Ventilator-Assisted Living©

Winter 1999, Vol. 13, No. 4

ISSN 1066-534X

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Read selected articles from this issue ...

My Quest for Ideal Ventilation
Julie Levine, California

Pneumobelt in Action
Tedde Scharf, MA, Arizona

Sip Technology instead of Tracheostomy
Joshua Benditt, MD, Washington

Paediatric Home Ventilation in the United Kingdom
Dr. Robert Yates, Manchester, England

CCHS: Are Nasal Masks Affecting Facial and Bite Alignment?

Pseudomonas aeruginosa

Respironics Introduces New Customer Service System

"Laptop" Ventilator Highly Rates
Barbara Rogers, BA, New York

Potpourri: Atrostim Phrenic Nerve Stimulator;;

Assisted Living for Ventilator Users:

More on Air Travel for Ventilator Users

My Quest for Ideal Ventilation

Julie Levine

photo of Julie LevineOn June 25, 1994, I received a telephone call from my neurosurgeon in New York City. (I had been living in New Jersey before moving to Southern California.) My MRI scan confirmed what I suspected – my brainstem tumor (ependymoma), which was removed eight years before, had returned. Two days later, my mother and I were on a plane to Manhattan. Recovery from my first surgery in 1986 at the age of 24 had been rapid. I walked out of the hospital in two weeks and after six months of outpatient physical therapy, I resumed my active life.

Anticipating the same quick recovery as before, I packed a suitcase for the hospital with a change of clothes, makeup, and a bathing suit, expecting to begin pool therapy immediately. I awoke in the hospital's ICU, looking up at my smiling neurosurgeon who was assuring me that the tumor was completely removed and would not bother me again. I was terrified and confused, for I could feel my body, but I could not move. After four weeks in intensive care with a breathing tube, I received a tracheostomy. My plans for my future were destroyed. I could not move and I could not breathe independently, due to aggressive surgery.

I returned to California via an air ambulance. The next six months were spent in five different rehabilitation facilities in California, futilely trying to do physical therapy and to be weaned from the ventilator simultaneously. I was exhausted and frustrated. No one understood my condition. Instead I was given antidepressants which, needless to say, resulted in further debilitating my respiratory system. I did not fall into any textbook category. I was "upside down," with strong legs but an extremely weak upper body. I could not lift my shoulders and arms, but I could take steps if my upper body was supported.

Within four months, I was free of the ventilator during the day, requiring night ventilation only. Finally, after eighteen months of therapy and sheer persistence, my trach was removed. I was fine for a week, then I went into respiratory failure. I refused to be trached again. My pulmonologist agreed to try another means of ventilation and suggested bi-level positive airway pressure or BiPAP®.

I have used the BiPAP® S/T system nocturnally for three years. I have tried every conceivable mask. The first year, I used hard plastic nasal masks that caused skin breakdown and infections on the bridge of my nose and lip. Finally, I switched to the Monarch™ Mini Mask which minimized skin breakdown but leaked. To achieve optimal ventilation, it must be placed on the nose in just the right place. I had to use a chinstrap with the Monarch™ mask because I sleep with my mouth open. Being unable to move my arms, I cannot adjust the mask if it moves during the night. I recently developed pain and pressure buildup in my right ear that led to hearing loss in the ear and caused me to seek other methods of ventilation.

Luckily, my respiratory therapist, William Rivas, was willing to try every available noninvasive method to help me survive with the best and most comfortable ventilation. First we tried the Porta-Lung that did not work because my neck is curved from my surgery and could not clear the aperture. Then there was a trial with a full-length pneumosuit that caused severe back and hip pain. Somehow, after sleeping this way for two weeks, my abdominal muscles became stronger, thus improving my gait and helping to hold my head up.

The next attempt was with volume ventilation: the PLV®-100 with a lipseal. But the PLV®-100 did too much of the breathing for me. When I stopped using the PLV®-100 in the morning, I was extremely weak with tight muscles, making it very difficult to regain strength during the day. (My breathing muscles must have improved so much that when I did not use them, I lost strength.) And the lipseal proved too big for my mouth.

My current solution is to use BiPAP® with the Monarch™ Mini Mask at night and the PLV®-100 during a short rest period in the afternoon. To keep my mouth closed – instead of a chinstrap with the Monarch™ – I had my dentist make a mouthpiece from a mold of my teeth. (I place a dab of Fixadent on it to prevent the mouthpiece from falling out). I lowered the BiPAP® pressure to help my ears and had my ear doctor put a tube in my problem ear. Then, I had my dentist custom-make a lipseal with an attached molded inner tube to use with the PLV®-100.

Recently, my pulmonologist found that there was an increase in the amount of air flow, indicating that my lungs have expanded more and improved. My abdominal muscles are also stronger, so I no longer breathe with my neck muscles and am finally initiating my own coughs.

When adequately ventilated, I have the strength for physical therapy which I do every day for four to six hours. I devised a rudimentary system of pulleys which I use every day, along with an arm and a recumbent stationary bicycle. Twice a week, with the assistance of aides, I walk the width of a swimming pool for 10 laps.

It has been five years since my surgery and I continue to forge ahead. I hope to eventually regain full body function and become independent again. If anyone has suggestions for improving and regaining shoulder and arm mobility, I would greatly appreciate receiving them.

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