Monday, August 24, 2015

Minimally conscious...and it wasn't even morning

This photo was taken at All Saints Healthcare on the day the evaluation I refer to was written.

On Friday I went on an exhausting and frustrating wild goose chase through the sprawling Kaiser Permanente Panorama City Hospital campus in an attempt to request my hospital records. The complex has undergone extensive building and reorganizing, so I kept being routed to the wrong buildings. My mother figured out that I had been to all but one of them. This was complicated by my previous odyssey to obtain my hospital and nursing home records. Then, too, I was redirected repeatedly and incorrectly. When I was sent to the place where I eventually wound up requesting the records, I headed right out again because it was the same office where I had been misdirected the first time. That was eight months ago, however, and now it was the correct location. After I finally found the right office that time, I had to wait a few days to receive the records on a DVD. When I picked them up, at a cost of $15, I didn't check them right away because I only needed them for when was ready to started writing my memoir.

Eventually, I promised to send a copy to Dr. Adrian Owen to help him understand my case. As I previously mentioned, I'm going to be helping him by answering some questions about my covert cognition experience as he writes a book for the popular market. Unfortunately, when I fed the DVD into my computer, I found that I had been given the records from my 2014 Legionnaires' disease hospitalization. I don't think the fact that they were both legionella cases had anything to do with it, as rare as this bacterial infection may be. She just gave me the records from the second hospitalization in 2013, when I returned to the hospital from All Saints Healthcare, the nursing home Kaiser had transferred me to only six days before. I was back at the hospital to stop the bleeding from my gastric tube. She had also included the records from my 2014 hospitalization sequel, Legionnaires' Disease: The Revenge. Thus, the literal run-around...again. Now I'm going to have to pay that $15 fee again. Yeah, that's not fair, but it's not worth arguing about. I need those records!

The other odd thing is that the records were missing two days from my short stay at All Saints. I'm missing the day before I awoke and the day of my awakening. The first missing day is exactly two years ago today. Tomorrow is the the second anniversary of Coma Day--the day of my awakening. That's gone too.

Yup, the two most important days are missing. I'm awaiting a callback from All Saints to see if they have the records. But reviewing the records I do have gave me a bit of shock. It says that I was opening my eyes and responding to simple commands five days before Coma Day. That means that I was at that point in a minimally conscious state. That's not the surprising part; I suspected as much. However, my loved ones would've liked to have known that the doctors were now saying that my altered mental status was improving. They could see that for themselves, but until then my doctors had always pooh-poohed their observations of my increasing awareness. Indeed, the doctor who wrote these notes told Keith that I wasn't the same patient described in my medical records. In her notes, she deemed my rehab potential to be fair. That's a whole lot better than the previous predictions that I would at best be left a hopeless vegetable. This change in evaluation is due to the fact that people in minimally conscious states are far more likely to effect a full recovery. You know, like I have. I wish my loved ones had known that!

What other surprises await in the records from those two days?

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Coma Girl

Coma Girl

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In July of 2013, I fell into a six-week coma and nearly died. When I awoke from the coma, I could barely lift my head. It has been a hard road to recovery. The doctors advised my loved ones to give up all hope for my full recovery, but while they were shining lights in my eyes to gauge my level of consciousness, I was telling them grumpily to leave me alone because I was trying to get back to sleep...in my coma-dream. I was experiencing covert cognition, and the coma-dream was my version of a near-death experience. I'm a skeptic, so I saw surreal images instead of spirits or dead loved ones. According to my research, as many as one in five people with consciousness disorders have covert cognition.

Not a miracle recovery, but a miracle of modern medicine

In 2013 I fell into a six-week coma and nearly died after I contracted legionella. The Legionnaire's disease was in turn triggered by immunosuppression caused by the prednisone I was taking for my rare autoimmune disease, dermatomyositis.

I suffered a series of strokes on both sides of my brain when the sepsis caused my blood pressure to plummet. I fell into a deep coma. My kidneys and lungs began to fail, as my body was began dying one organ at a time. My doctors told my loved ones to give up hope for my full recovery. They expected me to die, and even if I somehow lived, I would remain a vegetable or at best left so hopelessly brain-damaged that I would never be same. But unbeknownst to them, while they were shining lights in my eyes and shaking their heads, I was telling them in my coma-dream--my secular version of a near-death experience--to leave me alone because I was trying to get back to sleep. I was experiencing what is known as covert cognition, the subject of my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," which appeared in their July/August issue.

But it wasn't a miracle--despite what so many continue to believe--that I recovered so fully. I owe my life not to God, but the miracles of modern medicine, as well as the nature of the watershed-area brain damage I suffered, as I detailed in my article and in this blog.