Card that Explains Autonomic Dysreflexia (AD) Could Save Your Life
By: Bernadette, Director, Information and Resource Services
A number of years ago I went to sit on a cement step and lost my balance and fell. Unable to catch myself, my left wrist and forearm took the brunt of the fall. Within minutes the wrist and arm swelled and became very blue. My family got me in the car and we headed to the local ER which is also a level 2 Trauma Center. I was taken into Triage immediately for evaluation and medical history. When the nurse took my blood pressure it was 215/110.
I knew that it was autonomic dysreflexia (AD) and pulled out an AD card. The nurse glanced at it, handed it back and asked, "Why didn't you tell me you had high blood pressure? Can someone go home and get your medication?" I continued to try to explain AD, asked her to call my physiatrist and explained that my head felt as if it was going to explode. The triage nurse took a few more notes and proceeded to ask me to sit in the lobby all the while ignoring my explanation of AD.
I tried to reach my physician during the 90 minutes that I sat in the waiting room but it was well after 6:00 pm and the hospital switchboard was shut down. My face was flushed, my head pounding and my heart continued to race. I eventually got the triage nurse to give me ice but nothing more. I was so frustrated because I thought the AD card would get her attention -- NOT.
After much pushing and nagging I was taken to the back exam rooms. The ER nurse took my blood pressure and was quite concerned. When I said "autonomic dysreflexia and my head is ready to explode," she immediately went and got a physician. The doctor was aware of AD but wanted me to direct my care. Suddenly my understanding and knowledge of AD became very important. Pain management occurred simultaneously with treatment to reduce my blood pressure.
Nitro paste, pain medication, ice and frequent blood pressures became the treatment. My arm was not broken but I had smashed the nerve that runs through my wrist and controls sensation in my hand. I was immobilized in a 1/2 cast to help reduce the pain. After several hours my blood pressure was down to 174/98 -- still in the AD range but continuing to drop.
I was discharged home with orders to follow up with my physiatrist. When I saw her, we discussed at length about AD and the frustration of not being able to get triage to grasp the issue. We were both grateful that the ER doctor and nurse listened, had some awareness of AD and were open to suggestions on how to manage the AD. Together we pondered a better way to get immediate attention for the AD.
My personal experience is in part the reason for the design of Reeve Foundation's new AD cards.
In collaboration with the nursing and medical staff at International Center for Spinal Cord Injury at Kennedy Krieger Institute we designed an AD card for both the patient and the physician. The cards are designed to fit in a wallet with your bills. It is a tri-fold that will allow you to write all your baseline blood pressure, level of injury, emergency numbers, etc.
One of the folds is written specifically for the physician. In the event of an AD crisis, you can pull the "Attention Physician" flap to the front. This allows first responders to see your personal information on one side and directions to treat AD on the other. Your baseline blood pressure determines what your AD numbers are and helps identify the best treatment for you. Most quads have low blood pressure but few emergency room doctors and rescue squads realize this fact. Learn your baseline blood pressure if you don't know it already.
The new AD cards are available for both adults and children/ teens (their treatment and numbers differ). The inside of the card is a quick reference for the individual with paralysis/spinal cord injury (SCI) and/or their caregivers. Please fill in your important information -- the Reeve Foundation suggests using a fine point sharpie, but a regular pen also works if you press firmly. Copies of the AD card are available online for download, or you can get your laminated copy by calling the Paralysis Resource Center at 800-539-7309 and asking to speak to an information specialist.
AD is a common secondary condition for individuals with T-6 injury or above. Knowing and understanding AD can save your life. Left untreated it can result in seizures, stroke and even death.
The information contained in this card is presented for the purpose of informing you about paralysis and its effects. Nothing contained herein is to be construed or intended as a medical diagnosis or treatment. Contact your physician or other qualified health care provider should you have questions on your health, treatment, or diagnosis.
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AHRQ's National Guidelines ClearinghousePresents their guidelines, Acute Management of Autonomic Dysreflexia: Individuals with Spinal Cord Injury to Health-Care Facilities.
Consortium for Spinal Cord Medicine: Autonomic DysreflexiaThis consumer guide explains in clear language the most common warning signs of autonomic dysreflexia and what steps to follow if you think you are experiencing an episode of this life-threatening condition. All information has been prepared by a committee of qualified professionals based on scientific and professional knowledge about autonomic dysreflexia, its causes and treatments. Published by PVA on behalf of the Consortium for Spinal Cord Medicine.
EmedicineTitle: Autonomic Dysreflexia in Spinal Cord Injury
Spinal Cord Injury Information NetworkFeatures articles and references for AD and all other SCI conditions.
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Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.
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