I'VE GOT WHAT?!?!

I’VE GOT WHAT????

July 7, 2021 was one hell of a day. Once we were notified, I had an appointment with a neurologist at Rush University Center in Chicago, a flurry of activities began. Book train tickets, ask mom to come stay with our daughter, try to gather any medical records I could find about what brought me to where I was. It was a tough decision about leaving Anna at home, but we figured it would be a very boring day for her, not to mention having to be up so early to catch the 7am Amtrak.

So my mom came at a moments notice to stay the night so we could get up and out to catch the train. I remember crying at some point on the train, head up against the window like some bad chick flick. I was scared. And hopeful. And so very tired of it all. Arriving at 10:30am left us a few hours before our appointment. We hung out around Michigan Avenue near the art museum. Hotter than hell. Too unsteady to really walk anywhere. Crappy street vendor food.

The Uber to Rush came and we headed out. I have never been to a Chicago medical center and wasn’t sure what to expect. It was busy. And crowded. But the Neurology floor was quiet and serene. The waiting room was almost empty. They verified I had prepaid my mandatory $250 for the visit. Ouch.

Most of that day was a blur to be honest. I was taken in for the EMG where a personable funny guy administered one part of it.  I just laid still on a bed, and they stuck little patches all over me. It required nothing on my part. He sent mild electrical stimulation to test the nerve’s ability to carry electrical impulses. I had no clue how I was doing, and he offered nothing. The neurologist came in for the second part and conducted it herself. This part of the test involved a tiny needle she inserted in various places on my body. The needle acted like a tiny microphone. It was attached to a computer and fed back audio and visual. It almost sounded like when they do a sonogram. I still had no idea what my results were telling her.  The whole procedure was pretty painless. I know some people find it uncomfortable or are sore afterwards, but I have a pretty high threshold for pain.

So afterwards we sat in the waiting room and waited for her findings. It was starting to get close to time to go to the train station to make the train headed home so we were both quite antsy. After what seemed like forever, the doctor came out and told me most likely I had Chronic Inflammatory Demyelinating Polyneuropathy. This meant absolutely nothing to either of us. She nut-shelled it by saying basically my body was attacking the myelin sheath covering my nerves, thus slowing, or stopping the response. Which was why I was weak and couldn’t lift my arms very far or take big steps when I walked. I was not entirely sure what all this meant but it was the next sentence she said that rocked my world.

She HIGHLY suggested I be admitted to the hospital right away. The hospital 4 hours from home, 4 hours from my daughter who I had not spent one night away from since she was born. The hospital that most definitely was NOT covered under our insurance.

So, after checking that they did have a bed available for me, we determined going through the emergency room was the only way insurance would cover my stay. Time was ticking on the train departure too. I have no idea why, but I kept insisting my husband go home to be with our daughter and they would both come back the next day. I was put in a wheelchair, and we travelled the maze to get to the emergency department. A Chicago ER at 5pm on a Wednesday. Not a pretty place. Scary really. Finding a place to put me was a challenge. Easily 100 people milling around. My husband reluctantly took off and was gone maybe 15 minutes and was back. Train ticket or not, he couldn’t make himself leave me there. I was never so relieved in my life. My bluster was all gone. I didn’t want to be there alone.

So began our wait. We booked him a hotel close by so as soon as I was in a room, he could grab some shuteye and get the train home in the morning. Hours passed. Fourteen to be exact. The hotel never got used. The morning train was now out. We found a better place to sit ourselves, in a large atrium just off the emergency room. We watched it slowly get lighter as my husband would go check periodically to see where we were on the list. Real trauma emergencies kept bumping us back. Around 7am I was finally called. In a tiny room we waited some more.  Just because we were there didn’t mean I was actually being seen. They had me pee in a cup. My vitals were taken. I was finally told they were waiting for the attending ER doctor to be available. Once I was assessed and they were aware the neurologist wanted me admitted, suddenly there was no bed available. I wanted to cry. Would I have to do this all over again?? I made a phone call to the neurologist’s office, which by this time was open, and spoke to someone who told in fact there WAS a bed open, and my name was on it. Just as I hung up the ER people came in and said I was good to go. So mini heart attack for no reason.

I was finally taken to a room. My husband managed to find a train that would take him as far as Galesburg and my mom and daughter would pick him up there. After a tearful goodbye and a promise of returning the next day, he left.

So here I was miles from home when I had expected to be home the night before. Which meant I had no extra clothes; no personal care items and no birth control pills. I was in a hospital gown, but I had been awake 28 hours by this time. But could I sleep? No.

They decided I needed a spinal tap to doubly make sure I had CIDP so they could start appropriate treatment. I had never had a spinal tap. Had my daughter completely drug free. They came right to my room to do it since that was quicker then booking something somewhere else in the hospital. There were at least 4 people in there doing the procedure, a couple of them just observing. It was horrible. It felt unnatural and invasive and going off of NO sleep, I admit I cried. It was just the culmination of all I had been through.

It was decided yes, I did have CIDP and it would require 3 days of infusion of an immune globulin. Also known at IgG. So, what my treatment is called is IVig. There are only a few types available and the first one they tried that evening spiked a fever in me, so they had to slow the drip. It ran on into the night, vitals every 30 minutes. I didn’t really sleep well, amazingly enough. I recall looking at the clock at 2am and wondering why I just didn’t pass out. The automatic blood pressure cuff puffing every 30 minutes did not help. It was decided the next day they would try a different brand.

Friday my hubby returned with my daughter, and I was never happier to see clean underwear! And the two of them of course. I still hadn’t showered and felt gross. The neurologist and a team of others were in a lot, constantly testing my strength and a load of other things. I just have to say though, everyone I encountered at that hospital was amazing. The nurses, the interns, the cafeteria staff, the janitors, everyone was wonderful. I felt well cared for. What a change from what I had experienced so far. I knew what I had! I knew they were treating it! I felt relief.

After the fam left on the evening train Friday they would not be back till Sunday when I hopefully would be discharged.