Getting People to Pay Attention

Sunday night, after getting my labs, I sent all my doctors the same message.

This morning infectious disease acknowledged they got my labs and got this over to Dr Kaufman’s PA. I told them to fax/contact both Dr Hepworth, and Dr Lupo the labs and MRI results and start formulating a game plan.

In short, I’m having to oversee, and hound them now to make sure they are paying attention to what’s going on.

I talked to Soleo this morning, and they said Clarence submitted everything Friday, so I contacted Pfizer Iguide to make sure they got the application, about 2 minutes later, nope. Nothing.

So clearly Clarence didn’t listen. So I called Soleo back and told them Clarence clearly doesn’t know what he’s doing. I gave them the number to Pfizer Iguide, and told Nick to get the procedure, and forms and tell Clarence to get this done. The Pfizer Iguide lady was super nice and said that she will keep an eye out for it and just approve it since I’ve been doing patient assistance with them since 2019. I don’t want to needlessly use my HSA/HRA funds due to the lack of attention. I was smart this year, with the HRA, I get a free $1,500, so I added an additional $1,500 into an HSA so at least that covers me to hit my deductible of $3,100.

Tomorrows IVIg will make me hit my deductible easily. Then it takes 3-4 more infusions and boom, maxed out at $7,100. It’s an intricate dance I’ve learned over the years. I just don’t need surprise bills anymore. I was supposed to go back to my 45g dose this time, but I guess Sarid wants me to go up to 35g before going back to the full dose. They at least upped my infusion rate to 150ml/h, which will make my infusion take about 4 hours. If I tolerated it well (which I know it will go fine), they will let me go up to 200ml/h. I just feel bad that Lisa the new nurse will come and just literally sit & babysit until I’m done.

Kaufmans office called me back to let me know that I gotta go to a labcorp location to get my Posaconazole levels pulled at their official lab, because the past 3 attempts they have tried, they aren’t doing what they are supposed to be doing. So that’s on the list to do sometime this week.

I just feel like lately, all I’m doing is supervising everyone. Making sure they are doing their jobs, correctly. I shouldn’t have to be doing this. You’d think people would be half paying attention, but the medical field in general is just been this way for as long as I’ve known. Feels like a second job. But if this gets them to pay attention, and do the things they need to do, I’ll get to the bottom of why my bloodwork is looking shitty again.

The MRI I had done right before the end of the year found this:

Most radiologists miss a lot, they just look for major things. Later this afternoon, I’m going to review/compare the MRI’s from last week, and the one that was done right before my 2nd mastoidectomy. I’m pretty sure I’ll find some things, and I can help point both Lupo, and Hepworth in the right direction. I know more surgery is coming. It’s obvious just due to what I’ve been feeling in my head, and the crap I continue to get out when I do my sinus rinses. If I can get my max out of pocket met by March, then the surgeries that both Hepworth and Lupo would have to do will cost $0.

I got ADA documents from Sedgwick that I’ll bring with to my appointment with Courtney to have him fill out. The ADA would just cover me from 1/3/2024 to 1/16/2024 for being “out”, and then a workplace accommodation from 1/16/2024 till 1/31/2024 to allow me to work from home.

This just feels like a second job, but I have to do this. If I blindly rely on people to do their jobs, nothing would get done, just delaying things unnecessarily. If I can help push things along to get the care I need to push this infection off of a cliff for good, I’ll do whatever it takes.

I’ve only been in full survival mode since 2021. Again, I still can’t believe it was the apartment the entire time. I talked to Sarid about the mold allergy panel we did 2 weeks ago, I wasn’t surprised with the results. This scale (CoFAR) is 0 being no reactivity to 5, meaning death. Almost every mold known to man, I am at a reactivity scale of 4 for every mold.

This is why I had all those allergic reactions since we moved into Parc at Cherry Creek. If anyone has ever had to use an Epi-Pen knows the rollercoaster you go on. The first 15 minutes feels like you’ve ran a 5k marathon. The next 30 minutes is just an emotional breakdown as your body is “coming down” from the epi shot. So based on the test results of the mold allergy panel, Sarid wrote me this letter:

Dr Sarid is one of the rare doctors I have that goes to bat constantly for me. But this letter will be instrumental to arguing the entire case with this whole mold thing.

It’s easily understood that the mold caused the heart attack. Mold causes mycotoxins. These mycotoxins when released into the bloodstream, the circulatory difficulties stemming from black mold exposure include irregular heartbeat, heart inflammation, internal bleeding, and blood clots.

So it’s a super easy argument. I never had any clotting issues, severe allergy issues, until we moved into this place. The troubling part is all the other doctors invalidated all of my symptoms that I was making all this up.

But I’ve had DVT’s in my right leg, an extremely large clot between my right elbow, to the entrance to my heart. 2 saddled pulmonary embolisms in my lungs, and the latest ESTEMI heart attack where the arteries that feed your hearts muscles were 90% blocked with clots.

Again, I’m just glad I’m alive, and that I never gave up. Advocating constantly that there was something wrong. The missing piece to this huge puzzle was the mold found in my sinuses from surgery last October. At least now I have an answer to what this had been all along.

The property will do what it takes to deny / delay this as much as possible, but inevitably, they will be responsible for everything I had to endure, and I’ll absolutely make sure they pay for it. In more ways than one.