While I served International Ventilator Users Network (IVUN) as project leader for the development of the Take Charge, Not Chances portfolio, my friend Linda Bieniek* experienced respiratory failure following surgery unrelated to her post-polio condition.
During five very difficult months of her recovery – including adjustment to a tracheostomy – in two general hospitals, one rehab hospital, and one nursing/rehab facility, I was privileged to be one of Linda's rotating friend-caregivers. Time and time again I witnessed health professionals, caregivers, and especially Linda (who was unable to speak during that time), struggle to understand and/or communicate what was needed. Had the Take Charge, Not Chances portfolio been in existence at that time I believe many very serious and frightening moments could have been avoided and recovery expedited.
One example of such a moment is that it took a skilled and caring respiratory therapist in an out-of-state hospital about a week of trial and error to figure out Linda's vent settings which Linda, heavily sedated after surgery, could not communicate. Those settings are now recorded in Linda's Patient's Vital Information for Medical Staff document. Further, in her copy of Treating Neuromuscular Patients Who Use Home Ventilation: Critical Issues, there is a directive for the hospital respiratory care practitioner to consult with the home respiratory care practitioner, whose phone number is included. And, this is just for starters.
*Coincidentally, Linda, a Certified Employee Assistance Professional, a former IVUN board member, and a twenty-year ventilator user who now continues her recovery at home, helped write the grant application which led to the Christopher & Dana Reeve Foundation's funding of this project. Her critical event occurred a month after the project began. Thank you, Linda, for your guidance and strength.
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