Since the surgery on 5/22, shit has just been upside down. For starters I’m in a severely shitty mood to start. It’s just the culmination of frustration with “the system”. It’s truly tiring to deal with our medical system. I feel like I am a product of its failure or success depending on which angle you want to look at it from.
After the second post op appointment, I discovered that by 5/28 they had preliminary results of the cultures and pathology from the contents they scraped out of my face. Playing it off like it was nothing I looked at the report that said “staph”.
What. The. Actual. Fuck.
The one pathogen my body cannot fight has been harboring itself in my face for probably a greater portion of a year. Let’s rewind back to Fred.
The surgery that took 4 hours. 7 procedures. And 1 miserable recovery. There was “polyploid matter” that was drained from my left sinus. Mistakes were made. The contents removed from my surgery was not sent for cultures. Only labs. Fucking seriously.
So now let’s live in the present as I stare down at this piece of paper saying “staph”. A million emotions channeled through my head, and I looked up to the doctor and said “that’s funny, I went to the ER a week before my surgery and I was going septic again and they gave me Vancomycin. That drug has saved me countless times. What’s interesting about this “staph” infection, is the kind you do not want. It’s the resistant kind. Report lists it as coagulase-negative. Long story short, this bacteria is resistant to almost everything on the planet except for Vancomycin (I know right), Linezolid, and a few other IV only medications.
So with that knowledge now you can understand my disgusting frustration at how I have been mishandled through the medical system. Now. Outside of my immunologist and Mayo, it’s been a fucking disaster. Nobody uses facts. Just a whatever attitude.
So the first words out of my mouth was why am I not being placed on Vancomycin to eradicate whatever is left in my face. I just received the typical stare back with the predisposition of “I’m the doctor”. It’s just fucking retarded that doctors do not listen. They don’t care. They really don’t. They don’t want to spend time nor invest anymore of themselves than is absolutely necessary. The doctor says, “Well I can give you Clindamycin nasal wash”. I replied back with “you do realize that medication is highly resistive against that strain”. That’s when the appointment ended. I got a copy of the preliminary report and was sent on my way.
I continue to feel like absolute shit. My face still burns. I’m still having the swallowing issues that still come and go. But here I sit with an antibiotic that clearly won’t do anything.
I have leftover linezolid. Only 5 days worth of pills. Which by the way costs $3,200 for a 10 day course.
I have reached out to the infectious disease doctor that was helping me earlier this year as well as pulled the 5 alarm fire with Mayo. I’m just frustrated. And tired. Really tired.
If you want to see the before / after:
I can only assume the redness is the bacteria just coming out everywhere. The spots have lessened, however, they still come and go. Same places.
On the immunology front, I will be transitioning to SCIg in August. At least I won’t have to go sit at an infusion center for 4 hours during the week. I am unsure on which brand I will be transitioning to, but it will probably be Civitru or Hizentra. This will allow my arms and veins to heal somewhat. Since my hospitalization back in 2018, I’ve probably had over 150 IV’s stuck anywhere possible.
Earlier this week I went to the dental implantologist who did my implants as I was having some strange feelings in my mouth near the implants. Bone spurs. Which he won’t address. When asked about getting the lower implant replaced and the upper implants done the response was “I’m uncomfortable with proceeding right now with any procedure”. Translation. I’m not going to help you because of all the problems that occurred. So I will either go with the oral surgeon who has been helping me along the way, or a different oral surgeon.
/rant
Discover more from A Journey of “Do No Harm”
Subscribe to get the latest posts sent to your email.