Ventilator-Assisted Living©

Summer 2005, Vol. 19, No. 2

(continued)

Home Is Best

Liz Martin, Port of Monteith, Scotland (martin_liz@tiscali.co.uk)

My 40th birthday was a prolonged celebration lasting a week. Unbeknownst to me it was to be the last I spent as a nondisabled person. My life as a riding instructor and controller in the fire brigade ended in February 1991, when a lorry driving down a hill too fast collided with my stationary car and catapulted me into an electric junction box and a tree.

Not only did I have to come to terms with a complete C3/4 spinal cord lesion but also with facing a future totally dependent on other people. All aspects of my needs required in-put from someone else. I received a “mini-trachy” for suctioning only, not for ventilation.

As I looked out of the hospital window, I believed that when I escaped home, the problems would settle down. I concentrated my mind on survival.

My specialist care began in the neuro-surgical unit in Glasgow. Then I was transferred to the rehabilitation unit, and finally to a housing complex for people with physical disabilities nearer my home.

My sister and brother-in-law came from Holland and supported me in a successful civil litigation. This enabled me to commission an accessible, disability-friendly house of my choice – in a field – in the Trossachs National Park, north of Glasgow near Stirling.

Six years passed from the time of my accident until I moved into my new home. After only three weeks there, I developed a chest infection and was readmitted to hospital. Although I quickly recovered and felt well enough to return home, the local community health services felt unable to take responsibility for my safe care now that I needed to use a ventilator with my trach. (I do receive nursing support for my daily routine.) Again my sister and brother-in-law came from Holland to rescue me, and we formed my own care team. Since returning home I have had only one brief hospital admission to adjust medication for pain control.

My care staff of six works singly with overlap at changeover, either 12-hour shifts or sometimes they share shifts. I recruit them locally, train them in my home, and pay them from the proceeds of my legal settlement. My daily routine is simple and followed diligently.

The maintenance of and training in the use of my medical equipment is from the clinical physics department of the Southern General Hospital in Glasgow. They introduced me to the Dragon Dictate Mark 7 for my voice-activated computer.

My ventilatory equipment is multi-national in origin: two Swedish BREAS PV 501 volume ventilators – one at my bedside and one under my wheelchair; Nonin pulse oximeter (USA); Norwegian laerdal suction and resuscitator; and a Fisher & Paykel humidifier (New Zealand). I use an uncuffed Tracoe tube (USA) and Swedish Spiro speaking valve. The only Scottish component is me!

Currently, I use the ventilator overnight and during the day only when confined to bed with a chest infection, but I’ve only had three of those in 6½ years.

It probably took me about 18 months from the time I returned home before I felt confident that I would remain there. Thereafter, I began to “belong” to the community.

Liz boarding the train for Lyon.The UK does not have a Spinal Cord Injury National Database, and being one of the few people with a spinal cord injury using a ventilator at home in Scotland is a bit lonely. Last January one of the UK daily papers ran a Eurostar/SNCF (French railway) promotion with a first class “disabled” roundtrip fare to Lyon, France, for £50.

That prompted me to submit a poster to the Tenth International JIVD Congress on Home Mechanical Ventilation. I reserved wheelchair space on the trains, but my journey did not necessitate any other special arrangements, apart from the need for careful and clear communications. Five of my caregiving team accompanied me. The ramp system for traveling on SNCF and trolley buses in Lyon are excellent.

The Lyon congress was an exciting opportunity to meet other ventilator users – with similar needs and aims – in Europe.

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