PEOPLE STORIES

From invasive to noninvasive ventilation: a possible changeover? The experience of Tedde.

Tedde S., Tempe, Arizona, USA, born 1942, is Associate Director of Disability Resources for Students at the Arizona State University in Tempe, Arizona, USA, and has Limb-Girdle Muscular Dystrophy.

In 1988, at the age of 46, Tedde had acute respiratory failure due to pneumonia and was placed on 24 hour ventilation via a tracheostomy. Having suffered headaches, drowsiness, fatigue, memory lapses, and blotted body tissues for several years, the tracheostomy actually improved her life. Physically, breathing was significantly improved, as well as energy, endurance, memory, alertness and speech volume.

 

The new situation, however, requires acceptance and adaptation, increased need for personal care assistance, more knowledge about medical procedures, a suitable wheelchair, ajustment to a life with tubes and machinery. Her marriage dissolved and she threw herself headlong into her career.

 

Medically, her condition began to deteriorate when she developed a pseudomonas infection around the trachea site which became rapidly resistant to the most effective oral and topical antibiotics. The infection would have required medical treatment of intravenous antibiotics administered in a hospital or by qualified home health nurses. Therefore, Tedde decided to let nature take its course and fight off the infection naturally.

 

In the meanwhile, Tedde heard about noninvasive ventilation and she began to consider the possibility of switching to this relatively unknown form of treatment. This was not easy because the (a) the health insurance for State employees in Arizona refused to cover anything but basic medical care, and, (b) the nearest rehabilitation centre which routinely switches people from invasive to noninvasive ventilation (three at that time in the USA ) was in Dallas, Texas.

 

Finally, on March 1, 1995, she traveled from Tempe, Arizona, to HealthSouth Dallas Rehabilitation Institute (DRI) in Texas to have her trach removed. Initially, respiratory therapists taught Tedde several coughing techniques for eliminating secretions without suctioning. Using increased ventilator volumes she learned how to stretch and expand the lungs which helps prevent atrophy and calcification of lung tissue. Air stacking helps her generate her own cough. Within 24 hours, she was fitted with a custom-molded Lyon nasal mask for night ventilation and a pneumobelt for day-time ventilation. The trachea was removed on the third day and she has not been suctioned since!

 

Tedde returned to Arizona with the new system. However, the stoma refused to close completely. Nine month after the switch to noninvasive ventilation, it was closed surgically by the same surgeon who had performed the tracheostomy eight years earlier. This significantly improved her speech.

 

In conclusion, the transition to noninvasive ventilation has meant the end of chronic infections and suctioning, decreased cost, and less dependence on constant personal care and, therefore, greater independence. For Tedde, noninvasive ventilation has made all the difference.