Diagnosis: Unknown; My Own Patient Experience

Two weeks ago, while setting up a Webinar around some pharmacy solutions that my company implemented at a hospital on Long Island, NY, I started calling people by the wrong name. Whats worse, is that I had NO idea I was doing it until people started correcting me with looks of concern on their face.

My boss asked, "Are you okay?"

"Yes, yes, I'm fine," I say.

Later that afternoon I stood up at my desk and felt a surge of blood to my brain that left me dizzy and confused. Scared of what was happening to me, my heart started to pound and the world around me became fluid and unsteady. I sat back down and decided that once I felt better, I would call it a day and go home.

That evening, after I put my one-year-old to bed, I called my mother to continue a conversation that we had begun earlier that morning.

"Where did we leave off after I talked to you this morning?" I asked her.

"Claire, I don't know what you are talking about, we didn't speak today," she replied.

"Yes, we did mom," I said annoyed, "you told me that Grandpa lost the remote control to the television."

"No Claire, I'm quit certain that we did not have a conversation today," she continued, "Are you feeling okay?" She sounded concerned.

I began telling my mother all the other things that occurred that day and we chalked it up to stress. I took a hot shower and went to bed early hoping that a good night's sleep would cure my confusion.

The next morning, while in a meeting, the same dizziness and confusion started happening along with a dull headache, and I asked my boss to take me to the emergency room. After a myriad of tests, everything looked clear and I was told to go home and follow up with my primary care physician.

My PCP sent me for more blood tests and an MRI. When I returned home from my doctor visit, I was pummeled by a migraine. With my eyes closed and fighting back the nausea, I grabbed my cell phone and crawled to the couch. Since my husband was 3 hours away on business, I frantically called my mother to come sit with my children as I was clearly unable to take care of them.

Four hours later, the headache subsided and I emerged from the dark cave that was my bedroom.

My mother and husband were sitting on the couch and I said to them simply,
"Something is wrong with me."

The next morning my mental state had changed. I was having a hard time speaking - I had to concentrate on every word. I thought I was having a stroke.

Again, I was taken to the emergency room and this time was given a spinal tap because the physician was afraid that I may have had a brain aneurysm or some kind of bleeding in the brain.

While I waited for the procedure, I couldn't help but think about all the other scared patients in the hospital. Patients with cancer, or a heart attack, or respiratory issues, or patients like me who had no idea what was happening to them.

I wondered if the doctors realized how vulnerable we all were and how we count on them to take care of us and to keep us safe. I wondered if they realized how much our loved ones count on them too. Because they too become vulnerable and feel unable to help.

It was SO ironic that my thoughts were interrupted by a physician who began to argue with someone on her phone outside of my room.

"It CLEARLY STATED on the chart that she is ALLERGIC to that medication! How could you be so irresponsible! Now she is back in the emergency room!" she shouted.

After spending countless days at my job, reading, talking, and writing about medication errors, I was witnessing the aftermath of one right outside of my hospital room. "This is unbelievable", I thought to myself.

After the spinal tap showed a clear result, I was partially diagnosed with a complicated migraine. Apparently, these migraines show similar symptoms to stroke and/or aneurysm. I just needed to get my MRI to rule out any tumors.

The next day I received my MRI (it was clear) and my PCP called a neurologist who saw me a few days later. For the following week, I had two migraines a day. One in the morning and one in late afternoon. Some were tolerable, others unbearable.

And throughout all, I had to manage getting test results from two different hospitals, my PCP, the lab, and the MRI facility. Some organizations were wired with HIT, others not, and once I finally sat down with the neurologist, some report pages were missing from the fax machine and the neurologist had to take my word for it when I told him that all results seemed clear. Some reports had my name spelled wrong. Some even had my maiden name to add to the confusion.

In the end, I've been prescribed some preventative medications and some medications to take if I feel a migraine attack may be coming. It almost feels silly that after fear of a catastrophic condition, I'm left with a bunch of headaches (not to downplay migraines, they are indeed, debilitating). Through this experience, I feel like I've witnessed all the things that I study, analyze and write about. Medication errors, health information technology, the role of the primary care physician, the role of the pharmacist, and the most important role - the role of the patient.

I realized that I shouldn't and couldn't put my care in the hands of any ONE doctor, or nurse, or pharmacist. The person ultimately responsibility for my care was me. I am even more committed to the work that my organization does now that I've had this experience.

I'm excited to get back to business and to continue this important conversation. But, hopefully this time, I'll use the right words.

I believe in my work.

Claire