Ventilator-Assisted Living©
Fall 1993, Vol. 7, No. 2
(continued)
Advice for the New Ventilator User
Tedde Scharf, Tempe, Arizona
Generally, the new ventilator user has already dealt with a disabling condition and has either accepted it or is struggling with some phase of the process. The continuing process is the positive evolution of a new value system which allows the individual to accept him/herself as a capable, functioning being, despite the loss of additional physical ability.
There are three primary keys to success for us as ventilator users: creative thinking, organization, and persistence.
Creative thinking. When, as newly ventilated and perhaps trached individuals, we find ourselves lying in some hospital bed facing extreme, frightening changes in our lives, we must challenge ourselves to begin developing ways to cope with this new life situation. We must:
- Set daily goals;
- Involve ourselves intensely in the rehabilitation process;
- Start an exercise program, e.g., range of motion, passive resistance, etc., while still hospitalized;
- Take an interest in the equipment, find out how it works, what happens when it does not, how to fix it or find someone who can;
- Demand information on tracheostomy speaking valves, such as the Passy-Muir, because communication is critical to both the rehab process and life itself;
- Involve ourselves in the functional use of the ventilator with a wheelchair and other existing equipment, focusing on the adaptations that enable us to function most effectively;
- Research good nutritional habits for keeping the digestive system well-balanced despite frequent use of antibiotics for respiratory infections;
- Problem-solve for creative approaches to modifying personal care needs, reevaluating the work setting and transportation needs, resolving financial/ insurance issues, coping with social interactions, and understanding our new medical needs;
- And most important, take responsibility for our own survival. A busy mind does not have time to dwell on loss or diminished functioning. Active productivity facilitates a broader scope of values, better self-esteem, and ultimately, acceptance of the ventilator.
Organization and consistency are major factors in our successful rehabilitation and subsequent good health, as independent and productive ventilator users. Even before we are discharged, we need to establish daily schedules for personal care, trach care, and equipment maintenance, as well as meals, rest, exercise, and social activities. Supplies and workspace need to be well-organized, both at home and in the work setting. We should develop a preventive health maintenance program with our pulmonologists, respiratory therapists, and general physician. We must learn to train personal care attendants in "clean/sterile" medical procedures for trach care and auctioning. We must educate (without intimidating) coworkers and friends in the use of the suction machine and the "blue bag," how the various tubes and hoses connect to the ventilator, how the alarm sounds and why.
Persistence and motivation return us to a satisfying lifestyle. Throughout the critical care stage, we can set small daily goals for ourselves and expect results. This exercise teaches us persistence and motivates us to take responsibility for our own survival, goal-setting, and meaningful existence. We will discover the primary motivators in our lives and focus on pursuing them, without letting a trach or a ventilator interfere. We can read about successful individuals who use ventilators, and seek to meet positive role models. We should request referral to the State Rehabilitation Services or Vocational Rehabilitation for job site modification and/or retraining. If we are non-Rehab clients, we can get some assistance through the State Rehabilitation Services SIL office for home modifications and assistance with independent living. We must use all the information we can gather to rebuild our lives. We must learn to be our own best advocates, and be assertive in our dealings with agencies, services, and other bureaucracies.
Today, the doors to unlimited opportunities have opened through the development of modern advances in medications, portable ventilators, suction machines, exsufflation machines for coughing, new applications for noninvasive ventilation, speaking valves, accessible public/private buildings and transportation, access to jobs, and increasing public awareness of the abilities and rights of persons with disabilities. It is essential that medical professionals and families recognize the potential of persons who are ventilator users and support the development of a fully functioning independent existence. But it is even more important that we, as ventilator users, recognize our own potential to organize new lifestyles. We make the choices for success and acceptance.
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