Ventilator-Assisted Living©

Winter 2002, Vol. 16, No. 4

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My Experience with Noninvasive Ventilation

Steve White

I have ALS, also known as Lou Gehrig’s disease. I am totally paralyzed and dependent on a ventilator to breathe, but I have survived more than seven years due in large part to my decision to utilize noninvasive ventilation.

I believe in starting to use noninvasive ventilation early. It helps ensure a good night’s sleep, so that you have more strength and energy during the day. I believe it also slows down the respiratory decline. As with everything, it takes time to obtain the equipment and supplies, find the best interface and supplies, and learn how everything works. I began using noninvasive ventilation during the night when my forced vital capacity dropped to 75% of normal.

My initial experience was not positive. The home care dealer delivered a Respironics BiPAP® S/T (www.respironics.com) and a nasal mask. The inspiratory pressure (IPAP) was set at 15 and the expiratory pressure (EPAP) at 5. When I asked how to adjust the settings, I was told the unit required a special gauge and could only be changed by a respiratory therapist after getting a revised prescription from my pulmonologist. I was never able to tolerate the setup for more than 20 to 30 minutes. The mask was uncomfortable and leaked no matter what I did, but the high pressures seemed to be the main problem.

Frustrated, I decided to learn more. From the alt.support.sleep-disorder newsgroup on the Internet, I learned about a large variety of masks and that I should try several until I found one that worked for me. In one of Dr. John Bach’s books, I read that people with ALS rarely need supplemental oxygen. I also read that higher than necessary EPAP settings are often prescribed be-cause this is a common setting for sleep apnea patients who need pressure while exhaling to keep the airway open. And, I read that suggested settings for IPAP range from a low of 6 to a high of 18, with people usually starting at the low end of this range and gradually increasing the pressure.

After discussing the problems with my pulmonologist, I learned that he had prescribed titrating the IPAP setting, slowly increasing it over time to a maximum pressure of 15. He was not surprised that I could not tolerate that high a setting. He contacted the home health dealer and requested a BiPAP unit I could adjust and several other masks to try. He also prescribed an EPAP setting of 2-3 and an IPAP setting to be adjusted to patient comfort.

The BiPAP® S/T was swapped for a Healthdyne Quantum PSV (since discontinued) which had front panel controls and readouts for adjusting settings. I gradually increased IPAP from an initial setting of 7 to a setting of 17. The respiratory therapist also brought 8 to 10 different masks for me to try. I found ResMed’s Mirage® nasal mask (www.resmed.com) and Puritan Bennett’s ADAM™ system with nasal pillows (www.puritanbennett.com) to leak the least and to be the most comfortable. I used the Mirage at night with a chinstrap to keep my mouth closed. When I needed to use the bilevel unit during the day, I used the nasal pillows because I could wear my glasses. (ResMed has since introduced the Ultra Mirage® that I currently use. I also currently use the nasal pillows with the Breeze™ SleepGear™.)

The bilevel unit worked well until my breathing became weaker, at which point I had some problems inhaling with enough force without consciously triggering the unit. It still worked but was much less comfortable. While it was in for repairs, I was loaned a Puritan Bennett KnightStar™ 335 with an adjustable sensitivity feature that determines how strongly you need to inhale to trigger the unit. This unit was much more comfortable to use.

I started investigating a volume ventilator because I was using the bilevel almost fulltime in what amounted to life support, and my ALS had progressed so that I was almost totally paralyzed. I needed a unit with alarms. After considerable research, I selected the LTV1000® from Pulmonetic Systems, Inc. (www.pulmonetic.com) and attended an in-service training session before trying a demonstration unit.

My insurance carrier initially rejected coverage for the LTV, considering it a backup for the bilevel, but I immediately contacted my employer, my case manager, and my pulmonologist to clarify that I needed a ventilator that was approved for life support. The alternative was a tracheostomy, which would be much more costly. The insurance company quickly approved the LTV. (I now have a pair of LTV950® ventilators.)

The LTV was mounted on the seatback of my power wheelchair using a slide bracket to allow easy transfer between my wheelchair and a bedside stand. A battery box containing a U1 gel battery was also mounted on the back of my wheelchair. This MK battery (www.mkbattery.com), that we charge nightly, will power the LTV for about eight hours. I use the LTV in pressure mode, more comfortable for me than the volume mode, with essentially the same settings that I used for the bilevel.

About six months after I obtained the LTV, I caught a chest cold and was hospitalized. Several doctors, including my pulmonologist, said it was time to get a tracheostomy. I refused. They tried various techniques to clear my lungs including deep suctioning, nebulizer treatments, quad cough, and a percussion vest – with only modest success. I asked about the In-Exsufflator, now the CoughAssist™ (www.jhemerson.com) which I had read about in Dr. Bach’s book and on the Internet. The hospital had one but it had not been used in years, and claimed they were no longer certified to use it. After several days of antibiotics and repeated attempts by the respiratory therapists to remove secretions from my lungs, I asked to go home even though I was still quite weak.

Once home, the home health dealer brought the CoughAssist for me to try. It worked superbly, and I coughed up large amounts of secretions in about 45 minutes. I used it several times over the next few days and rapidly recovered my strength. Within a week of leaving the hospital, I was back to feeling normal and returned to work. My insurance company purchased the CoughAssist that I use as needed to clear secretions or aspirated food or drinks and to expand my lungs.

I do not plan on a tracheostomy until my swallowing worsens to the point that I cannot manage my saliva. Then I will get one primarily to protect my airway. I hope that is still a couple of years away. Until then, I firmly believe noninvasive ventilation is the answer.

Editor’s Note: Steve lives in Oregon with his wife, Janis, who is his primary caregiver, and their teenage daughter Alissa. He uses augmentative communication, currently a TrackIR head mouse (www.naturalpoint.com) and Skeleton Key onscreen keyboard (http://www.myskeletonkey.com) with a sophisticated audio/video control setup. He has written articles on the subject available online (www.alsa-or.org/adaptive/adaptive).

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