Quick Update on Where We are at Dr-Wise

The sphenoid infection is getting worse. Last WBC was 17. Today I met with my immunologist and spoke to him about 4 topics:

• IVIg Dose increase
• Xolair Progress
• Hepworth being difficult to reach
• Old infectious disease group out

As we talked, he just listens. Provides active feedback. My IVIg dose is increasing to 55g. Staying on Xolair.

Brought up the fact Dr. Kaufman has been trying to actively contact Dr Hepworth to indicate that IV antibiotics are failing. They did call me yesterday raising this concern and I told Rebecca, Kaufmans NP, to have Kaufman text/call till he responds. Send official faxes to his office recommending surgical intervention. The minute I brought it up, he sent a message over to the practice manager with an urgent message to contact me and Kaufman.

Finally I told him what infectious disease did last visit, that once they transition care back to Hepworth, they are out. He agreed instantly.

As for how I’m feeling, the pain is worsening.

• Severe pain behind left ear.
• Pain behind right ear.
• Extreme pain between my eyes.
• Immense facial pain.
• Gagging every time I blow my nose.
• Bloody/Brownish discharge from nose constantly throughout the day. Mornings are bad.
• Bleeding septum.
• Severe pain where the abscess was removed in my left frontal sinus.
• Back of my tongue is black/brown
• Constantly Itchy
• Waves of fatigue are back again.
• Ears constantly ringing.
• Blackout happened last night
• The two lumps in the front of my jaw are getting bigger. More painful as each day passes. My mouth is on absolute fire

I was getting the cats food ready, and I felt.. off. As I got all their stuff out, I started to feel the room to slightly spin. I then turned my head to talk to Anies and WHAM my neck cracked, stars everywhere. The pain in my left ear felt like someone was standing on it.

I turned around and tried to get to the floor before it happened. Next thing I know, Anies is standing over me. I just stayed there for a few minutes. Then sat up, and just held onto her leg for dear life as the room was spinning non-stop. This lasted about 15 minutes.

It could’ve been the massive snowstorm we’ve been getting, and that was the “storm front” moving in. Those have always made me feel not good. But I haven’t had a blackout session in awhile. All this means is surgery just needs to happen. I feel like I’m stuck in a loop again.

I can see the exit to the abyss I’ve been in for +4 years, but the ONLY way out is this surgery. Open/Empty my sphenoid. Make both exit points much larger. Get rid of whatever is living in there. And please for the love of god, get rid of these cysts in my face and neck. The pain is just something else. Then go under my tongue and remove the lumps.

This would be a huge step forward if I could make it happen, but Hepworth’s office (not him) is getting the best of him. I need his help. He’s the only ENT I trust since the sphenoid is a DANGEROUS place to have surgery. There’s the optic nerve, and one of the main arteries back there. I need his patience, and precision.

Lastly my jaw. The infections there. I’m sure the implants pushed it in deep, and this is the fallout. We gotta get Dr. Dobbs on board. He just needs to put his UC Health “mentality” to the side, and come out here where we are doing actual medicine. Can’t do textbook stuff anymore.

I need this done soon. I feel like I’m headed towards catastrophe soon if we don’t deal with it within the month. Surgery will take me out for 3 days. So just do it Wed/Thur and I have the weekend to recover. It shouldn’t be that bad.

I meet with Pain Management tomorrow for Dilaudid refills.

Thankfully ketamine is this weekend. Kind of a necessary evil at this point.

I do have a bigger blog post that’s slowly coming along so keep an eye out for that one soon.

All for now.