The challenges and importance of patient advocacy when living with a spinal cord injury (SCI)
I recently went to the emergency room (ER) located in the Department of Veterans Affairs (VA) hospital where I’ve been receiving care for more than three decades.
This was the third time in just a year that kidney stones had triggered a serious infection, and as I lay on a gurney, I wondered how much more my 60-year-old body could take. But it wasn’t just my physicality that was under duress, so was my mental state.
While my body did battle with MRSA and sepsis, my mental game was engaged in a full-court press. Sure, the docs were calling most of the shots, but I needed to be vigilant in my advocacy. After all, my most dependable advocate was picking up the kids at school, and I was headed to the operating room.
During the pre-op huddle, the team discussed the basic stuff like my vital signs and which kidney was causing the problems. And, like previous pre-op huddles, there was a focus on some of the nuances relating to my tetraplegia, such as my predisposition for autonomic dysreflexia in addition to my allergies relating to specific antibiotics such as vancomycin.
My understanding was that we covered all the important stuff and we were ready to proceed. But once we were in the operating room, clinicians were still addressing some important issues, such as how much anesthesia and which antibiotics were to be used.
Calculation of a patient’s body mass index (BMI) is a significant factor when determining the appropriate dosage of anesthesia. However, someone in the ER recorded my height as 6 inches rather than 6 feet, so when my BMI was calculated to be 3,906 rather than 26, the nurse and I shared a nervous laugh while she corrected the mistake.
When someone in the operating room asked about which antibiotic was to be used, someone responded, “vancomycin.” I quickly said, “No, I already told you that I go into autonomic dysreflexia when given vancomycin!” I don’t recall much of the conversation that followed, but I woke up on daptomycin.
I was then transferred to the direct observation unit, where I was expecting another round of educating clinicians on all things relating to spinal cord injury (SCI). However, I got lucky this time; it turns out the nurse assigned to me had worked in the SCI center just a few years ago, so the learning curve was pretty flat.
Truth be told, I hate to see a nurse leave the SCI center, but it’s comforting to know they continue their good work in other departments in the hospital where patients with SCI receive care. Furthermore, it’s VA policy for nurses assigned to the SCI center to visit patients who are admitted elsewhere in the hospital.
However, it was only after I was admitted to the SCI center that the need for vigilance became less of a concern and I could begin to relax. After all, this center was built as a place for people like me to come home to, and that’s exactly how I felt.
While it’s comforting to be surrounded by clinicians who specialize in caring for veterans with SCI, there’s still a need to ask questions and direct your care when appropriate.
For example, one of my roommates had been having a difficult time. He was probably overwhelmed with all the stuff that was happening, but when his wife arrived, she scolded him for not knowing everything that was going on with his case. She said in a very stern tone, “Why don’t you ask questions?! Now, I have to track down your doctors in the halls and ask them what’s going on. They must think I’m a crazy bitch!” That’s when my wife looked at me, raised her right eyebrow like Mr. Spock and whispered, “Now you know how I feel.”
I’m very fortunate to be married to someone who takes better care of me than I do. Gone are the days when a fever was a mere inconvenience. Nowadays, my wife wastes no time in driving me to the hospital when something doesn’t feel right.
Even when I’m admitted as an inpatient, my wife will go home at night and spend hours on the computer diligently researching my ailment du jour. This time, she “diagnosed” my kidney infection before I even went to the emergency room, and just a few months ago, after reviewing the results of my recent blood test, she told my doctor that my prescription of pregabalin was causing a noticeable decrease in my red blood cells. Obviously, I stopped taking the medication, and my red blood cell count is back to normal.
Over the 20 years we’ve been married, I’ve been hospitalized several times. When it comes to my care, she never accepts the status quo, always thinks in terms of “we” and has never been afraid to fight my battles. For a while, I thought I might be caught up in a chronic case of Munchausen syndrome by proxy, but it turns out my wife is simply a very caring, empathetic and diligent person who will stop at nothing to protect me over and over again.
Living with a SCI can get really complicated and when the stuff hits the fan, having an advocate is paramount.
As always, please share your thoughts at al@pvamag.com.
