Not Wasting Time Anymore

This morning was infectious disease. I talked about how it was so fucking hard to get on the antifungal posaconazole when I left the hospital. I got 4 days of it. It started to put the fire out in my mouth, face, neck, and ear. Even the top of my head felt better.

When I was discharged, CVS/Caremark decided to deny it. No logic. No anything. Automatically denied. Paula tried doing the prior authorization, which by the way, it seems that CVS/Caremark wants one with ANY medication I take. It just causes unnecessary delays. They denied it again saying that fluconazole would be the one. I’m sorry but if a prescribing doctor says medication A, it should be that. Not what a fucking computer says. So Kaufman put me on Itraconazole instead.

I went without any anti-fungal for almost 2 weeks. My WBC started to climb. I felt horrid. I pulled the 5 alarm fire with infectious disease. But over the weekend, things seemed to calm down. As I had just started Itraconazole. Yes, anti-fungals take a week to really kick in. Especially when taken orally.

Just like the Voriconazole I was originally started on, the heart attack unfortunately forced the Dr’s to change that to posconazole due to Voriconazole interfering with the Statin medications I have to take due to the stents being placed. It took a day for the Voriconazole to leave my system, by day 2 in the ICU my heart felt better. The crazy fluttering / and shortness of breath feelings were pretty scary.

I’ve been on Itraconazole for 2 weeks, but it doesn’t feel like it’s really punching through. Just feels like it will take longer. My impatience is really showing, but at the same time, I should have been on Posaconazole since I left the hospital. Insurance can eat a rock.

So I showed Rebecca the spots all over my head. The cysts behind my jaw, along my jaw, throughout my face. Also told her about what Lupo pulled out of me yesterday, as well as a month ago. Then I shifted to Hepworth pulling out the goop from my left sinus. That’s when I took advantage of all the data, I told Rebecca, that since I’ve been on itraconazole, it doesn’t feel as effective as posaconazole was. since insurance was playing the “use itraconazole first” tactics. There. We did it. Checked that box you fuckers.

As I explained this insurance delay of care, I told her that I need to be switched to posaconazole. I’m tired of playing around with this.

We got onto the topic of my previous Vancomycin trough levels. She said they aren’t high enough. Even though the last lab showed I was “in range”, she wants it higher. So they will be increasing my Vancomycin dose from 1g every 8 hours, to something higher, with the same frequency. They will need to work with Paragon’s PharmD (Pharmacist with a PHD) to calculate my new dose. I’m just glad that they are keeping me on it. I even told her that it’s working. I know it is. It always has.

There was a communication issue with my appointment for today with getting my new port needle. Apparently my appointment was scheduled for midnight lol. So I am just waiting to get in quickly to have my new port needle put in. On Thursdays, after my Vancomycin is finished, I’ll remove the dressing, and pull the port needle out.

I look forward to Thursdays simply because I can take the hottest shower possible and just stand there for an hour. When accessed, I have to have Anies help cover my port with an Aqua Guard, which is basically a piece of plastic with adhesive that covers the area so the dressing won’t get wet.

These things suck tho. Last night it started to fall off in the shower. I didn’t care. It was getting removed tomorrow anyway. It’s just a pain in the ass to use them, and again, you can’t take hot showers with the dressing.

So hopefully between switching the anti-fungal to Posaconazole, and upping my Vancomycin dose, maybe by next week I’ll feel good enough to return to work. Just feels like almost the entire year was lost to all this. I’m just thankful that work is super understanding, and supportive. I can only look forward to 2024 with a little more optimism since I’ve finally gotten the medical attention I’ve been screaming for.

As for the apartment, we noticed the wall where the mold was removed from was really cold. Colder than the other outer walls. I put my hand over the electrical outlet, and could just feel the cold air rolling in. I told Anies last night, that we just need to get the fuck out of there. So today, I’ll be looking at apartments, and making a few calls. At the same time, via ARAG (Legal Insurance / Assistance), an attorney sent a message saying she would like to take the case. Since the other two attorneys haven’t seemed interested, I might just have the conversation with them.

Since the property attempted to “settle” with me the way they did, it’s more appropriate to have them talk to my attorney to actually do a real settlement. Let’s be honest, they were trying to get out of this problem as cheaply as possible. Fixing the wall as cheaply as possible. I’m pretty sure they didn’t replace the insulation appropriately, if at all…

All I am really asking for basically:

A) Get us out of this shit lease ASAP
B) Demand payment for relocation
C) Demand payment for 3 years of med bills
D) Demand payment for 3 years of pain/suffering

It’s that simple. It’s pretty clear that the environmental hazard that they ignored to fix from the beginning, over the summer when they just painted over the rotting siding. Even telling us it’s “safe” for us to return, when there are still levels of mold in the apartment. I can assure you it’s not. Since we’ve returned, I’ve started to feel like shit again. I’m convinced it’s that apartment.

I’m not wasting time anymore, with anything. My health, dealing with the property, etc. Since Ive gotten a little bit of my brain back, and I’m able to think through things again. I have to use the time I have right now to just get this all done.

As my port was accessed today, still won’t return. So we have to use TPA (Cathflow) to try to bust up the clot on the end of the catheter. Looks like today is gonna be a long day :(.

I have to see Sarid @ 1:45pm today, so I’ll go a little early at 1pm to get the labs drawn that Hepworth ordered on Tuesday, and also the labs that I have to get drawn weekly for infectious disease at the same time. Since the Vancomycin trough is time-sensitive, I called ahead to Immunoe to let them know I need them drawn right when I get there. Since Hepworth is doing C3/C4, those labs have to be spun immediately and put on ice. They have a full labcorp setup there, so I’ll just do them all at once. 2 birds with one stone.

Luckily, the TPA worked within 30 minutes. So here’s hoping it stays unclogged for awhile. So we just did the infectious disease labs while I was sitting there. Might as well.

As I got into Sardis office at 1pm, no more I checked in, and they called me into the room. I thought it was a bit early, but I don’t mind. As long as I don’t need to sit next to anyone.

Sarid came in soon after, and I just updated him on the past week. The focus of this visit, was mold. Since he can desensitize me to mold, it’s probably best we get going on it asap. He looked at my old labs that showed the Alternaria sensitivity, but only covered that specific strain. He ordered a full mold panel blood test, and the usual labs. So on Monday when it’s time for ivig, they will pull the labs prior to starting.

He did talk a bit about the treatment, and to sum it up, it’s going to be brutal from a time perspective. From the sounds of it, the first month is just non-stop exposure shots. I’ll be there constantly. Perhaps I’ll wait until next March to do it, once I’m maxed out on insurance. But I guess we will see.

I’m just glad things are finally moving in the right direction for once, on top of that, doctors are all showing their A games now.

It’s what I’ve needed for a long time.