ENT Taking Over

Since my last post, this sinus infection has taken on a whole new level. Between my labs looking like absolute dogshit, and what he visualized yesterday, made me see Hepworth finally come out of his shell.

I got called yesterday from Kristen, Hepworth’s practice manager. She told me things are being put into motion. Apologized for the staff not being responsive (it shouldn’t have taken me calling Dr. Sarid in sheer panic last weekend). It’s really come down to his practice not doing their jobs. Period. I told her as long as I’m getting an appropriate response within 2 days, I’m fine with it. I understand I am not his only patient.

But since the tail end of 2023 came, it was next to impossible to get through to anyone there. Appointments, talking to his MA. Anything. This was me utilizing the proper channels of phone calls, voicemails, portal messages, etc.

Kristen went on to give me updates that Dr. Sarid firstly is looking into the new biologic for COVID prevention. A few weeks back, I get a periodic newsletter from the IDF on immune-related topics, but I rarely read them. Just skim the headlines, that’s about it. When the COVID pandemic was ended officially by the CDC, along with that, Evusheld the monoclonal antibody was no longer available. Why? It was only authorized when COVID was declared a national emergency, and it received authorization during, and only that time.

I was fortunate to get 2 doses of it. It’s most likely what saved my life in late 2021 when I was forced to return to the office. Doses were extremely rare, and hard to come by, but Dr Sarid found some, and made sure I was 1 of 10 patients that got it.

I had asked Sarid about the new monoclonal antibody that was JUST approved by the FDA. It’s called Pemivibart. Instead of 2 IM injections that cover you for 4 months, it’s 1 4.5g IV infusion. Unlike Evusheld, Pemivibart covers all the latest strains, and the treatment lasts the same, 3-4 months. This will keep me more confident being around people who choose to not stay home when sick. All I need right now is yet another round of COVID. So Sarid will find how to obtain it, once we figure that part out, I’ll have that extra protection, as you’re all well aware, my body doesn’t create antibodies. Yes, I do get “some” protection from IVIg, but it’s up to the donors to get either vaccinated, or have had COVID in the past.

The second update Kristen gave me was a call between Sarid and Hepworth happened. She offered an appointment with Hepworth yesterday. I absolutely took it. I asked Anies if she could come with for this one, not only for moral support, but to back me up about the blackout session I had 3 weeks ago in the kitchen.

I woke up early yesterday. Miserable as hell. Was running a fever. I felt like shit. Thankfully it was a WFH day so I didn’t have to spend half of my energy getting ready to go into the office. The longer this has taken its toll on me, the less rest I’m getting. My body is definitely telling me everything’s wrong. From the night sweats, aches like I’ve got the flu, immense pain in my face and mouth. I am luck at this point to sleep past 5am. I feel bad because once I get up, I try to stay as quiet as I can, but now Anies is waking up too. As 7:30am hit, I printed off the last labs I had done, as well as the HSV-1 culture results, and brought them with.

I could easily tell as he walked into the room he was well prepared to discuss the plan of attack. I don’t have to explain myself anymore to him. Or Sarid. Just the current status of things. I gave him the quick run down, his MA took my labs. Which he reviewed/highlighted the important parts. I also told him that my WBC has been between 15-20 for almost 2 months now, and that the “issues” with infectious disease has really caused the main delay in getting proper treatment.

I asked him to just take point on this going forward. I’m tired of stupid infectious disease doctors that in reality, don’t do shit. They just gatekeep the antibiotics I need. Since Hepworth is a surgical ENT, he can order everything I need, and have Soleo source what we think will work moving forward. Kaufman will just be used for opinions. I told him that I do not want to directly interact with ANY infectious disease doctor moving forward since they aren’t looking out for me, and my best interests.

Just like 2 weeks before, my sinuses are all inflamed, but it’s backed off “some”. However, as he grabbed the endoscope, he hit me with Tetracaine “cocaines cousin” as he called it. The minute he hit me on the right side, I hunched over trying to pull myself together. Holy shit did it hurt. It BURNED. Any local anesthetic plus infection just amplifies it. About a minute later I had enough composure to sit up and let him look. Ears obviously fine.

Sinuses however, looked worse. He stopped and turned my chair so I could see. As he advanced via the right side, up close near the sphenoid, he could easily visualize pus contained within the mucosa. He pointed out what it was and where. Guess what, it’s everywhere. So he started up the suction and tried to clear out as much as he could get from the right side. When switching to the left, he advanced. Saw the same thing, however, the left side of the sphenoid drainage hole was open enough for him to suction, so he grabbed a culture capture device, and pulled a massive amount of crud out. He suctioned for a good 2 minutes. As he pulled the endoscope out he immediately offered me some tissues because I knew I was bleeding. I could easily feel it even with how numb I was from the Tetracaine.

He then sat down, and we started to talk about how do we attack this. How do we permanently rid my face of this shit. The obvious approach is going back on IV antibiotics. It’s the reason I have the port. We discussed either Vancomycin, Gentamicin, Tobramycin, and another. Basically 2 approaches at once. IV, and topical. Whether we get a powdered form, or a gel-like form. We hit it from every angle. There’s clearly an infection. This is the 5th time we have pulled a considerable amount out. This was probably the most/worst it’s been though however.

Cultures typically take a week for bacterial, but for fungal, up to 3 weeks. Which hopefully by next week, from a preliminary standpoint the bacterial portion of the culture will be available, the fungal aspect we will just have to wait on. Seeing my tongue black, and everything that’s going on in the mucosal lining of all my sinuses indicates it’s both bacterial, and fungal. The hope is that we get “something” to direct us on which one to go with. I am on the strongest anti-fungal with the broadest coverage. So it’s a matter of do we go with Gentamicin or Tobramycin.

I’ve been using the Tobramycin drops in my eyes which does seem to give some sort of relief from the optho side, but at the end of the day we have a plan of attack. Infectious disease is out, Hepworth is now going to carry this across the finish line. I did discuss with him at length the disgust I’ve had with Kaufman and her entire office. It’s a well-known fact that anything Hepworth says is constantly deflected by ANY infectious disease doctor here in Colorado. He said he will call me in about a week to figure out what we are going to do, I just need to “hang in there” the best I can until then.

Surgical intervention will do us no good at this point since all my sinuses are “open” the best they can be (minus the sphenoid), so if I gotta come every week for sinus irrigations or whatever. So be it. I just need relief at this point. I’ve suffered enough through all this. Infectious disease was in reality, a waste of time.

We left, I felt a little better, but at the same time just worn out. No energy left. Again. It’s good that it’s a WFH day.

I looked on my calendar the night before and noticed that I forgot to schedule my Ketamine for this weekend. Saturdays at Klarisana typically fill fast. The nice part is I can just text them. Thankfully, they had 3 spots open, so I’ll be “gone” on Saturday @ 12:30pm. Every little thing I can do helps.

So for now it’s just survive until next week.