...) and hoping for the best.
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