Ventilator-Assisted Living©

Spring 1996, Vol. 10, No. 1

ISSN 1066-534X

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Read selected articles from this issue ...

Noninvasive Ventilation: A Successful Changeover
Tedde Scharf

Frog Breathing: Still Useful, Still Lifesaving
Judith R. Fischer, Cypress, California

Danish Observations about American Ventilator Users
Grethe Nyholm, RNP, and Henning Sund Kristensen, MD

On Holiday at Netley Waterside House
Anne Isberg

New York's Consumer-Directed Home Care Program: Chapter 2
Ira E. Holland

Passy-Muir Valve Helps Wean from Tracheostomy

New Danish Custom Nasal Mask

Tracheal Toilet and Speech

Book: Pulmonary Rehabilitation: The Obstructive and Paralytic Conditions

IVUN Bibliography

IVUN Directory Update

Update: HCFA Ventilator Policy

Swimming in Lake Shasta

Potpourri: Creative Writing Guides, EZ Keys for Windows, Christopher Reeve

Noninvasive Ventilation: A Successful Changeover

Tedde Scharf, Associate Director, Disability Resources for Students, Arizona State University, Tempe Arizona

IVUN News readers first met Tedde Scharf, who has limb girdle muscular dystrophy, through the Fall 7993 issue with her article “Advice for the new ventilator user.” A trach positive ventilator user since 1988, Tedde later wrote “Considering a Change to Noninvasive Ventilation” for the Spring 1994 issue of IVUN News.

On March 1, 1995, I traveled from my home in Tempe, Arizona, to HealthSouth Dallas Rehabilitation Institute (DRI) in Texas to have my trach removed. The much-anticipated trip had never materialized during a long three-year battle with the HMO insurance system in Arizona. In early 1995, my physician, Dr. Franklin Preiser, successfully convinced the new carrier, Blue Cross/Blue Shield, of the medical necessity for pursuing noninvasive ventilation due to a chronic, intractable trach infection. Blue Cross/Blue Shield supported the well-documented noninvasive ventilation method as a viable one for me. They negotiated a cost package with DRI for all medical expenses, however, I was responsible for transportation.

The primary medical team at DRI included Randall Rosenblatt, MD; Joseph Viroslav, MD; Shelley Morris-Tomazevic, RRT and Wilma Breaux RRT. For 14 years, this medical team has applied and improved noninvasive ventilation techniques to help more than 200 hundred individuals make successful transitions.

Upon arrival, I expected to be auctioned, but a respiratory therapist informed me, "We don't believe in auctioning at DRI.” Fleetingly, a sense of panic came over me. However, the therapist quickly taught me to clear secretions. He reclined my wheelchair to elevate my feet above my head, disconnecting my trach, and used the ventilator tube with a mouthpiece to enable me to take in large volumes of air while he applied a Heimlich-type thrust up and under the diaphragm. This technique caused the mucus to shoot up -and out of my lungs.

I was amazed at how quickly the secretions in mv lungs dried up when the auctioning stopped. Within half a day of my arrival at DRI, I had no significant secretions, just a normal clearing of the throat in the morning. I learned to use large volumes of air to stretch and expand the lungs which helps prevent atrophy and calcification of lung tissue. Air stacking helped me generate my own cough. Within 24 hours, I was fitted with a custom-molded Lyon nasal mask for night ventilation and a pneumobelt for day-time ventilation.

Daily I kept asking Dr. Rosenblatt when the trach would be removed. He was surprised at my eagerness to give up the security of the trach. The transition process includes careful evaluation of patient readiness before removing the trach. My blood gases were carefully monitored, as was my heart for stress. The team discussed my daily routines, caregiver system, and activities at work and home. Finally, on the third day, ahead of schedule, the trach was removed, and I relied on intermittent mouth positive pressure, the pneumobelt, and the nasal mask.

Back home in Arizona, the stoma refused to close completely, and, six months later, it was closed surgically by the same surgeon who had performed the tracheotomy eight years earlier. This certainly helped improve my speech.

The only drawback during the transition was the length of time it took to synchronize speech with breathing. While trached, I had learned to speak on inhalation and exhalation. Retraining myself to speak only on expiration was a challenge.

In October 1995, Bill Altaffer, a good friend and ventilator user, the Muscular Dystrophy Association, Carondelet St. Mary’s Hospital, and I coordinated two half-day workshops in Phoenix and Tucson on “Innovative Approaches to Respiratory Health Care: Noninvasive Assisted Ventilation.” The DRI team, John Bach, MD, from the University of Medicine and Dentistry of New Jersey, and local speech therapists were guest presenters. They provided hands-on demonstrations to Arizona health professionals and interested ventilator users and lay people on coughing techniques and the In-exsufflator machine, the Lyon mask, the pneumobelt, and frog breathing (glossopharyngeal breathing).

For years, I had tried unsuccessfully to learn frog breathing. Returning from the Phoenix workshop that evening, I met my neighbor who is a master at glossopharyngeal speech due to a laryngectomy after throat cancer. As I tried to demonstrate what I had observed at the workshop, my neighbor began to use the technique to talk to me. Suddenly, it clicked, and, Presto! I was frog breathing.

The final test of my new breathing methods would be the ability to deal with a respiratory infection. Unfortunately, I had that occasion this past winter when I contracted a serious viral infection which turned into bronchitis. Although I required several days of hospitalization, the new breathing techniques worked well. The medical staff, from the emergency room to the respiratory floor, were fascinated by noninvasive ventilation.

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

Read Tedde's article, "The Pneumobelt: Part of My Noninvasive Ventilation System" is in the Winter 2004 issue of Ventilator-Assisted Living.

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