I go to a doctor for one reason, and one reason only; their expertise. After living with a spinal cord injury for twenty years, I have gotten to know my body extremely well, and when something is awry I can tell if is serious enough where I need to see a doctor or if it is an issue that I can handle from home. Last week, I had a headache accompanied with zero appetite and nauseousness that stayed with me all day. Since I am not a person that deals with headaches on a regular basis, I was paying particular attention to my symptoms from its onset. Of course this had to happen on a Friday, as most inconvenient things do, and we were having a few family and friends over for cocktails and laughs. My headache literally started five minutes after I finalized our evening plans, and as it escalated throughout the day, I figured I would just sip water instead of wine and blame the fact that I didn’t want to partake in dinner on a big, late lunch. About fifteen minutes after our guests left that evening, I dialed 911. My headache had suddenly taken a turn so severe and I could feel my blood pressure climbing rapidly. Something important to note about people living with spinal cord injuries… A condition called “autonomic dysreflexia” comes into play that can raise someone’s blood pressure high enough to cause a stroke. Simply put, it’s my body’s way of “automatically” telling me something is significant wrong. The good thing about this condition is my blood pressure will magically go down the moment the problem causing the dysreflexia is alleviated. The bad thing about this condition is my blood pressure will continue to rise until the problem causing the dysreflexia is alleviated. My normal blood pressure is 90/60 and by the time I got to the emergency room, it was 197/104… needless to say, I was scared. In the emergency room, we checked every part of my body to find an infection or some other explanation as to why I was so dysreflexic. In my own mind, I was thinking along the lines of “what came first, the chicken or the egg? ” Did I have a terrible headache that made me dysreflexic or was I dysreflexic for another reason? (Autonomic dysreflexia comes with a headache because of the elevated blood pressure.) Finding nothing in the ER, I was admitted for observation and was scheduled to see a neurologist the following day. It was 6:30 a.m. by the time I finally got in an actual hospital room… I had been in the ER for about nine hours. My headache was no better than when I had first arrived at the ER, my blood pressure was jumping all over the place and all I wanted to do was talk to the neurologist to get a plan of care started to find out what the hell was wrong with me. When a doctor finally came in my room, claiming himself as the neurologist, I nearly wept with relief. He was very nice but had a heavy Russian accent, and a week later, I still don’t know his name. As he examined me and asked me questions about my medical history, I asked him how we control the dysreflexia until we find out what is wrong. When he asked me to repeat myself, I simply assumed he hadn’t heard me, but that was not the case. He had no idea what autonomic dysreflexia was. I stared at him in horror. I could not believe this was the individual whose hands my life was in. I explained again, hoping it was something to do with a language barrier. It was not. He thanked me for teaching him something new and I asked to see his boss. He informed me because it was a weekend, he was the only neurologist available. After 48 hours of Dr. Russia treating me for a severe migraine, receiving fluids and heavy doses of pain medicine, my headache and blood pressure finally eased. When I returned home and was able to make sleep part of the equation, I felt even better. It remains to be seen if I am now a migraine sufferer or if what I experienced was just a fluke. Dr. Russia had no idea when I asked him. I am confident the neurologist I have seen in the past at Columbia-Presbyterian in New York City, who knows what autonomic dysreflexia is, will have some answers.
Until I see my neurologist at Columbia, I feel somewhat like a ticking time bomb. What do I do if I get another headache accompanied with dysreflexia? How do I bring my blood pressure down so I do not have a stroke until I am able to get professional help? And what professional help is available to me… a hospital 20 minutes away where the neurologists don’t even know the definition of the life-threatening condition I suffer from, let alone how to treat it?! Autonomic dysreflexia may sound complicated to the laymen, but it is ABC for neurologists Universally. Currently, our country is in a great debate regarding health care. Should it be mandatory for citizens to enroll in it, should it not? Should the government be involved in it, should it not? One aspect I believe each wing would agree on is that healthcare is expensive and there is a significant amount of waste in it. If waste was eliminated, care would improve and insurance premiums would go down. I have yet to see the bill for my recent hospital visit, but after nine hours in the ER, two CAT scans, multiple x-rays, bloodwork, dozens of medications, a one to one aide in my hospital room with me around-the-clock because I cannot use a call bell due to my paralysis, topped off with a neurology consult and being an inpatient for a total of nearly forty-eight hours, I am easily looking at a bill in the tens of thousands. A portion of the payment of this bill will come out of my pocket due to recent cuts in Medicare, which is my primary insurance. New York State Medicaid is my secondary insurance, but because their reimbursement rate is so low, not many facilities accept them as payment. And I still have to go to another neurologist because the one I saw as an inpatient (which was the whole reason I was admitted and not sent home) didn’t know his ABC’s. Next time time a specialist is presented to me, I’m going to clarify this first by asking him or her to recite their ABC’s. As healthcare consumers, we all have to advocate for ourselves. Might as well cover all the bases and start at the beginning.