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Ventilator-Assisted Living^©

Winter 2004, Vol. 18, No. 4

ISSN 1066-534X

Ventilator-Assisted Living is available with Membership.

Published quarterly in March, June, September and December.
Edited by Joan L. Headley (director@post-polio.org).

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Read selected articles from this issue ...

The Ventilator Boat: Will It Float?
Eric S. Obermann, Huntsville, Alabama

My Dream: Scuba Diving!
Matt Johnston, Woodbury, Minnesota

PHI Grant Awarded to Johns Hopkins Team to Study Early Use of Noninvasive Ventilation

The Pneumobelt: Part of My Noninvasive Ventilation System
Tedde Scharf, MA, Tempe, Arizona

Planning for Elective Surgery
Louie Boitano, MS, RRT, Northwest Assistive Breathing Center, Pulmonary Clinic, University of Washington, Seattle

Home Care for Children in Holland: The Story of Anouk
Trudi Taat-Krakeel, Home Ventilator Nurse, Sophia Children's Hospital, Rotterdam, The Netherlands

Potpourri: John J. Downes, MD, FCCP; Over 5 Years Club; Virginia Nelson, MD; CILB (Citizens for Independence in Living and Breathing); Paul Longmore, PhD

Strategies for Living Well: Ninth International Conference on Post-Polio Health and Ventilator-Assisted Living

New Interfaces: Nasal Pillows

New Equipment

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The Ventilator Boat: Will It Float?

Eric S. Obermann, Huntsville, Alabama

I was only 18 when the first symptoms appeared. I noticed that my tongue was getting harder to move. The next thing I detected was air leaking from my nose while playing my clarinet. Before I knew it, I was off at college and having a great time. Then I vomited and aspirated. I did not know it then, but I had just given myself my first case of pneumonia.

I was barely able to drive home (four hours) from college with this pneumonia. Two weeks later, we drove to Saint Louis to see a neuromuscular specialist. I was not feeling well, and by the time I saw the doctor, I was in respiratory distress and was admitted directly to the neurological ICU where I was intubated for my first vent experience. Even though I now had a trach with a cuff, I continued to get recurring bouts of pneumonia. I then decided to undergo a laryngectomy in order to prevent any possibility of aspiration.

I remember that after this procedure the hospital nurse told me that I could never take another shower ever again, and I became very depressed. Fortunately for me I have very determined parents who figured out how I can shower with my vent: I wrap a hair stylist's water-resistant apron around my neck.

Last summer we went on a family vacation to North Carolina, and we had a private pool. I decided that I wanted to take a dip and asked my uncles to lower me into the pool in my shower chair while keeping my neckline above the water. When I first hit the water I became alive! It is an amazing feeling to be immersed in water when you haven't been for over two years. One of the big benefits of being in the water is that I can move my limbs, which I normally can't on land. It also refreshes my sore back after days in a wheelchair.

I am now a quadriplegic at age 23. The specialists think I have a progressive ALS-like motor neuron disease but are still hesitant to label it ALS. I wear a cervical neck brace at all times because I have no muscle control in my neck. I use the LTV^® 900 (Pulmonetic Systems, Inc.,) ventilator with volume control 24 hours/day. My pulmonologist, Daniel Goodenberger, MD, Washington University in Saint Louis, suggested the LTV for traveling – an Alaskan cruise – and swimming. The LTV's laptop size and light weight give it the portability for travel and for activities like aquatic therapy.

To swim, I sit in a wheelchair, and my physical therapist lowers me into the water via a swimming pool ramp. Then I float out of the chair. She supports my neck above the water and uses two 'noodle' Styrofoam floats behind my neck brace to keep the trach dry. I inflate the trach cuff a few extra cc prior to the swim. Originally, we set the ventilator next to the pool but now use a plastic 9-gallon container to hold the ventilator and battery. This floats beside me while someone supports the tubing and assures that the "vent boat" floats. I can then swim and move about the entire pool and even do weight-bearing walking; in the gravity world, I can't even budge. Swimming with my ventilator boat – I look forward to it every week.

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