Ventilator-Assisted Living©

Fall 1997, Vol. 11, No. 2

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Forum on Home Mechanical Ventilation:

The Japanese Experience
Kimiyo Sato, Japanese Ventilator Users Network (JVUN), Japan, www.jvun.org

I was born in 1962 and I am now 34 years old. The name of the disease which caused my disability is Kugelberg Welander disease (spinal muscular atrophy Type III). I use trach positive pressure ventilator 24 hours a day. I move around on a gurney.

Twenty-two years ago, when I started to use a ventilator, there was no portable ventilator in Japan yet; what we had was a ventilator about the size of a refrigerator. Therefore I had no choice but to stay in bed all day. At that time, I was told by a doctor that I could only survive in a ward of the hospital all my life. I had no hope in my future.

While living in a hospital bound by rules just like a prison, I always had a yearning for freedom. I never abandoned my dream to live in the outside world. One day I was handed a brochure and learned about a portable ventilator for the first time. In the brochure, I saw a picture of a disabled person moving around with the ventilator mounted in the back of his wheelchair; that picture gave me a big courage.

When I was 27, I got out of the hospital and started to live on my own. Having no institutionalized assistance from society, it was not as easy as I had imagined to live on my own, but the freedom that I gained was very precious and irreplaceable by anything else. The road to actualizing my dream was very harsh. There was no information at all around me about people living at home using a ventilator, and the medical specialists kept telling me that it was dangerous to take ventilators out of the hospital. It took a long time to convince them otherwise.

After I started to live on my own, I established Japan Ventilator Users Network (JVUN). I had no friends who used ventilators then; I needed a network where ventilator users could share their feelings, problems, information, and other experiences. Regretfully there is no governmental financial support for JVUN, but 800 people support our organization. About 100 out of the 800 are ventilator users. JVUN publishes a newsletter called Another Voice.

Currently, it is estimated that there are about 8,000 ventilator users in Japan, but those living at home constitute less then one percent of this figure. Most ventilator users are still confined to hospitals. The primary reason is that most of the medical specialists think of a ventilator as life support equipment.

People with disabilities have been told that having a severe disability and living with a ventilator is worthless. But for us, the parties concerned, a ventilator is just like a wheelchair or a pair of crutches, a tracheal tube like pierced jewelry. We have been tenaciously insisting that ventilators are merely tools to support our independence.

In 1992, the movement of ventilator users and their families bore fruit; national medical insurance started to cover home ventilation therapy. Ventilators were able to be rented free of charge in 1994. (The government pays the hospitals the cost of the ventilator equipment.) Until then a ventilator user had to purchase a ventilator which costs as much as 3 million yen (approximately $25,000 USD).

However, we can only rent one ventilator, and if we need two ventilators in case one fails, we must purchase the backup ventilator. We receive an allowance of about $400 per month from the central and local government to pay for maintenance and some supplies. Attendant care assistance for ventilator users is not guaranteed by the government, and the reality is that in-home care is supported by the devoted efforts of family members.

Tracheal suction care cannot be legally performed except by medical doctors and nurses; home helpers are not allowed to perform any home medical care, even if it is applying skin lotion. Visiting nurses come about one to three times a week for two hours per visit, which hardly guarantees medical care needed 24 hours a day. School teachers also cannot suction. Consequently, the radius of action of many ventilator users is very limited.

I think suction care can be performed by anyone who has received basic training. I know it very well because I perform suction on myself. Suction care is everyday care, just like eating and changing the body position, and attendants and family members can be easily trained to do it.

Even with these problems, home ventilator users are increasing. We are especially proud of the children with Werdnig-Hoffmann's disease who use a ventilator and attend regular elementary school, studying together with nondisabled children. We ventilator users are messengers who can tell the world about the brightness and wonderfulness of human lives.

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