Dalbavancin

Woke up at 3am this morning to the usual pus in my mouth and in my sinuses. I’m averaging 3-4 hours tops with sleep. That’s with Ambien too. I’m just a walking husk at this point.

I got a pair of bone conduction headphones for when I can’t sleep and I watch TV. That way I don’t wake up the boss with this fucked up sleep schedule. They work pretty nice. Of course the apple TV doesn’t wanna play nice with them, I’ll hear periodic cutouts. But when I pair it with anything else they are fine.

Jesus fuck Apple. What happened? Used to be a premium product/company. I’m glad I dumped them.

As I watched Bob’s Burgers for the 40th time, I kept looking at my watch. I have a HOT date at 9am.

Dalbavancin

Its a mouthful. Even more so it’s a lipoglycopeptide. Similar family as vancomycin. It feels like with infectious disease, it’s an intimate dance. I’m glad that they are finally taking me serious, but I think moving me away from the daptomycin was a bad move.

Yesterday when Dr Kaufmann finally started talking about being colonized with Staph Epidermidis, aka CoNS infection, I started to think about how I tried telling that jackass Dr. Terra about it and that “there’s no way / not possible” that I have it. I literally showed this asshole culture after culture of the same thing.

“You need to find a better dermatologist”

I about died inside when that was his response. Listen asshole. Pus is coming out. This is what’s IN it. No fucking shit I’m aware it’s commensal, but there’s only a 1000+ research articles on where it can become an opportunistic pathogen. I dont need a PHD to read research papers. But of course since I don’t have one, I’m just a lunatic. Even showing him the pus coming out of my mouth “that doesn’t look pleasant”. No fucking shit idiot. Even in person. Showing him the pustules. The cysts. All I heard was static in this guy’s head. Probably could even classify it as a flatline.

I would even talk about what works / what doesn’t. He just didn’t give a fuck. He didn’t even want to put any ounce of thought into helping me figure this out. Instead let’s just play the you’re crazy card and move on.

I was crazy to try getting help from him. You fucking wasted 2 years of my life asshole. Fuck you.

But back to today. Finally. Kaufmann thinks it’s Staph. People with CVID have an extremely difficult time dealing with it. Any form of it.

Yesterday she said going back to IVIG was probably for the best. And I probably couldn’t agree more.

I got to the office at 9am. They have all been super supportive. The new nurse is pretty cool. I was brought back as soon as I got there. I sat in the chair, did vitals, showed her the PICC line was flushing / returning and she said this will take awhile. As I watched her reconstitute the dalbavancin, she started telling me the process. And holy shit is it complex. The dalbavancin comes in 5 vials. Each vial has to be reconstituted with either sterile water, or a dextrose cocktail. Using saline will immediately turn it into 1 big crystal.

Next she started to push it into the vials, but it’s an extremely technical process. You have to push it in slow, you cannot shake, disturb or allow it to foam, otherwise they have to start over. This took about 30 minutes or so to do. She hung the bag, and pumped it in.

Just like Vancomycin, about 5 minutes into the infusion, the top of my head started to feel weird, then it progresses to an itchy head. After that it feels like every muscle in my body is firing. Then this cooling feeling happens. It’s weird. But that’s how it goes with this stuff too since it’s a close relative of Vancomycin.

About 20 minutes into the infusion, the nausea hit me like a brick wall. Good thing I always have stuff with me to help. Zofran is definitely handy. After the infusion finished, I stood up and immediately started to feel it in my shoulders, neck, hips, ankles, and knees. The aches.

By the time I got to the car, it was getting worse. I just focused on getting home. As I walked through the front door, it was getting harder and harder to move. My face wasn’t hurting but it definitely felt weird. I slept till 3pm. I woke up feeling much worse. But this is to be expected. This is what signed up for.

Fever started hitting me around 5. It’s been hovering around 99.3. But for me, that’s an indication my body is fighting. Around 6 it feels like an elephant is sitting on my chest. My heart feels like it’s speeding up / slowing down.

Everything just hurts, everywhere. I’m sure it will take time for my body to get through this, but this is the help my body has been asking for, for a very long time.

The real hope is that this rids me of everything, that would be ideal, but the second surgery needs to happen. Hopefully Dr. Kaufmann can get Hepworth to speed this up. I did send a portal message with the labs and CT results but no response.

Whatever.