It struck me the other day that I don’t think I’ve ever actually gone through what happened when I had Guillain-Barre Syndrome.
I want to do a post in the next couple of weeks that I think is better understood if you know the ins and outs. To to any healthy readers who are squeamish… well, either you’ll greatly appreciate your health after this, or you’ll tap out. Either one is totally understandable.
By the way, as a (very) brief overview, GBS is an auto-immune disease that strips nerves’ myelin sheaths. This stops the brain from being able to communicate with the nerves, which means our brain can’t move our muscles. In short, you’re paralyzed (to varying degrees, depending on the person) until the stuff regrows.
It was just a couple of weeks into winter quarter. I had gotten a stomach bug on Saturday, but was feeling human again on Sunday.
Sunday night, my toes went “numb.” Numb is the word the medical folks use. It felt to me like they were just asleep.
The next day it’d spread to my whole feet and the left half of my left arm. Any food that tasted like anything made me want to throw up.
It was MLK day, so the student clinic was closed. My aunt’s PCP wasn’t, so I went there and was told I had bronchitis. The numbness was probably an offshoot of the stomach bug.
That night, I tried to walk and fell to my side against a wall. The next morning, I went to the student clinic. I was again told I had the flu.
I was given a saline bag, yet I felt worse than when I came in. I had to take a taxi the quarter mile back to the dorm.
In the next couple of hours, I couldn’t get off the bed myself. My boyfriend had to bend down, let me hook my arms around his neck and then pull me up. Then walk me to the bathroom.
He really freaked out when I puked up what was, I assured him, the red Jello I’d eaten 15 minutes before. But I was too weak to enjoy how funny it was.
He told me I needed to go stay with my aunt and uncle, who lived in the same city.
Unfortunately, they kept nagging me to drink water, which caused coughing fits. Later we realized my throat muscles weren’t working properly, and I’d been aspirating the water.
During the night, I stopped being able to stand up and had to crawl the 10 feet to the bathroom and hoist myself up onto the toilet. Any time I tried to puke, all that came out was spit. I was using a bowl they’d given me, which their cat kept mistaking for a second water bowl. I spent a decent chunk of the night shooing him away.
The next morning, my aunt, in words she’d later regret, told me that if I didn’t drink water, she’d take me back to the hospital. My uncle’s shift started later, but he still was ready to leave around 11.
I begged him not to go. I could barely make it to the bathroom. So he called my aunt, and she met us at the student clinic.
This doctor noticed I didn’t have reflexes, which made him think of GBS, but he told us I was too young for that. He sent us to the ER, and he told us to at least ask about the syndrome.
The ER doc was probably humoring us when he ordered the tests. He seemed pretty sure it was the flu. But it was the ER, so they did labwork.
Since results take forever in the ER, the nurse was able appreciate how quickly I was degenerating. He told the doctor that I was weaker each time he came in, which was at least every 30 minutes.
They decided to admit me and gave us a brief rundown of GBS. I was so out of it that I thought I’d be missing a week of school at most. I was annoyed at all the catch-up I’d have to do.
They put me under so that they could intubate me, do a spinal tap, insert a peripherally inserted central catheter in my arm and insert a regular catheter in the obvious place. But again, I didn’t really take any of it in.
Luckily, they put me under right as my respiratory systems started failing. It’s a weird thing to feel like you’re drowning without any water around but with a puffer mask thing on your face. “Puffer mask thing” being the technical term, of course.
When I woke up, I was intubated, catheterized and spinal tapped. I also found out my mom would be there in a few hours, which was music to my ears.
They gave me something rather grandiosely called a spelling board. It was actually a laminated piece of paper with letters in rows and a few common phrases at the bottom.
My mom got in a few hours after I had woken up. By then, someone had to hold my arm up to use the “board.” My hand movement was gone by the middle of the next day. I had to shake or nod my head while my mom would ask, “Is it in row one? [head shake] Row two? [nod] Okay is it e [shake], f [shake], g[shake], h[nod]” And that was the first letter of the first word.
The phrases at the bottom did come in handy, though. The most common used one was “Please wipe my drool.” You salivate a lot when you have tubes down your throat.
This is an actual thing. You start to be affected when you can’t get proper sleep.
The nurses have to draw blood, give drugs, etc throughout the day. Some of those can’t wait until you wake up on your own.
I got a chest x-ray every night or two. But the time between the nurse telling us and them actually coming was usually more than an hour, and I didn’t want to fall back asleep only to be woken up again.
At 7 a.m., I’d wake up to people staring at me over the bed. Medical students. One would be asked to recite my case. Then the attending would check my reflexes — always absent — and run the handle of the reflex hammer up the sole of my foot, asking if it hurt.
Picture feeling like your nerves had been laid bare. Now picture that metal running up your foot. I fantasized a lot about grabbing him by his jacket, drawing him down to my face and screaming, “Yes, that hurts! It hurt yesterday, it hurt today, and it’s going to hurt tomorrow. STOP IT!”
- The stress shot my heart rate up to around 140 (or was it 160?) bpm. They had to put me on blood pressure medication.
- For a week or so, my internal thermometer essentially broke. I was hot all the time, but occasionally would feel like my skin was going to burn off. Mom had to lay rags soaked in ice water on my skin. While she wore a sweatshirt in the cool of the hospital room.
- I had a few days where I just had an unrelenting, wandering itch and no way to scratch.
- The sensations of nurses getting compression stockings on and off made me want to throw up.
- They put me in boots to keep my feet flexed. This kept my Achilles heel from shortening, but man, it was uncomfortable.
- The semi-daily heparin shots burned going in.
- I had to be percussed to help avoid pneumonia. They’d hold something like a small version of the paint mixers in hardware stores against my back.
- Someone came in to percuss me the day I got my feeding tube put in. Mom told him he could totally do that… after she drilled through his stomach and percussed him. He left pretty quickly.
- They gave me Advil after the feeding tube surgery.
- I still got pneumonia, which we only found out about when a nurse said it seemed to be clearing up.
- The treatment left me freezing. They cycled bad plasma out for good, and room temperature is nowhere near 98.6 degrees.
- One day, it felt like my toes were being crushed. Later, it became like a cleaver slicing into my toe bone, wiggling briefly and then leaving. Turns out nerves healing is quite painful.
- Despite that being a problem in most GBS patients, they didn’t start me on Neurontin, which takes up to a month to build up in your system, until the pain started.
My most vivid ICU memory
The thing I remember the clearest happened one night when both of my parents were in town. I had regained some head movement — or maybe it was before I lost it initially. Things get a little jumbled. Point being, I had some head movement.
Both of them were asleep in chairs by the bed, and the nurse came in but didn’t check to see if I was awake.
I wanted company or sleeping drugs. Being alone was boring and scary. So I decided to be selfish and wake them up. I went to say something and realized I couldn’t. (I was on a lot of drugs and was therefore easily confused.) I figured I’d rattle the railing by the bed and realized I couldn’t. (See previous parenthetical.)
That’s when I realized how truly helpless I was. My heart started racing a little. Which is when I got the idea to induce a panic attack. I’d set off the heart rate monitor’s alarm, and people would wake up. Brilliant… when you’re too out of it to realize that alarm = danger, so maybe pushing your heart rate there artificially is a bad idea.
But it worked. So I did it a couple more times in the following days. They finally realized what I was doing and put a call button on my pillow. I could just hit it with my cheek.
In the next few days, I did it a couple more times before they realized what was going on. They put a call button by my head, so I could just hit it with my cheek. Which was fine… until I couldn’t move my head.
After the fifth treatment, I got my shoulder movement back. I slowly got a teeny bit of finger movement back. I could move a couple of my fingers maybe a quarter of an inch. Or maybe an eighth. I don’t remember.
Point being, they finally determined that I was recovering to the point that I needed to be in a long-term care facility. So I was moved there.
That was the first 19 days of my three-month hospital adventure.
Read the second (and last) part of this tale — The time I was addicted to drugs — by clicking this link.
So what’s your worst hospital experience?