Friday was IVIg. New nurse too. Lisa I guess moved on. Soleo is now outsourcing nursing to Enliven (never heard of them before). Friday started out early for me. Getting a needle shoved into your chest by someone new is an anxiety-inducing thing I always go through.
I tried to get as much work as I possibly could before she showed up at 9:30. She was on time. But I was up at 5am. After looking at probably 30 switches in the datacenter, my watch went off warning me that infusion is in an hour. My anxiety started to rise. I went into the bathroom, and pulled out my entire setup. Got the LMX cream on my port, and covered it with a bandaid. Took me 10 minutes to get everything out and setup.
As 9:30 came, she called me. I guided her into the maze of getting to the apartment, but she followed my text message directions to a T. She was at the door, and introduced herself. She was very nice and welcoming, which calmed me down. We got straight to business. We had my port accessed quickly. Last 2 ivig sessions we couldn’t pull labs. So we were planning on doing TPA, which is a clot buster. But to my surprise, the port drew back. I was relieved. TPA sucks. It can take up to 2 hours to get it to work.
After labs were drawn, we blew the saline through in 20 minutes, and had the IVIg started by 10. At the same time, the barometric pressure was tanking. The misery began. It didn’t let go either. The infusion itself takes about 4 hours. By the end of it, my head hurt. Of course my left ear was ringing. The pressure was dropping 3mBAR an hour, which for someone with extensive sinus / ear surgeries I can assure you at this altitude, it sucks.
Before she left, 20 minutes to go, I had to get on a work call. So getting Ceftriaxone in while I was on a call sucked. Everything felt rushed. She took my labs and headed out. After 2 hours, I had the issue resolved for work, but I was so miserable. I was throwing fevers of 100F. Sweating non stop. My whole body just ached. I tried to sleep it off, but I couldn’t sleep.
As the day progressed, my face was hurting more and more. The cracks in my lip went wide open. I know this is because it feels like my body is purging something. I held out for as long as I could, ended up taking 8mg of Dilaudid. Which I’m running extremely low on. The next morning I woke up, feeling more miserable. The waves of fevers came and went. I felt so dehydrated. I didn’t leave the couch the entire day. My sinuses were just dumping non stop. Everything hurt. I kept waiting for my sinuses to start bleeding, which is typical. I’ve noticed that if the pressure drops below 1000mBAR, that’s when it starts. Between that, and visiting the toilet every 30 minutes, something, some process is happening. This isn’t an immune response to the IVIg, this is absolutely infection.
Sunday eased up a bit. At least the pressure rollercoaster the past 4 weeks has calmed down. But the war continued on my lip.
It’s now scabbed over. This is the “shit” that’s been living in my face for 3+ years. The only thing I can think of is that it’s the itraconazole pushing out the infection. This isn’t bacterial, it’s fungal. Being exposed to black mold for so long has really lowered my bodies defenses when it comes to fungal infections. The massive fungal abscess that was removed from my frontal sinus in 2023 was a big indicator of how little my body does anything against this. Just shows what IVIg does for me. This shit is literally keeping me alive. It’s giving me a chance to fight back.
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