Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: SUNDAY, April 16, 1995 TAG: 9504180074
SECTION: NATIONAL/INTERNATIONAL PAGE: A-9 EDITION: METRO
SOURCE: Associated Press
DATELINE: WASHINGTON LENGTH: Medium
His doctor didn't know there was an alternative. But Dr. John Bach does. The New Jersey physician is out to change that, sewing up patients' tracheas and helping them breathe again with a simple polio-era machine unearthed from a museum.
``A week ago, I couldn't breathe on my own for five minutes, and today I've been fine for five hours and back at work,'' said Smith, a State Department terrorism specialist with Lou Gehrig's disease. Smith lives in Falmouth, Va.
``People like me are being put through a chamber of horrors, and there's no need,'' he said.
Neuromuscular diseases such as Lou Gehrig's, muscular dystrophy or paralysis weaken chest muscles until victims can no longer breathe easily or cough to clear their lungs of dangerous mucus.
Typically, these patients get a tracheotomy - a tube inserted through a hole drilled in the throat so air can be pumped in and secretions suctioned out. The opening is vulnerable to lethal bacteria and patients routinely get pneumonia. Often, they can't speak. Constant care to keep the tubes open forces many into nursing homes.
There is a non-invasive alternative that few doctors offer, contends Bach, of the University of Medicine and Dentistry of New Jersey. Key is a 1952 machine called the Cof-flator that, when held to the mouth, sucks air from the bronchial tubes to induce a cough that patients can't force unaided.
Once patients can clear their lungs, they can breathe with standard oxygen masks or with an easily learned inhaling technique, says Bach, who travels the globe to push non-invasive respiratory care.
Not every patient qualifies, cautioned Dr. Norma Braun, an American Lung Association specialist who also practices non-invasive respiratory care at Columbia University. Some are just too weak or don't do the techniques properly - and it's not a cure for these ever-worsening diseases.
``When it's effective, it's wonderful,'' she said. ``When it's not effective, it's a disaster.''
Ventilators that send continuous oxygen through the nose or mouth became popular in the 1970s, but they didn't help many neuromuscular patients because they didn't solve the coughing problem.
The Cof-flator had disappeared because, in the 1950s, tracheotomies replaced the cumbersome iron lung as the standard treatment for polio, and quickly spread to other ailments. With trach tubes, patients don't cough; their lungs are suctioned.
But some polio patients at New York's Goldwater Memorial Hospital refused trachs, and many are still breathing with old Cof-flators 40 years later. If they could, Bach reasoned, so could others.
He found a Cof-flator in a medical museum and talked the J.H. Emerson Co. of Cambridge, Mass., into updating it. In 1992, Emerson received government permission to sell its new In-Exsulflator.
With the coughing aid, Bach's patients then breathe either with oxygen masks or by learning to pull in air with their tongues instead of their weakened diaphragm, the way a frog breathes by gulping or the way one drinks from a straw.
However, this doesn't fully inflate their lungs, so patients do daily exercises to keep the unused portions from shriveling - pumping in extra large breaths and holding them.
Few doctors offer non-invasive care to neuromuscular patients - an advocacy group called the International Ventilator Users Network has found fewer than 100.
Bach says that's because insurers quickly pay thousands of dollars for a tracheotomy, but they won't pay to remove trach tubes or for the time needed to teach patients to breathe.
``I'll never get paid for what I do,'' agreed Columbia's Braun. ``But the task is to find a system that gets the patient back to the functional life they want to live.''
by CNB