The CPAP Saga.

Although I now seem to have the pernicious anemia part of my spectrum of autoimmune disease under control, and various diagnostic tests in the middle of last year found no new tumors of detectable size, my accumulation of health challenges has not slowed down. Now, it’s a diagnosis of Obstructive Sleep Apnea (OSA).

In my case, OSA may be due to a combination of the system-wide effects of Hashimoto’s thyroiditis, pernicious anemia, and cancer surgery. To make a long story short, adding together the metabolic problems of hypothyroidism, damage to the heart and other organs from poor oxygenation caused by years of living with defective red blood cells, and the fluid buildup in my head, neck, arm, chest and back because of inadequate lymphatic drainage due to loss of many lymph nodes, have all contributed to conditions that make it hard to breathe during sleep.

There’s no cure for OSA, although perhaps massive fat loss would help compensate a little for the pressure caused by the lymphedema. Management of OSA entails helping breathing by means of a mask that’s attached to a machine which forces air through occluded airways. This treatment is called Continuous Positive Airway Pressure (CPAP).

Insurance finally approved my use of CPAP treatment, and the other day I received my equipment. Even before I left the medical equipment provider’s office, I knew I was going to have some trouble with it: I react sensitively to hydrocarbon fumes, and the new machine and its attachments are made of plastics that are outgassing horribly.

Almost looks like an innocent bedside clock-radio, doesn’t it?

I began by soaking the stinky tubing with vinegar water, hoping the mild acidity would loosen any surface residues, and intending to follow up with baking soda, to neutralize it. After about a 20-minute soak and a fresh water rinse, the tube had lost all odor, including that of vinegar, so I saved trying the baking soda for another day; however, what I couldn’t do anything about was the plastic stench that emanated from the unit itself. It would gag a maggot.

It took me more than half the night to fight the setup into submission, so any benefit that may have accrued from initial implementation was lost. I had known that the mask fitting and the device setup as performed in the DME store would be useless: how a mask fits when a face is upright in no way reflects how it will fit when that face is horizontal; and I suspected that the settings the respiratory therapist was programming into the machine would not work for me (tube heat too high, humidity too low, and that the automatic air pressure ramp-up would probably be inappropriate). What I didn’t know was just how awful the effects would be, until the machine was in operation.

Eventually I figured out that I needed to resume using a pillow the regular way (I was used to folding it into a neck roll, or substituting one of my two styles of neck roll), in order to help support the mask in a position to achieve a seal. My preferred pillows are flat, but a bit of applied bunchiness sufficed. Unfortunately, I have less bone and more cartilage in the bridge of my nose than most people do, so the pressure of the top end of the mask tended to occlude the airway. Not a good situation for a treatment that’s supposed to alleviate Obstructive Sleep Apnea.

Now, doesn’t she look peaceful and comfy?

The tube heat, humidity level, and the force of the blower at ramp-up were harder nuts to crack. Within a short time, my mouth was horribly dry and my nasal passages were both dry and stuffy; and the auto-ramp-up, which is set to start when it detects that you’re falling asleep, was waking me up at that point, just as bad as the snoring would do. Even worse, actually, because I’d wake up in a gale-force wind that howled out of the mask ports, vibrated my face as the air escaped the silicone cushion, and deformed my mouth into a Wallace & Gromit leer.

I disabled the auto-ramp-up (which meant that the air pressure increase would then begin after 45 minutes, giving me a chance to at least snatch a short nap), increased the humidity to the maximum available (#8), and throttled down the tube heater to 68 degrees (the RT had set it at 81). Sometime after 4 am I finally got to sleep, and woke up at 7:45 to a hurricane in the mask (because the high humidity was condensing at the low tube temperature) and another case of Wallace & Gromit face. I backed off the humidity to 6, but because I’ve always found it easier to breathe perceptibly cool air, I’m not enthused about trying an increase in tube temp (although perhaps I could tolerate it as high as 70 degrees).

An attempt to take a late-morning nap with the latest settings resulted in a brief period of unconsciousness (interrupted by another wind storm), and only another hour registered on the usage display (I racked up a total of 8 hours 31 minutes). But at least I’d exceeded the minimum use time mandate for the first 24 hours of insurance coverage, so I washed the mask, hung up the tubing, and got on with my life.


I can't even read my own mind, sometimes, so please leave a reply! Thanks!

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