Ventilator-Assisted Living©

Spring 1994, Vol. 8, No. 1

ISSN 1066-534X

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Read selected articles from this issue ...

Other Advice for Ventilator Users
John R. Bach, MD, Newark, New Jersey

Considering a Change to Noninvasive Ventilation
Tedde Scharf, Tempe, Arizona

Positive Pressure by Trach: My Choice
Jerry Daniel, Vancouver, Washington

Update: HCFA Ventilator Policy

Ventilator-Assisted Infants with Bronchopulmonary Dysplasia
Catherine Hermabessiere, MD, Brigitte Monier, MD, and Liliane Cathelineau, MD, Margency, France

CCHS Conference
Nancy Stone, Indianapolis, Indiana

The Individual Remmer Nasal Mask
Lennart J. Remmer, Remafa Tech, Hagersten, Sweden

Meet Toby Tracheasaurus

Mask Program Helps Health Care Professionals with Patient Compliance and Comfort

Camps for Ventilator-Assisted Children

Potpourri: ECRI Report Evaluates Breathing Circuits;
Standards of Care for the Ventilator-Assisted Individual: A Comprehensive Management Plan;
Enhanced Cough in Spinal Cord Injury;
West Virginia Support Group for Ventilator-Dependent Individuals and Families

Considering a Change to Noninvasive Ventilation

Tedde Scharf, Tempe, Arizona

First, let me tell you about the circumstances which have led me to investigate noninvasive ventilation. I have used trach positive pressure ventilation for the past six years, after respiratory failure at age 46 due to limb girdle muscular dystrophy. In 1988, when respiratory failure occurred, I was married and working fulltime as the director of a large program for students with disabilities at Arizona State University.

When the initial medical crisis passed, my physician resorted to tracheostomy after other methods such as the turtle shell (which only caused bruises and contusions) failed. Although at least one rehabilitation program in the East was working with noninvasive ventilation in 1988, I could find none in Arizona or the West Coast.

For the first few years, the trach did not seem to be a bad solution, physically. I was breathing better than I had for years. Gone were the perpetual headaches, drowsiness, bloated body tissue, fatigue, and memory lapses. I had more energy and longer endurance. Personally and socially, I learned to accept the changes exacted by the medical ramifications of my situation as, suddenly, there was an increased need for personal care attendants, knowledge of medical procedures, and I found myself surrounded with tubes and machinery in a large power wheelchair. My marriage dissolved and I threw myself headlong into my career.

Then, about four years ago, I began to have pseudomonas infections around the trachea site. Antibiotics quickly killed the infection and life went on in the fast lane (I travel by plane across the country several times a year, and generally am an active university administrator). A year ago, my system became resistant to the most effective oral antibiotic that attacks pseudomonas. The indicated medical treatment was intravenous antibiotics that must be administered in a hospital or by home health care nurses. Both are very expensive. Hospitalization is also time consuming and would have impacted my job. I elected to let nature take its course and fight off the infections naturally.

Letting nature take its course has been a fairly successive mode of treatment. However, I have side effects that are not pleasant, such as headaches, extreme fatigue, severe coughing spasms, excessive mucus, and a bad taste. I am essentially right back where I was in 1988, except I am not in respiratory failure.

When I learned about noninvasive ventilation, I was somewhat skeptical. I was reasonably comfortable with my trach and ventilator, and, most important, I could talk as well as anyone via a Passy-Muir Tracheostomy Speaking Valve. Speech is essential to my job. However, the long-term effects of the constant infection began to concern me, as well as the expenses involved with trach care, the equipment and supplies, and the costs of extra attendant care for auctioning, etc.

In the past year, I have relentlessly prevailed upon my current physician to research techniques for transferring to noninvasive ventilation. He is supportive, but unfortunately, due to the present HMO insurance available to state employees in Arizona, it is a slow process to obtain anything but basic medical care. We are taking one step at a time. The actual switch requires a rehabilitation team in a closely-monitored medical unit. I will probably need to use a nasal mask at night, but during the day I will use mouth positive pressure ventilation.

I have found only three rehabilitation centers in the country who are routinely switching people from invasive to noninvasive ventilation: John R. Bach, MD, Department of Rehabilitation Medicine, University Hospital, Newark, New Jersey; Nicholas S. Hill, MD, Rhode Island Hospital in Providence; and Randall L. Rosenblatt, MD, Health South-Dallas Rehabilitation Institute in Dallas, Texas.

Ultimately, noninvasive ventilation can improve the overall quality of life. It is not necessarily the right change for everyone with a trach to make, but, for me, it is an option worth investigating. I certainly plan to continue my pursuit of another choice in ventilation and improved ability to work, socialize, contribute, and live. Stay tuned ...

Positive Pressure by Trach: My Choice

Jerry Daniel, Vancouver, Washington

The decision to use a nasal/face mask with positive pressure when a person finds her/himself in need of a volume ventilator at night during sleep and maybe rest periods during the day may be the best decision for a new part-time ventilator user. Sometimes, however, the mask cannot be tolerated, whether for feelings of claustrophobia, skin breakdowns, facial pains from the mask, etc., and may lead to dental problems as one gets older. Then a decision about a tracheostomy needs serious consideration.

The most revealing history of people undergoing tracheostomies for positive pressure ventilation can be found with those polio survivors who went to Rancho Los Amigos Hospital in Downey, California, during the polio epidemics of the 1950s. A large number of polio survivors needed complex spinal fusions and other corrective orthopedic surgeries that were pioneered by Jacquelin Perry, MD, and Vernon Nickel, MD. One of the first procedures the patient had to consent to was a tracheostomy before any surgery or body cast could be done. The tracheostomy made surgery and long-term recovery with positive pressure much more manageable. When all the surgeries had been completed, the patient usually had the choice of either keeping the trach and continuing to use a portable positive pressure ventilator which was in the development stages at the time or returning to the iron lung, the rocking bed, the cuirass, etc. Many polio survivors became experts at frogbreathing for ventilator-free time.

I was one of those patients, and most of the people I knew chose to keep the trach. One advantage was that a ventilator user with little use of the hands could hook up to the vent in a minute or two and use the ventilator sitting up or lying down on the back or either side. I and my friends learned that once the stoma healed with healthy scar tissue, we could touch the trach with no feeling or irritation, and those of us with functional hands learned to do their own trach care.

Most of us did and still do, have uncuffed trach tubes. During sleep, there is a tendency for some air leaking out of the mouth, but that can be compensated for by slightly increasing the ventilator volume. Some of us need suctioning more than others and some of us get bronchitis more often, but we like the convenience of using trach positive pressure. The uncuffed trach tube also lets us talk during the ventilator's inspiratory cycle. Eating is more enjoyable with trach positive pressure, too, especially at dinnertime, because breathing gets to be hard work toward the end of the day.

I use a wheelchair and I have limited use of my hands. I do not use the ventilator while working or when going outside the home, but I do use it when sitting around the house and feel I get better rest using it then. Not being able to wear a dress shirt and tie is somewhat of a disadvantage, but turtlenecks and crewneck sweaters can cover up the plugged trach when I go out in public. I find trach positive pressure to be comfortable and conducive to my active lifestyle.

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