Ventilator-Assisted Living©

Fall 1997, Vol. 11, No. 2

ISSN 1066-534X

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Read selected articles from this issue ...

Computer Becomes Therapy, Link to World for Patient
Anne Federwisch, OTR

Adapting to Masks and BiPAP®
David Ronfeldt

Living with Arthrogryposis
Janet Prebul, Las Vegas, Nevada

CCHS Registry

CCHS Update: Matt Stone

Forum on Home Mechanical Ventilation: May 1997

The Danish Experience
Grethe Nyholm, RNP

The Japanese Experience
Yoichi Sakakihara, MD, PhD

The Japanese Experience
Kimiyo Sato

The American Experience
E.A. Oppenheimer, MD

MDA Publishes ALS Guide

Monitoring Respiratory Function
John R. Bach, MD

Potpourri: Frog Breathing video with Gary McPherson; FES Information Center;
Nellcor Puritan Bennett was acquired by Mallinckrodt; Phantom Nasal Mask from SleepNet;
Alliance for Technology Access (ATA)


Adapting to Masks And BiPAP®

David Ronfeldt

As a respiratory polio survivor, I spent many months during 1949-1950 using an iron lung. After that, I was able to breathe quite well on my own, despite limited vital capacity, until 1978, when I was hospitalized twice with respiratory failure. I began using a chest shell at night. This was adequate until 1994, when the chest shell ceased to fit well.

Thus began my efforts to switch to mask ventilation and the BIPAP® system. I rushed into the transition, trying to force my way during the December holiday break with time off from work. It turned into a major ordeal, and after a couple of weeks of uncertain ventilation, mounting sleep deprivation, and erratic progress, despite encouraging efforts by many sides, I retreated to an old, modified chest shell for several months.

I renewed my effort, this time using a gradual approach in which I started a night's sleep with the mask and BIPAP®, then switching to the chest shell after a few hours to complete the night. I tried afternoon catnaps to gain additional experience adapting. Eventually, over a six-week period, the time spent with the mask lengthened.

I have spent over two years using only the mask and BIPAP® for respiratory support during the night and for daytime naps. Because of this experience, I believe there are three steps to adaptation: getting accustomed to the mask, learning to fall asleep, and staying asleep.

Getting Accustomed to the Mask

The process begins by wearing the mask in order for the face to become accustomed to it. This may take several weeks. It is important to get the right mask in the right size. I tried several masks and nasal pillows, but none felt right until the Sullivan "bubble" mask which I have used for two years. (Fortunately, my doctor recommended that the vendor provide several different masks for me to try. This is not standard practice, but it should be. Perhaps a "beginner's package" of several different masks?)

One weird experience with the mask was a sensation that the air inside it, after exhalation, was not fresh. It seemed a bit stifling. I was reassured that the sensation was common for first-timers. I relieved it by opening one of the tiny ports I found on the mask and that provided a sensation of fresh air. After I became accustomed to the mask, I found no reason to continue keeping the port open. I was informed that I should not have done this because it has the effect of reducing the air inflow pressure. I had not felt much difference in the pressure, and a bit of relief here and there made it easier to cope with the mask experience.

I encountered a tendency in some therapists to fit me with mask sizes which were a bit small; I think a bit large may be preferable. I was told that I would have to shave off my mustache for the mask to fit well, but my mustache never proved a source of leaks. I deduced that if the mustache hairs are fairly thick, but not bushed out, and long – down to the top of the upper lip, the mask may press down on the hairs lengthwise and not lose the seal. If the hairs are trimmed short, then the mask may ride on the stubby tips of the hairs and lose the seal.

Learning to Fall Asleep

The next step is to fall asleep wearing the mask. I could not fall asleep for more than a few seconds in my first effort. Part of this step is just sticking with the process and I was more successful later. It also is important to get the proper settings on the BIPAP® S/T system.

I found the T setting worked best at first, partly because on the S/T setting every swallow or other movement would trigger an untimely, disorienting blast of air. I did not know about the %IPAP knob which plays a crucial role in the T setting by determining the length of time air is pushed into the mask during the inhalation cycle. It took a while to find the proper setting for me. I found that I needed to increase the IPAP setting from about 10, which was fine while I was awake, to a little more than 12, to compensate for shallower respiration during sleep.

Gradually, as I became used to the mask and made small refinements in the settings, I started falling asleep for brief periods with less and less delay, but I still was not staying asleep for long.

Staying Asleep

The third step is staying asleep for several hours. By now, I had a good mask and the right IPAP settings. I had been using an EPAP setting of 4, but one night I dropped it to 3, and immediately had my first good night's sleep. Another change that helped was to shift from the T to the S/T setting. I had adapted enough that I felt the T setting was not quite matching what my lungs wanted to do. I now had enough experience to know when to swallow so as not to trigger the inhalation cycle in the S/T setting.

I know that doctors and respiratory therapists prefer to determine the proper settings, but when an individual is having trouble adapting, he or she should take an active role in experimenting with the settings – a point with which my doctor agrees.

Retrospect

The whole process took many months during 1995, but I consider myself adjusted and thankful for the mask and BIPAP® system. However, this does not mean I am a completely happy user. I continue to have a difficult time with extreme dry mouth -- in which my lips, gums, tongue, roof of my mouth, and front of my throat are dried out and stuck together. Saliva flow has ceased. It seems to start right after I fall asleep and continue through the night. Therapists and other users insist I must be leaking air through my mouth, but I am convinced this is not the case. A humidifier can help with nose and throat dryness, but I am not bothered by that, and the humidification I have tried has had no effect on my dry mouth. I know what may make it worse, e.g., some foods and drinks, medications, higher settings, but I cannot find a way to resolve the problem. I have had hopes for a chinstrap, lipseal, hose positions to ease the mask's pressure on the upper lip, herbal syrups, certain foods, etc., but to no avail.

Thanks to the BIPAP® system and mask, I know I am breathing better than I did with the chest shell. The new technology is a lot easier to travel with than the old and so much more reliable and sturdy that I do not need to carry a backup machine – decisive pluses!

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