Ventilator-Assisted Living©

Fall 1995, Vol. 9, No. 2

ISSN 1066-534X

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Read selected articles from this issue ...

Consumer-Directed Home Care Program Saved from New York Budget Ax and Expanded
Ira E. Holland, New York, New York

The Tracheotomized Patient: Tracheal Toilet and Speech

Suggestions for Avoiding Respiratory Complications
John R. Bach, MD, Newark, New Jersey

Life with a Tracheostomy: A Personal Decision
Michael Luber, Milwaukee, Wisconsin

In-Home Care Standards for Frequency of Ventilator Tubing Changes
Teri Nikolai Wilson, RRT, RPFT, Dayton, Ohio

A Summer Plague: Polio and Its Survivors
Book by Tony Gould

Potpourri: Report on Domiciliary Mechanical Ventilation in Denmark; Ventilator Registry Project by the American Association of Respiratory Care; White Trach Caps from Mallinckrodt; Christopher Reeve recently injured


Life with a Tracheostomy: A Personal Decision

Michael Luber, Milwaukee, Wisconsin

Tracheostomy. Ventilator. Gastric tube. These are all words that at one point in my life brought a sinking feeling to my stomach and a tear to my eye. With time and education, however, these words have come to mean a new lease on life and a better quality of living.

Genetic testing to determine the exact type of muscular dystrophy I have was inconclusive, but suggested I have some type of either Becker's or limb girdle. In January 1992 I learned I was underventilated, and this discovery led to a long series of life-altering decisions ultimately culminating in decisions to accept a tracheostomy tube and a gastrostomy tube in March 1994.

For more than a year, I used a BIPAP® system, and managed to put the thought of tracheostomy and full-time ventilation out of my mind. But I was not breathing well enough and I had begun to lose weight. To me, the picture of a ventilator user with a tracheostomy connoted someone unable to leave the house, unable to speak, and with a poor quality of life. I had difficulty picturing myself wheeling around with a ventilator on the chair and this big tube coming out of my neck. Also, as a psychotherapist, I have come to realize how obvious my disability is and what an important role it plays in therapy. Thus I was very concerned about how another obvious contraption would affect therapy.

Many of these fears began to shatter when I attended a muscular dystrophy telethon. I struck up a conversation with a woman about my age, and during the course of the conversation was surprised to learn that she had a tracheostomy and used a ventilator. She was far from my image of a ventilator user. She talked normally, had a scarf draped around her neck and shoulders disguising the tubing, and I did not hear or notice the ventilator on the back of her chair. As she revealed the many pitfalls and advantages of life with a tracheostomy and ventilator, I realized that here was a very independent and productive woman.

The months rolled by and my weight continued to decrease. I noticed that I was not feeling as good as I wanted to feel. I did not have the energy that I needed to be as productive as I wanted to be. I decided that the safest medical procedure would be to have both a tracheotomy and gastrotomy performed at the same time. Because I feared the surgery, I talked with several doctors to find the best and safest use of anesthesia, and was reassured. I also feared the hospitalization, but was informed that I would be on a CCU floor, strictly monitored, with one nurse for every two patients. As for the inability to communicate, I researched some technological devices. I was told that I would not be able to talk for the first two days after the operation, and would need some way of getting the nurses' attention. I discovered a beeper system that can be attached to one's forehead which can be triggered by a simple raising of an eyebrow. Although this was quite sensitive, it actually did a terrific job in letting my needs be known.

After the operation, I discovered that I had worried much about nothing. The operation was the easy part: I had taken a nap and awakened with two extra holes in my body. After the first two days, I was able to talk, thanks to the Passy-Muir Tracheostomy Speaking Valve.

The recovery was much more a slow and difficult process, both emotionally and physically. I and my family soon realized that we were unprepared to take care of the extra medical needs. We needed extra nursing and support care, and it was difficult because I had several different individuals taking care of me who were all learning the procedures for what needed to be done. I was not used to the lack of privacy, and there were many times when I just wanted to be left alone. As the weeks passed, I began slowly to gain weight and to feel stronger.

I was in conflict with the doctor's urges to try to wean from the ventilator. I was able to have free time from the ventilator for a few hours, but during that period I was very tired. I found I was just sitting and watching television and not doing anything. I realized that I would rather have energy and use the ventilator longer in order to be more productive and feel good. I resolved that I was not going to be able to wean myself free of the ventilator.

For me, the advantages of tracheostomy, gastrostomy, and ventilator are: increased energy; increased appetite and weight; decrease in stomach and bowel problems; normal speech, easier swallowing, and less fear of choking, because of the Passy-Muir Speaking Valve; and normal oxygenation.

The disadvantages are: suctioning; risks of infection; round-the-clock attention in case a tube becomes disconnected (a baby intercom is helpful); trach care and cleaning.

Once I started feeling better, I was frequently asked, "Aren't you happy you had the surgery?" I did not know how to respond. Finally I found the right response: "No, I am not happy about the surgery. I do not think anyone could be happy about having surgery. I do, however, feel I made the right medical decision, and if I had to make the decision again, I would make the same choice."

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