“It still doesn’t seem Real” ends with me being paralyzed.
This piece, and any that follow, will be getting help with excerpts from “my gizmo.” The “gizmo” is a Sony Dictaphone. {I bought one for my Dad several years ago in the hopes that he would tell lots of his stories into it, so that I would have them for posterity. He dubbed it a “gizmo” and it was only used when I was at his place. I got one for me and use it to clandestinely record our phone calls. Shhh…he doesn’t know.}
Since I wasn’t able to use a laptop between 9/18 and 10/26, I started keeping “notes” using the gizmo while I was at the hospital and inpatient rehab. {I have been keeping a journal on my laptop since 10/26/12. Wish I’d started loooong b4 that!}
On the morning of 9/18, as soon as a room was ready, they transported me to Room 849 of the Jared Neuroscience wing of Cox South. I wasn’t able to use the gizmo until the 23rd.
“They seem to know what they’re doing. But they’re having trouble diagnosing exactly what’s wrong with me? They put me on something called an IVIG* thing on Monday and on Tuesday I was getting a little use of my left hand, still nothing with my right on Tuesday and I’m probably getting some of this messed up because I’ve been on so many drugs, but not the kind of drugs I like.”
At first they thought it might be GBS. “There’s the Guillan-barre syndrome. And this other one. I have a total mind block on what it probably is…I can’t remember the name!” {I’m pretty sure I’ll never ever forget those two words now: Transverse Myelitis!}
My extreme claustrophobia didn’t help with the diagnostic process. “On Tuesday they sent me down to do an MRI and as soon as I got into the tube I pressed the button. I was freaking out. An hour later, they sent me back down. I stayed in there for like 40 minutes. I don’t think I squeezed the button, but maybe I did and it turns out that they would have liked two passes, one without contrast and one with. I didn’t do the with contrast, and came back upstairs.”
My neurological NP and hospitalist were great. They told me how important the MRI with contrast was. “They loaded me up with Benadryl and a shot of Ativan and I did it for the duration. They discovered I have a lesion on my spine, which is complicating the diagnosis. Because it might be an indication of Ms. Isn’t that lovely?” {No MS…but it was also an indicator for Transverse Myelitis!}
“The next procedure that was done was the Spinal Tap, which wasn’t painful at all in my drugged up state. They roll me up in a ball as tight as they can. Which is really hard based on the lack of mobility, especially on my right side. They sent some some of the spinal fluid to the Mayo Clinic to have it diagnosed. No MS”
I didn’t mention it on the gizmo, but about that time they started me on IV steroids for several days.
“The next treatment that began was plasma transfer or PLEX, and that started on Friday. That involved putting what they call a catheter down the carotid artery in the right side of my neck. It’s got 2 little ports and what happens is on one side they’re flushing plasma out of my body. On the other side, they’re putting new plasma into my body, and so they get about 20% of the plasma each of the 5 treatments. When they’re done you’ve had ‘an oil change’ of your plasma. Each procedure takes three hours. It addresses both the Guillan-berre and this other one, which I guess I’ll keep calling ‘the other one’ until I get can remember it.”
So those are the treatments: IVIG, spinal tap, IV steroids, IV antibiotics, Plasma transfer.
But how was I doing? The gizmo was no help for that first week. Fortunately Shelly set up a Caring Bridge site on Friday the 22nd and wrote about it there: “He can move his left hand now and has a very strong grip! He is feeding himself, taking a drink of water, and brushing his teeth with his left hand. He can pick up his left leg and wiggle his left toes. He can move his right hand, but not his right leg. With help, he was able to sit up on the side of the bed twice.”
For the first few days either Shelly or my sister Paula fed me and brushed my teeth. Four days in I was able to pick up a fork and a tooth brush in my left hand. Shelly or Paula slept every night on a couch while I was in room 849.
She also wrote: “He gives the nurses, the aids, and the docs his personal recommendations for music and tells all kinds of stories.”
All the rooms on the 8th floor were large and private. Mine had a great view. I saw lots of sunrises (I wasn’t sleeping well) and moon rises.
I had Shelly bring my laptop (with it’s thousands of songs) and Bose speaker. She had to operate the laptop to launch the playlists. (I didn’t touch a keyboard for almost 6 weeks.)
There were “concerts from” playlists from several years of bands I had seen that particular year. Several were 6 or 8 hours long from years when I saw 50+ shows and went to a few festivals. The staff started calling 849 “the party room.”
They did that even when they were responding to me pressing the call light when we thought I might have had “an accident.” Losing feeling from the mid-torso down also meant that I had no control over my bowels. (Smell was the deciding factor re pressing the call button. I had a catheter, so urinary incontinence wasn’t an issue.)
As if that isn’t TMI there is this: I’ve often told people that if I had 1000 bucks for every individual who wiped my ass in Room 849 I’d be able to buy a new Lexus.
I had some visitors. (I’m sure tahe some of them were freaked out!) I made and received a few calls toward the end of the week. Shelly read me the comments on Caring Bridge or comments to her FB posts.
I had lots of Jimmy V moments: I laughed; I thought; I cried.
I really am a lucky old coot with old friends and many that I’ve made since moving to MO in 2011.
And so ends week 1 of “the other one.” In week 2 the words “Transverse Myelitis” became indelibly etched into my memory.
*IVIG= “Intravenous immunoglobulin (IVIG) is a pooled antibody, and a biological agent used to manage various immunodeficiency states and a plethora of other conditions, including autoimmune, infectious, and inflammatory states. The ultimate goal of this therapy is to normalize a compromised immune system.”