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Ventilator-Assisted Living©

Summer 2001, Vol. 15, No. 2

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Percutaneous Tracheostomy: My Choice

Steve Fowler

In March 1997, after noticing a peculiar weakening of the right hand and breathing capabilities, I was diagnosed with ALS. At that time, acceptance of the use of mechanical ventilation early in the progression of ALS was not as prevalent as it is today. Several doctors, including my ALS specialists at UCLA, refused to write me a prescription for a bilevel unit. In some respects this was fortuitous because I acquired a volume ventilator by visiting John Bach, MD (an ardent advocate of noninvasive mechanical ventilation for people with ALS) in Newark, New Jersey.

I successfully used the volume ventilator noninvasively for 40 months, but weakening speech and the feeling of nocturnal suffocation made me aware that I needed to consider a tracheostomy … or die.

On March 5, 2001, I underwent a percutaneous tracheostomy at Barlow Respiratory Hospital in Los Angeles. I was given a combination of valium and morphine in order to induce a state of "conscious sleep." I was then intubated and a camera was passed through my mouth into my trachea. A needle was inserted into my trachea after the camera ensured that the needle was properly placed. A wire passing through the needle was expanded by running a series of dilators through it until the aperture became the size of the trach tube. The tube (cuffed) was then inserted and the procedure was complete.

The entire process lasted about twenty minutes, and the doctors were willing to send me home after 24 hours, but I stayed four days while I set up nursing care at home. During my stay I only took four Tylenols for pain.

Aside from chewing my lip to pieces against the intubation tube, the operation was painless. Among my vaguely acknowledged concerns was speculation about how I would react to air bypassing the nasal passages that had been bathed by every breath I had ever taken. Strangely enough, like amputees who report feeling sensation in missing appendages, my sinuses perceived a passage of air that did not exist, but within a week this illusion ended.

I have now had the trach for two months. It is clearly less painful than the masks I had been using, and my nose is now reverting to the size and shape of an earthling's. Tracheal suctioning takes some getting used to, but is no more stressful than the choking and assisted coughing that I had been experiencing for years using noninvasive ventilation. Nursing costs are about the same.

I have not been able to talk yet because of heavy secretions and subsequent choking but will continue to try. My biggest hurdle has been communicating my needs to an entirely new staff of nurses while trying to adjust to a sudden loss of speech. I use the Morse code function of EZ keys for typing on the computer, and this program includes a voice synthesizer.

All in all, my tracheostomy is a significant change, in some ways positive and in some ways negative, but it clearly is not the disaster that people with ALS are led to fear – from the moment of diagnosis – as the acknowledged and inevitable end point of the disease.

Steve Fowler is an accomplished flute and saxophone player, with several solo CDs on the market. His fascinating biography can be found on his website: www.emdbd.com/stevefowler.


Update: Inspiratory Muscle Training Study

Millennium Man Bill Miller (C1-2 quad) (MaxNWM@aol.com, www.lookmomnohands.net)

The setting: Gainesville, inside the University of Florida Physical Therapy building, the day of Bill’s big breathing endurance finale and the third and last of three visits for this inspiratory muscle training research project for SCI ventilator users.

How did it go? Very well. In the previous issue of IVUN News, I recounted that I breathed for three hours and fifteen minutes ventilator-free during the initial endurance test. Then, after six weeks of inspiratory muscle training, I went back to Gainesville and breathed for ... four hours and thirty-five minutes!

How did you arrive at four hours and thirty-five minutes? For the final test, I wanted to finish watching two movies. Remember that for the first test, I was told to bring a movie to watch which would not only help to pass the time, but would also create a more normal environment by taking my attention at least partially away from breathing. I had brought along two movies from which to choose. I had no idea how long I would last because I had breathed ventilator-free for three hours more than a year earlier, but not for that length of time in months. The maximum duration outlined in the research protocol was three hours, but I reached that midway through the second movie and went on for another fifteen minutes to establish a new personal record.

Bringing three movies did cross my mind, but being able to watch two movies all the way through and breathing ventilator-free for four hours and thirty-five minutes was a good indication that the inspiratory muscle training project was successful. My weightlifting buddies will understand that, on a bench press, this kind of progress in less than two months is awesome.

What's next? Although my part in the study is over, I will continue with the training exercises and prepare for the next step, whatever and whenever it may be.

Editor's Note: Danny Martin, PhD, PT, says that he is looking for more recruits from the northern Florida area for the project. Contact Dr. Martin by phone or email (325-265-0085, Dmartin@hp.ufl.edu).

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