Complications

D-Day (discharge day) had arrived! My husband wanted to celebrate by taking me out to a restaurant in a very nice part of town. As we walked to the restaurant from the parking lot, I quickly realized that I had to think very carefully about my movements. I felt very uneasy and full of anxiety being in the restaurant with other people. I ordered a salad for lunch, but it felt very unnatural to eat it. I had been told living on prednisone was going to feel a lot different than my own natural cortisol, and now I understood why.

Being home didn’t give me the feeling of joy I expected. I was very irritable and paranoid, with butterflies in my stomach, and bugs crawling under my skin. I didn’t want to be alone, and I didn’t want to be with my family. I didn’t know what I wanted, but I did know that I was horribly uncomfortable.

By the second night home, things started to change. I had felt agitated sitting upstairs with the family noise and the TV on, so went to sit downstairs alone in the dark. A feeling of sleepiness came over me as I sat back in the recliner. The movement back in the recliner sent me into a sheer panic. I tried it again, and the feeling came back. I could not lie down. A scary feeling of disorientation started to come over me. With a lot of difficulty, I climbed the stairs to tell my husband about what was happening to me. When I finally reached him, my tongue felt thick and talking was difficult. I felt like I was slipping away. I knew what I wanted to say, but it wasn’t easy to tell him. I was extremely thirsty. Under his direction, I called my doctor’s office, and was told by the doctor on call to go to an emergency room.

On the way to the hospital, my vision was blurry, the lights all had halos around them, and I saw things in the road that weren’t there. The little rural hospital where I had worked as an EMT was a far cry from the neurological hospital I had just been released from the day before, but it was close by and my husband knew something really bad was going on. I had worked with the ER triage nurse, and although I couldn’t articulate what was happening, she knew I had just had brain surgery and got me help right away. A blood test would show my sodium level to be 113 – normal is 135. I had what was called hyponatremia, a dangerous metabolic disorder caused by a decrease in sodium in the water outside the cells. When sodium drops, water will seep into the cells to balance the water-to-salt level. The excess water causes the cells to swell. While most cells in the body can handle the swelling, the brain cells can’t because the skull restricts them. The swelling brain cells are what caused the altered mental status I was experiencing.

Before the blood test results were known, however, certain co-workers would have their own opinions about what was going on with me. A paramedic would be heard saying, “Wow, she sure is loaded,” meaning I had been taking drugs, or was very drunk. I may have appeared to be borderline unconscious, but I could hear every word being said about me. So the talking-about-patients-as-if-they-can’t-hear problem seemed to be widespread. (I would later get the satisfaction of belittling him for this)

The worst part of the ER experience was the doctor’s insistence that I have a CAT scan to rule out bleeding of the brain. She refused to hear my slurred explanation that this was probably caused by my brain surgery – from a previous endocrine disorder called Cushing’s. And then I saw the glazed look in her eyes – a look that would become all too familiar to me in the years to come. The CAT scan was ordered.

The poor CAT scan technician tried to get me to lie down on the table, but I couldn’t. IT FELT LIKE MY BRAIN WAS EXPLODING! I felt so bad for him, because he really wanted to do his job – but it wasn’t going to happen. He actually got angry and brought me back to the ER, complaining that I was “noncompliant.” Whether or not the ER doctor had already seen my blood tests I wasn’t sure, but had she known what the signs and symptoms of a sodium imbalance were, she never would have ordered the scan.

She finally came in announcing that I was being admitted to the hospital and would have to stay until my sodium level was restored to normal. I had let my husband go home since he had to work the next morning. Just before I started being wheeled upstairs, I heard my doctor say, “A kidney specialist will be up to see you to find out why your kidneys aren’t working.” I couldn’t talk, but I was screaming inside. My kidneys? No – you’re not listening to me. I’m sure it has something to do with the brain surgery I just had!

Cheers!

TPP