I was then returned to Kaiser’s ICU for a brief period – just to be sure – where Dr. Oppenheimer and I were viewed as something phenomenal for a while – first because of the obsolete iron lung and now the newfangled cuirass, neither of which had ever been seen there before. I was released to my parents’ care within the week. Not long afterwards, I returned to my own home and went back to work on an accommodative part-time schedule (whew, thanks to RAND).  

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That cuirass system, provided by Kaiser (or Rancho?) through LifeCare kept me going for the next fifteen years. It was easy to put on for napping and sleeping at home and was so effective that my 02 and CO2 levels went back to normal. Plus, with the cuirass packed in one box and the machine and hose in another, I could travel ably again around the US, Canada and Mexico. I even returned to Mexico City numerous times (where airport customs agents usually isolated my boxes until I could find them and explain).  

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However, in the early 1990s my torso’s shape began to shift, such that by 1994 my cuirass ceased to fit well, resulting in increasingly poor ventilation and awful sleep problems for months. Making matters worse, I was unable to locate a replacement in my size or have a custom cuirass competently molded by an outside vendor. Thus began a distressing unwanted ordeal to switch to mask ventilation and a BiPAP machine in December 1994 — an effort Dr. Oppenheimer had actually begun suggesting months earlier.

 

TRANSITIONING TO A BIPAP

Shifting from a bulky technology that sucked my chest upward to a smaller lighter one that pushed air through my nose may sound like a no-brainer, but it really stressed my brain and my body. Back then, 1994, BiPAPs and nasal masks were still a new technology for home ventilation. The machines were basic and the masks ill-fitting and awkward. Moreover, few doctors and therapists were skilled at providing patients with a BiPAP on the best personal settings and a mask that fit without leaking or hurting.  

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I had a terrible time; the shift became a major ordeal. Because the cuirass had become so dysfunctional, I rushed to transition, trying to force the issue during the Christmas/New Year’s break while taking time off from work. But after a couple weeks of uncertain ventilation, mounting sleep deprivation, and erratic progress despite efforts by all parties to give me good advice and set the machine up, including in Kaiser’s pulmonary lab, I retreated back to a poorly-modified cuirass for several months.

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Then I renewed my efforts to make the shift, this time using a gradual approach in which I tried to start a night's sleep on the mask, then switch to the cuirass after a few hours for the rest of the night. I also added afternoon catnaps to gain experience adapting to the mask. Eventually, over about a six-week period, I increased the time I could spend on mask ventilation.  

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Most importantly, I began experimenting with the BiPAP’s settings on my own, seeking refinements through trial-and-error spread over months. Back then, fortunately for me, my BiPAP had five openly-accessible knobs for adjusting the settings.

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Thus I found I needed a higher pressure when asleep than when awake; so I raised the inhalation pressure (IPAP) from its initial 10 (i.e., 10 cm. H2O) to 12 (higher years later). Meanwhile, after trying various breaths-per-minute (BPM) rates, I kept returning to 20-21 BPM, which is what I had used with the cuirass (later I would prefer 19 BPM).

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Another knob let me choose the T (machine-timed), S (spontaneous patient-triggered), or S/T (combination) setting. My inhale was too weak to trigger the S, so the choice was between T and S/T. At the time my body preferred T, maybe because I was accustomed to it from my years on the cuirass, but also because on S/T, my every swallow or move triggered an untimely and unsettling blast of air into the mask.
 

Neither the directions that came with the BiPAP nor the therapists told me about the %IPAP knob. Yet, it plays a crucial role in the T and S/T modes by determining the length of time air is pushed into my lungs during the IPAP phase. It took me a while to discover this, and also to find the best setting for me – 40-45%.

 

Gradually, as I got used to the blasted mask and refined the BiPAP settings, I started falling asleep for brief periods with less delay, both at night and for afternoon naps. Another threshold was being crossed — but it took weeks, and I was still not staying asleep for long.

 

Two more adjustments settled matters. My BiPAP was set to an exhalation pressure (EPAP) of 4, a standard choice I’d not questioned. One night I dropped it to 3 and immediately had my first good night's sleep. (I would later drop it to 0.) Another improvement that helped my lungs do what they wanted to do – now that I understood better how to breathe in tune with the machine’s sensitive technology – was to shift from the T to the S/T mode.  

 

These experiences showed me that a change of just one point or step on any setting may make a major difference, for better or worse. This suggests that patients who have difficulty adapting might be well-advised to try experimenting with the settings – and expect that the settings that work best at first may not remain optimal as the process of adaptation advances.

 

Most doctors, therapists and vendors prefer to determine (and lock) the settings. Yet, in my experience, patients may have to take an active role in figuring matters out, even if this means trial-and-error experimentation on one’s own. Dr. Oppenheimer agreed. Thus as 1995 came to a close, I was fully on the BiPAP system — no more iron lungs or chest cuirasses for me.

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