Wind In My Sails

I don’t sail though.

Infectious disease today was somewhat inspiring, but at the same time, frustrating.

So first things first. The voriconazole. The serum levels are probably nearing therapeutic levels. Because things are starting to suck more. The side effects I’m starting to feel, in one word, shitvortex.

Every day at 10am I have to take this drug, that turns things upside down. Why? The dilaudid is definitely contributing towards the side effects. As the voriconazole starts to metabolize, I’m instantly cast out to sea. Which is how the rollercoaster starts. Soon after that, the hurricane feeling starts. I feel like I’m spinning in one direction, and the room spins the other way. My head just feels weird. Disconnected at sorts. “Airy”. Floaty. Not in the high kind of way.

About an hour in, I’m hit with extreme exhaustion. I feel like I’m stuck between almost falling asleep, and fighting to stay awake. The exact middle.

Closing my eyes makes the spinning stop, but then makes me want to just sleep. Opening them, is back to the shitvortex.

It still feels like I’m chewing razors. The swelling seems to be going down. It feels “less” anyway. The nasty peanutbutterychocately sticky stuff is still coming out of my sinuses. Today, however, they feel more turned on. The surgery did give it an escape path now, but it’s just constant.

On the scalp stuff, it hurts more. Anies counted 6 clusters brownish bumps on the top of my head, but subtle. When you push on those parts, it feels like she’s stabbing straight through my skull. There’s also one “volcano” looking one more towards the upper rear side of my head. Right where the neck meets your head. Which probably answers why it hurts so much when I move my head. This morning, the itchiness turned things up to a 9 on the need to itch scale.

I know I’m not supposed to, but resistance is low. Of course I’m gonna itch. But it hurts, and feels good at the same time. Similarly, the red spots have begun to return across my neck, face, chest and back.

As I got labs this morning at infectious disease, as I was leaving, Rebecca who is Dr. Kaufman’s PA was there. I asked if I could talk to her privately. I started off by asking her about if there is any update to what pathology is doing about the MRSA, and secondly the Aspergillus. she said she would take a look, and she’ll be back.

About 10 minutes later she came back. With the labs printed in hand. They didn’t continue the testing on the bacterial side. It’s just simply stated as Gram Positive Cocci. Which means it’s either MRSA or MRSE. Again, this was found IN an abscess. Not just a random swab across a wound where you’d “accidentally” catch skin flora. Because it does live there, but it’s not supposed to be in an abscess. 9/10, that’s the reason pus forms. It’s your body trying to seal it inside, and it just starts throwing everything at it. However, from previous bacterial cultures where they actually throw the bacteria on a pitri dish, with antibiotics on small discs. Which shows what the bacteria can be treated with.

Almost every bacterial culture taken has shown it’s resistant to methicillin. Which is important to note. Because the only antibiotics that show elto be effective, was Vancomycin, Dalbavancin, Daptomycin, and Linezolid. It’s either MRS”Aureus” or MRS”Epidermidis”. Real pathogens that once inside the human body, can unfurl hell. In someone who’s immunocompromised, hell inside of hell on top of hell.

So I started to explain how concerned I am. And I just started spitting facts. That they keep ignoring my CVID for starters, they don’t use that as a basis of their action. Secondly, how I’ve been on those antibiotics, and I STILL GREW BACTERIA. The antibiotics are the big guns, the nuclear option. So I told her that I need a 2nd dose. Because I still feel the abscesses in my face, mouth, jaw, and neck. I can literally pinch them. Again, I demonstrated it in front of her. Where all this is.

Flipping to the fungal preliminary report. An unfamiliar name showed up on the sheet, not once, but twice.

Non-Sporulating Dematiaceous Mold Strain 1 and strain 2.

So this means I have 2 different molds growing. But the more I researched this, the more confusing fungus/mold becomes. It’s too soon to tell what they are. Because unlike aerobic/anaerobic cultures that typically are done in 3-4 days, fungus/mold needs to be grown. For several days. The typical waiting period is 14 days, but are held up to 60 days. Because each fungus/mold is different.

So that’s the tricky part about fungus in general. But as I start to research fungus and mold, the culture results are not consistent with what infectious disease says. It’s not aspergillus.

The voriconazole is a broad-spectrum anti-fungal mold medication. Without insurance, it only costs $2,800…. I was very clear with Rebecca that this needs to be over treated. Just like the MRSA/MRSE that grew. I’m done being chronically ill. I joked to my infusion nurse that “This feels like a second job, can I quit?”

Good news is, is how long do I have to be on this, bad news is, is this brings the oral surgeon back into the picture. Why?

Because of the things I still feel in my face. The crawling sensations. The pain. The spasms. The spots. The sores. Yes, they are going down slowly, but at the same time, the abscesses need to come out. Only problem being, is that mold doesn’t show up on their precious CT or MRI scans. Because my body isn’t reacting to it.

So I left Rebecca telling me that they will shore up a solid game plan. Sorry. This needs to be treated. Aggressively. I’m done with the just enough approach. and said that we will call you back in the afternoon, never happened. So maybe I’ll hear back from them next week. It’s fine. Just do your jobs, and address my concerns.

I got home and was just exhausted. Took my dose of voriconazole, and drifted back into the skewed reality the whole afternoon. I did call Dr. Dobbs’ office, and conveyed what the pathology is showing, and stated the same symptoms. Lumps. Bumps. Yellowish smelly pus. The usual line. But when I told her the pathology, she said that I need to come back. I’ll see Dr. Dobbs again next week. He did prescribe an antifungal, but one that won’t work for what I have. He did it because of my white tongue, and the severe cracking on both sides of my lips. The irritation I just feel in general in my mouth. I’d give it a 0/10. I’ll know more Wednesday.

There was one more appointment left. Dr. Schleve. My most trusted dermatologist that’s not given up since 2016.

As he came in, I handed him the surgical notes from Hepworth, and the pathology. I moved his focus to 100% fungus/mold at this point. The red spots, the sores on the top of my head, the general redness of everything. Lastly the abscesses I feel. They are real.

As he looked at the top of my head, he started to mark me up. I stated, “I think a good idea would be is to take a biopsy”. He agreed. He continued to mark me up, but when he got to the volcano in the back, he decided to punch biopsy that one. He shot my head up with lidocaine, and took the sample and dropped it into the biopsy cup. Before he closed me up, I asked him to swab it for anaerobic/aerobic bacteria, because why not. 2 stitches later and done.

I showed him the spots on my chest, and on my back. There’s this one spot that constantly itches. He decided to blast it with nitrous. Yes it’s cold. Yes it burns. Just sucks. I then asked him to hit the topside of my head. He said he sees the discoloration, but can’t target them because they are too subtle. He said when I come back in 3 weeks, he will look at it again and blast them then. To give them time to grow. Hopefully, if this is what I think it is, the hope is they get even more unnoticeable. Which means it’s fungal.

I really hope I’m nearing the end of this extremely wild ride. I don’t want to go through this again, which is why I am being more direct with doctors.

I’m inspired to push through this now that I have “some” direction, rather than throwing darts at a wall.

More next week.