Card that Explains Sepsis Could Save Your Life
By Bernadette, Director, Information and Resource Services
This past year, just after the holidays, I felt really rundown. I was sleeping a lot, running a fever, and I thought maybe I had the flu. It's a busy season, so it didn't surprise me that I was feeling sick. I just shrugged it off, got as much rest as I could, and figured I would start to feel better before too long.
Then, a few days after I had begun experiencing all of those symptoms, I noticed that there was blood in my urine. It was a Saturday night, so the next morning I went to urgent care, where I learned that the early stages of sepsis were beginning to set in. I was lucky -- the doctor gave me intravenous and oral antibiotics, which eventually worked to clear up the infection.
But many others living with paralysis who experience sepsis aren't so lucky. In 2013, I heard of the death of four friends within a period of several months due to this insidious killer. One of the four died in his sleep despite already being on antibiotics, as the bacteria became resistant to the drug he was currently taking. This sad story highlights a critical fact: People with paralysis take so many antibiotics that they can easily become resistant to various strains.
Am I writing this to scare you? Yes and no. Sepsis arises when the body's response to an infection injures its own tissues and organs, and can lead to shock, multiple organ failure, and even death if not recognized early and treated promptly. In individuals with paralysis/spinal cord injury (SCI), an infection might begin as a urinary tract (bladder) infection, pneumonia, or as a wound, pressure ulcer or any other infection. And sepsis comes on so quickly that it is the leading cause of death by infection.
Those of us who are living with paralysis in particular need to understand that we are prone to infections that can develop into sepsis when gone untreated. Since many of us don't feel any pain during these kinds of infections, the possibility that they advance to the point where bacteria gets into the blood is all too real. Once this happens, our lives can be in serious danger.
But the good news is, if you know the signs, and are quick to contact your physician when they set in, sepsis is treatable. The realities of sepsis, though, offer a clear reminder that if you're not feeling right, it's imperative that you seek out a doctor. My friend's husband, who died of sepsis unexpectedly while on antibiotics, held off going to the doctor in order to give the antibiotic time to do its work. This cost him his life. Meet with your physician and discuss a plan for getting in touch with him or her when you're not feeling right.
In order to help you be as aware as possible about sepsis, and to help your doctor to understand your susceptibility to the condition, the Reeve Foundation Paralysis Resource Center (PRC) has developed a way to draw immediate attention to sepsis, should they need the information in an urgent manner.
Thanks to the collaboration of Linda Schultz, PhD, assistant professor of nursing at Maryville University, and the medical staff at Kennedy Krieger Institute, we have designed a sepsis card for both the patient and the physician. The cards are designed to fit in a wallet with your bills. It's a tri-fold that will allow you to record your level of injury and emergency numbers, among other important information.
One of the folds is written specifically for the physician. In the event of a sepsis 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 sepsis on the other.
The sepsis card applies to both adults and children. 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 Sepsis 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.
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.
Available to download: Over 100 PDF fact sheets organized alphabetically on various topics from Aging with SCI to Wish Granting Agencies.
Also contains disability resources for each of the 50 United States and 31 countries (where possible the country fact sheets are in the native language of that country).
Paralysis Resource Guide
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Arkansas Spinal Cord CommissionThe mission of the Arkansas Spinal Cord Commission is to administer a statewide program to identify and meet the unique and lifelong needs of people with spinal cord disabilities in the state.
CareCure CommunityCareCure Community features a SpinalNurse bulletin board with informed comments on matters of the bowel, and all issues of paralysis.
Canadian & American Spinal Research OrganizationPromotes and supports funding research to ultimately find a cure for paralysis. Also publishes journal of latest research they fund. Call (800) 361-4004 or use the link above.
Canadian Paraplegic AssociationAssists people with spinal cord injuries and other disabilities to achieve individuality, self-reliance and full community participation. Call (613) 723-1033 or use the link above.
Craig HospitalWith funding from the US Department of Education's National Institute on Disability & Rehabilitation Research, has developed educational materials to help people with spinal cord injuries live in the community maintain their health. Topics include skin care, exercise, heart disease, weight control, alcohol abuse and conditions related to the aging body. Use the link above and click on SCI Health and Wellness.
Determined 2 HealProvides helpful information for the newly spinal cord injured.
FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.
Kosair Charities Center for Pediatric NeuroRecovery at the University of LouisvilleThe Kosair Charities Center for Pediatric NeuroRecovery provides activity-based therapies to promote recovery from neurologic injury in children; conducts research to enhance recovery; and trains families, practitioners and scientists to maximize recovery and improve the quality of life for children and their families. In short, we are here to help kids kick paralysis and through science have every reason to hope.
Model Systems CentersA federally funded program of 14 specialty medical and/or rehabilitation centers across the US. The SCI Care System collects and submits acute, rehabilitation and follow-up (annual, long-term post-discharge) data on SCI patients who received care in the these centers following injury.
The Miami Project to Cure ParalysisThe Miami Project to Cure Paralysis has studied functional electrical systems for exercise.
The National Spinal Cord Injury Statistical Center (NSCISC)NSCISC supervises and directs the collection, management and analysis of the world's largest spinal cord injury database. Headquartered at the University of Alabama, Birmingham.
National Spinal Cord Injury Association (NSCIA)At NSCIA, we educate and empower survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfillment. We fulfill this mission by providing an innovative Peer Support Network and by raising awareness about spinal cord injury and disease through education.
New York Online Access to Health (N.O.A.H)Offers information and links related to spinal cord and head injury treatment, rehabilitation, and children. Materials in Spanish.
Neuroscience for KidsOffers an understandable look at the segments of the spinal cord; from University of Washington.
Paralyzed Veterans of America, in support of The Consortium for Spinal Cord Medicine, offers authoritative clinical practice guidelines for bladder management. Consumer guides are available to download.
SpineUniverseAt SpineUniverse our goal is to help patients and their families understand their back or neck problems. In clear, straightforward language we aim to explain what causes spinal problems and how they can be treated. We are committed to ensure that all of the information we present is trustworthy and of the highest quality.
Spinal Cord Injury Information NetworkThe Spinal Cord Injury Information Center features clinical information about bowel management and all other medical issues of paralysis.
United Spinal AssociationOur mission is to improve the quality of life of all Americans living with spinal cord injuries and disorders (SCI/D), including multiple sclerosis, spina bifida, Lou Gehrig’s Disease (ALS), and post polio.
U.S. Department of Veterans Affairs Fact Sheet: VA and Spinal Cord InjuryOf the more than 250,000 Americans with serious spinal cord injuries and disorders, about 42,000 are veterans eligible for medical care and other benefits from the Department of Veterans Affairs (VA).
Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.
Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.
Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.
Library Books and VideosFind resources within the PRC library catalog.
This FREE 442 page book is a comprehensive information tool for individuals living with paralysis and for their caregivers. Request or download your copy now!
Check out programs in your area on our one-of-a kind online searchable Quality of Life program database. You can search by location or topic. GO