Ventilator-Assisted Living©

Fall 2004, Vol. 18, No. 3

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Many ventilator users travel by air and use their ventilators in flight. Some may also need to use supplemental oxygen during the flight. It takes advance planning and critical attention to detail, but it can be done. Here are some recent travel experiences that include valuable tips to ensure a successful journey.

Ventilator Users in the Air: Traveling to Japan

Adolf Ratzka and Audrey King, two long-term ventilator users, traveled to Japan in late June to participate in symposia sponsored by the Japanese Ventilator Users Network (JVUN). Adolf, head of the Independent Living Institute, traveled from Stockholm, Sweden, to Japan. Audrey, a disability rights activist and author, flew from Toronto, Canada, to Japan.

Which airline(s) did you fly?

Adolf Ratzka: Finnair and All Nippon Airway.

Photo of Audrey KingAudrey King: Air Canada and All Nippon Airway.

How many hours was each leg of the trip? (not including check-in time, waiting for connecting flights, baggage, customs, etc.)

AR: 1 hour from Stockholm to Helsinki; 9½ hours from Helsinki to Osaka, 2 hours from Osaka to Sapporo.

AK: 4½ hours from Toronto to Vancouver; 12 hours from Vancouver to Osaka, 2 hours from Osaka to Sapporo (altogether 39 hours over 1½ days – three different airplanes; four different airports).

Which ventilator(s) did you take?

AR: Eole 3 volume ventilator (Saime, France)

AK: In flight, I used the LTV®950 (Pulmonetic Systems, Inc., USA). On the ground, I used the LTV®950 in volume mode during the day when travelling, conveniently hanging on the back of my wheelchair. The PLV®-100 (Respironics Inc. USA), which is my usual ventilator, was provided for night use.

Were you able to plug directly into the airline's electrical system? If so, whom did you contact at the airlines?

AR: Finnair has a seat with a plug for their internal power supply but I did not inform them about my need of a ventilator.

AK: No and no. I asked different people at the Air Canada medical desk many times.

If you didn't plug in, what kind and brand of battery did you use?

AR: External 12V, 18 Ah standard battery.

AK: Four external LTV® Universal Power Supply batteries from Pulmonetic Systems, Inc. (Each lasts about 3½ hours.)

Did you use supplemental oxygen in flight?

AR: No, I have never tried it.

AK: Yes, I used a low flow via the LTV®950 (for the first time as a prophylactic measure because of the length of time in flight). The humidity provided was definitely an asset. I did not become sick or catch a cold as I have on previous flights.

Did the airline's transfer chair get you onto the plane and into your seat satisfactorily? Did your own wheelchair arrive in good condition?

Photo of Adolf RatzkaAR: I travel by air about five to ten times a year and have developed my equipment accordingly. To better manage transfers between wheelchair, aisle chair, and seat, I designed a carrying cloth that I sit on with my ROHO cushion. The one-piece cloth is made of tough sailing material by a local sailmaker and extends from my knees up to the shoulder blades. It has two sets of carrying handles: one at my knees and one on my back up by the shoulders, with three Velcro straps across the front to secure me. This facilitates the job for the airline staff and makes transfers a breeze for me. My wheelchair arrived undamaged.

AK: For transfers, I also use a similar sling made of canvas by a sailmaker. It has loop handles at the back and at the knees, and a strap across my knees and chest so I won't slip off. I travel with a low-tech lightweight power chair that is small and easy to dismantle and reassemble. My attendant is responsible for packing it for the luggage hold and for reassembling it upon arrival. It was not damaged.

How long did you use the ventilator on each leg of the trip?

AR: All the time except when on the aisle chair when I breathed normally.

AK: I used the ventilator about two hours on the flight from Toronto to Vancouver, but not with oxygen. On the trans-Pacific flights, I used the ventilator with oxygen for about eight hours, off and on, with a mouthpiece. I am able to breathe on my own for about six to eight hours before getting too tired. I slept lightly with a nasal mask for about two hours, behind a blanket for privacy.

Who/what ventilator dealer or home care company in Japan helped with preparation, backup, repairs, emergencies, etc.?

AR: I travel with two ventilators that I make sure are in good condition for the trip, but only bring one ventilator on-board. In case it should fail, I have an emergency "ventilator" in my carry-on case. It is not an Ambu® resuscitator bag (too expensive, too bulky when not in use, too cumbersome to use), but an ordinary foot air pump, carried in my backpack, similar to those used for inflating air mattresses. In an emergency I can connect my regular hose to the air pump, and my assistant can sit beside me using one foot at a time to pump air into the hose.

AK: Respironics in the US and Canada, and Fuji Respironics in Japan were great help in coordinating and providing backup units at all locations in Japan. They even helped with dead wheelchair batteries and found two connectors for which I have been searching.

Many thanks to Monica Reid, Derek Glinsman and Danny Reisberg at Respironics. Special thanks to Angela King of Pulmonetic Systems, Inc. for her extra help with the LTV®950.

Additional Comments

Adolf Ratzka: Most important for me is a good and experienced assistant whom I have trained and worked with for some time before the trip.

I never inform the airline or travel agency of my need to use a ventilator during the flight. That would raise a number of concerns, discussions and possible negative answers. Instead, I inform them of my needs for carry-on service and for my electric wheelchair I have a medical statement that certifies that I am in excellent health and need to use a ventilator. This statement I would use only when nothing else helps. Because I am wheeled onboard in the aisle chair without my ventilator, the plane crew is not aware of my ventilation need. The ventilator and its external battery are carried in an unobtrusive bag. As the rest of the passengers embark and command the cabin crew's attention, I hook up the hose (an elegant 8 mm translucent hose - no ICU-looking circuit) without a mouthpiece. The only question I might get asked by the crew, when the plane is in the air and they discover the hose in my mouth, is whether it is oxygen. Over the years I have traveled to most continents and my policy of never mentioning the ventilator beforehand nor asking for special treatment because of my ventilator has worked out fine.

Audrey King: Knowing your attendant well is absolutely crucial because there is more stress, unpredictability and fatigue when you travel. Also you are more physically dependent when you are out of your familiar environment that has been set up especially for you. I cannot over-emphasize the importance of research and planning. You must know how your equipment works and how to reassemble or readjust it if settings get altered (basic troubleshooting). This includes packing basic fix-it-yourself tools such as tape and scissors and back-up bits and pieces.

You also need to locate resources at your destination. I always carry a doctor's letter, but only produce it when and if challenged. The right blend of gratitude, respect and appreciation for those who truly help you along the way (and there are many such folks) is essential, as well as strong assertiveness when you absolutely must have things provided in the way they need to be provided.

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