Late Start

Not by any means my fault. We got to the infusion center 10 minutes before they opened. Once they opened the doors, it was a ghost town here. Literally 2 people plus hepworth. Nobody in infusion. We hung out till 8:15, then headed up to ENT.

Around 8:30, we got called back. But sat forever waiting for Hepworth. Around 8:50 he finally came in. Talked about all the sinus pain / pressure. Showed him the picture of the polyp, and the crud that keeps coming out.

He got up and did the Endoscope. But what was t usual, was how much it hurt when he went up the right side. I did everything I could to sit still, but the longer it went, the more I wanted to gag. Then left side, not as bad.

He then sat and explained that my turbinates are still inflamed, and that my septum has re-deviated again to the right. Then as expected, he suggested we repeat all the sinus surgeries I’ve had in the past. He will remove the other ethmoid but will leave my sphenoids alone. So he will have the surgery scheduler add that onto the list of shit we need to address. So at least there is that. I also brought up vancomycin. Or Dalbavacin. Don’t care which one I get, but I’m done playing these fucking games. I told him to tell Kaufmann that since I keep growing Staph, that we need to treat this as a MRSA/MRSE infection. No substitutions. No compromises. Just do your fucking job, give me what I need, and shut the fuck up.

If ID won’t help, I’ll just order vancomycin from india, get my own huber needles, and just do my own infusions. Clearly the incompetence of infectious disease has pushed me to this point. I don’t trust them. At all.

I went downstairs, and headed to get IVIG. My port was accessed pretty quickly, but as expected, it wouldn’t return. Whatever. Guess I’ll just have to get it TPA’d. I’ll just have them push 2 heparins in before I leave. I almost got it working. But most likely it’s the fibrin sheath on the catheter just like the PICC had.

I had them start my rate at 350mL/h right away. I don’t wanna fucking be here any longer than I have to. I seriously hate sitting in this place. Hopefully I should be outta here by noon or so. Since I’m doing 45g, that’s 450mL. So end to end I should be able to do the infusion in about an hour and a half. So basically the same time it took to do my SCIg. But I only have to do it every 3 weeks.

Tomorrow I see Sarid to get the official order to move me to home care, which is really what I want. I can do all of this myself. I just need a couple Huber needle sets, hand me my IV pump, and give me my IG boxes and leave. I don’t need anything else. During the same appointment, I’m gonna talk to Sarid about getting a handicapped placard. Fuck it. I think it’s best to just get that over with. Just gotta print out the form, have him fill it out, and submit it.

Will be nice to have fuck you parking. Anyway. More later.