Ventilator-Assisted Living©

Fall 1996, Vol. 10, No. 2

ISSN 1066-534X

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Read selected articles from this issue ...

IVUN News Celebrates 10th Anniversary

CCHS Data

Choosing Life, Even on a Ventilator
Robert C. Horn III

Living with Pompe Disease
Mary Garrett

Living with Acid Maltase Deficiency
Larry Homolka, PhD

Schools and Programs for Pediatric Ventilator Users

New Equipment and Aids
Monarch Mini Mask, PB 335 Respiratory Support System, Hayek Oscillator, RoEzIt®, Electronic Speech Enhancer™

Potpourri: Living SMArt, The Reeve-Irvine Research Center, High Quadriplegia, Exploring Breathing Support Options

LIFECARE Sold to Respironics

A Reader Writes

Books

IVUN Bibliography

People in the News ... Grethe Nyholm, RNP; Richard Daggett


IVUN News Celebrates 10th Anniversary

IVUN News first appeared in 1987, and now, 10 years later, the newsletter has broadened its scope and reach, evolving into a highly specialized publication, prized for its combination of straight-forward information by ventilator users and health professionals alike.

Networking among ventilator users, pulmonary physicians, nurses, respiratory therapists, and ventilator equipment manufacturers and dealers is reflected in each issue of IVUN News. The newsletter balances information on the latest in nasal/facial masks, communication with a tracheostomy tube, and warnings about underventilation with stories about sailing, sky diving, and intercontinental travel. IVUN's ventilator users include the old pros: polio survivors, people with high spinal cord injury and muscular dystrophy, as well as the new pediatric population children with BPD, CCHS, Pompe's disease, etc. The annual directory of home ventilation experts comprises a truly international network.

A prime example of IVUN networking occurred last May. Annelie Coetzee of South Africa contacted Joan Headley in the GINI offices requesting help in expediting the repair of her Companion 2800. Coetzee has idiopathic scoliosis and uses her ventilator during the night. She wrote "... I have a Companion 2800 ventilator which I bought in 1989. It has never given me any problems, but three days ago, it broke down. The problem was eventually found to be a faulty circuit board. The local agent of Puritan-Bennett told me that it could no longer be repaired and that I must trade it in for a Companion 2801 ...

"I am really desperate to have the ventilator repaired as I do not have the means to buy a new one. Due to the state of our country's economy and the poor exchange rate, ventilators cost the earth here. (I paid R20,000 in 1989 – equivalent to $5,000 US today – which was then the equivalent of my gross annual salary as a translator.) My medical insurance also only pays out R2500 per year for medical appliances such as ventilators."

Headley contacted Puritan-Bennett in the U.S., determined that the Companion 2800 could indeed be repaired, and faxed Coetzee the phone numbers of Puritan-Bennett in London and Andre Thobois, a medical equipment repairer in Johannesburg. Coetzee replied, "I am glad to say that the matter with my Puritan-Bennett Companion 2800 has now been resolved and that Puritan-Bennett in London has done more that I ever hoped for. ML Thobois told me that he had just spoken to ML Chapman of Puritan-Bennett in London and Mr. Chapman said that they had decided to do a trade-in on my machine. They would give me a demonstration model Companion 2801 with only 1,000 hours in exchange for my ventilator which has already done 16,000 hours. My old ventilator would then be repaired and kept in Cape Town for a backup. “All this would be free of charge. Needless to say, I was so surprised I was speechless.

A follow -up visit by the regional manager of Puritan-Bennett, Mr. Featherstone, answered my questions and gave me the assurance that the Companion 2801 was still manufactured in Europe and would be serviced for some time to come. Both he and Mr. Chapman have been extremely kind and helpful. I have not yet received the Companion 2801, but ML Thobois has in the meantime been able to repair my old ventilator and return it to me. After sleeping with a strange and noisy ventilator for a month, it is heaven to have my own trusted ventilator back. Thank you again for your help."

IVUN News looks forward to the next 10 years of networking and its special role in connecting people with people.

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