Wednesday, March 31, 2010

Chronology #2-Saturday in the hospital

After three hours of sleep (once I got my ibuprofen at around 4 am), I was awakened early Saturday morning by the phlebotomist coming to take blood, the patient care assistant who was taking my vitals and the nurse who was there to do the neurological check up. Picture me being drained of blood in one arm, the other arm occupied with "The Crusher,"my nickname for the machine they used to get blood pressure, and sticking my tongue out at the nurse.

All of this intense attention this early in the morning was making me start to feel I might be sicker than I thought. The blood tests were to check for other illnesses that might be present, and the vital signs and neurological monitoring were to make sure that the Guillain-Barre Syndrome wasn't progressing beyond my extremities. I learned these things on my own, doing research on the Internet. At this point, no one had discussed with me what Guillain-Barre was or how they were going to determine if that was what it really was.

I decided not to order breakfast because I had been told my MRI would be first thing in the morning. Adrienne showed up early with a cane, toiletries, some sweats, pajamas and other clothes and my favorite bathrobe. I was able to get permission from the doctor, by way of the nurse, to take a shower as long as Adrienne was in the room. Taking the telemetry machine off was really painful.

After my shower, and dressed in my own clothes with the telemetry machine reattached (I suggested leaving it off since my MRI was going to happen soon and they would just have to take it off again), I went for a walk in my bathrobe and with my cane to the nurse's station down the hall.

I asked the first person who made eye contact with me if they could find out when my MRI was going to happen, because I was going to see a neurologist that afternoon and I was certain he would want to look at the result. No, I'll just wait here and read the bulletin board while you call, thanks. I didn't really say the last part out loud, but I wasn't going to leave her line of sight until I found something out.

What I found out was emergency room patients go to the bottom of the MRI list on weekends, not the top. They would send for me in the afternoon, after the regularly scheduled MRIs where complete. I returned to my room and ordered breakfast.

Shortly after that, the first neurologist came in and examined me. I stayed in bed and he poked me with a pin, scratched my skin on my legs, and tickled the bottom of my feet. He also hit me with a rubber hammer and pronounced my reflexes as "dead." Then we talked about Guillain-Barre Syndrome, the mostly likely cause of my illness.

In view of the diagnosis he had just delivered, it was easy to forget that he was the first doctor I had spoken to after being in the hospital for 21 hours (other than the ER doc). Before he came, I was ready to go on about how humiliating staying in the hospital had been: being told I couldn't get out of bed by myself, having to get a doctor’s written permission to take a shower and peeing in a “hat” (to monitor fluid output) to name a few. But now I had something else to think about.

The neurologists are pretty certain that I have an atypical type of Guillain Barre Syndrome. GBS is an auto immune disease. That means that my body is attacking itself. Specifically, attacking the nerves in my extremities. Wikipedia says that it is the one of the most common, non-trauma induced form of paralysis. I think that what makes my case atypical is the slow rate of the progression. My symptoms progressed over a period of weeks, not hours or days.

Usually, GBS presents itself two weeks after a cold or flu like infection. The body has over reacted to the infection and begun to attack the sheaths that protect the nerves, starting in the extremities and working its way up the body. Facial paralysis can ensue. Also, heart and lung muscles can be affected, which was why I was constantly monitored by the telemetry machine.

Before they begin the treatment, I still need to have an MRI (the Waiting for Godot of medical treatments. It seems every time they say I’m getting one, they do nothing!) and another test called an EMG.

This neurologist felt my treatment would be Plasmapheresis. That is, they would remove my blood, separate the plasma and replace it with donor plasma. This treatment would take 10 days.

I got my MRI later that afternoon. Neurologist #1 had ordered additional scans. Since I was going to be in there for about an hour, they offered my something for anxiety, which I gratefully took. Since an MRI (or Magnetic resonance imaging) would involve me being inside a coffin like tight space, being as still as possible for the duration, I figured being relaxed would be better. I slept through the entire process. So much for being alert during the MRI.

Up until this week, GBS was one of those illnesses that the doctors on House become convinced the weekly case has; until they try treatment, when a new symptom appears. I hoped the doctors at Jewish Hospital in Cincinnati were better than the ones on television.


  1. Interesting that you say that your GBS was tagged atypical - in that it took weeks instead of days. This is an area that still confuses me. My dr's kept/keep telling me that it was a quick onset thing. I didn't have any identifiable virus/sickness that I could think of. The best I could come up with was a sore throat around NY. (they pounced on that and that's now apparently 'the visus cause'...). However I personally think that mine had been in a simmering state since mid-Nov 09, reaching 'rubber legs' state the week of 5th Jan 10. I have read other patient stories in which some have indicated theirs has come on slowly over a period of months. So my Dr's tell me one thing, but my instinct and other patients indicate otherwise. Probably of no consequence now, but still interesting to compare other people's experiences.

  2. I forgot to mention that I didn't have any onsiet infection either. I got up one Monday morning with very painful shine splints. 10 days later, I was in the hospital. .

    It also seems to be much more common than the statistics say. There is even a therapist at my physical therapist's office that has worked with BGS recovery.