meningitis RIP

figured my caring bridge site should be only for health status updates and I don’t need to include my personal thoughts on there - and I have a lot of thoughts. I’m constantly told by people that I have to write a book. A book seems daunting, so I figured I would start with a blog. So read on if you would like, or don’t, I won’t know either way.

I think back to several months ago, around November 2023 through February 2024. I was having horrible migraines and fatigue. I think I saw 4 different doctors about it. I feel like none of them took me seriously. I have always had migraines, but these migraines were unlike anything I had experienced in the past. I tried to articulate that to doctors, that these migraines were different. I usually ended up in the hospital ER when one struck. At the hospital, I would be given heavy pain medication and fluids and would feel better eventually. I was so desperate to prevents these migraines that I went so far as to getting a nerve block in my neck/head in January (I think sometime around then). The nerve block didn’t help, I was defeated. I had one doctor even suggest I try “a brisk walk.” I was shocked by this advice, like is that seriously the best medical advice you have for me? I started to document everything I did and ate to try and find a connection for what could be causing the debilitating migraines, needless to say I couldn’t find one.

In February, I felt delirious. Delirious seems like a dramatic word to use, but I don’t know how to better describe how I was feeling. I don’t even think I had a headache with the delirium, but I decided to go to the Urgency Room in Woodbury. I had gone to the Woodwinds ER the night before, and I ended up leaving without being seen because the wait was so long, despite still feeling delirious. I figured the Urgency Room would suffice and I could avoid an ER waiting room.

I spoke to the doctor at the Urgency Room and he was the first provider I had seen in months that seemed to take me seriously. He urgently ordered a CT scan. The scan came back and showed the ventricles in my brain were severely swollen. He told me I had to go to an actual hospital, as my case was out of the Urgency Room’s scope.

I arrived at UMN hospital and was given stellar customer service. Guess they prioritize you if your brain is compromised. The provider at the Urgency Room had called ahead and let them know why and when I was coming.

However many tests later, it was discovered I had severe meningitis/ventricular infection. I had an internal port called an Ommaya reservoir placed in my head for the Seattle clinical trial a few years ago. They tested the reservoir and found it was infected and that infection had spread to my spinal fluid. Not good at all, but at least I found the source of all my migraines finally. It wasn’t all in my head (lol literally), I had untreated meningitis that was causing the headaches, I wasn’t crazy. I was relieved to have found the source of the migraines, but frustrated because if one of the several doctors I saw in the previous months had taken me more seriously, the infection could have been found much sooner.

To that one doctor - pretty sure “a brisk walk” does not clear up meningitis.

I spent over two weeks at the UMN ICU. I thought I was gonna go crazy at some points. That is a long time doing literally nothing. Anyone who’s stayed overnight at a hospital knows, a two week stay is brutal. I counted and figured I had about 30+ different nurses. The care I received in the ICU was exceptional. I had surgery to remove the infected Ommaya device, surgery to remove my shunt and then surgery to replace the shunt. Although my VP shunt wasn’t the source of the infection, it was still impacted and needed to replaced.

I was discharged from the ICU March 7th. I had an MRI and everything looked stable and positive. The next week or so, I felt the best I had felt in years. They assumed I had the meningitis for quite some time, so it’s no wonder why I was feeling sick for so long. I just am relieved it wasn’t all in my head - not that it makes it any better per se, but at least I could do things to cure the infection. The following weeks were a dream, I felt amazing. Too bad the amazing feeling was short lived.