Reunited with Hepworth and Updates

Can’t begin this post without talking about post-Mayo. This morning I woke up to an email from Dr. Joshi requesting that I come off all antifungals, and that everything seems to be ok. More on that later.

Yesterday, I was able to re-establish care with Dr. Hepworth’s office. It’s been 6 months since he split from Veros, and off on his own. To my surprise, as I walked in, a familiar face was in the room. Alison. His old PA that got me to see Sarid, and fast-track me to see Dr. Hepworth in 2019 about getting the tumor removed. It was really great to see her.

So I saw both of Dr Hepworth’s PA’s, Sarah, and Alison. I caught them both up over what’s been going on, and how things have been going. Trying to keep the focus on the fungal infection, which was extremely easy to see.

I explained to them both about when I went off of the Posaconazole, and my WBC’s shooting up to almost 19. When I got lucky, and had that refill @ Walgreens, over the span of 30 days, my WBC went down to 13. By the time I hit Mayo, it was 12.5. As of last week its down to 11. So as I explained the letter from infectious disease, and what Dr. Hepworth and I discussed, that I only want him treating this fungal infection. He’s realistically the only one taking me seriously.

As Sarah grabbed the endoscope, I knew she was gonna see something. When Mayo’s ENT group scoped me, they ONLY looked in my sinuses, but only direct. They didn’t use the 90 degree turn on the endoscope, nor advance all the way up to the frontal sinus cavities, nor look at my Sphenoid. The other thing they were supposed to do, was look at my tongue, the upper backside of my throat, and the lower portion of my throat, where the esophagus starts and my voice box.

Needless to say Mayo missed A LOT. But again I am not surprised. They seem to think just like the UC Health records say that “I’m making all this up”. Sarah visualized a serious amount of fungal debris in my right frontal sinus, and right maxillary. When she looked in my throat, my entire backside of my throat is just brownish/black. This extends from the beginning of my esophagus, and all the way down to my voicebox.

1000% proof this is fungal, and its everywhere. They even took pictures to document it. There was no begging needed. Both Sarah and Alison immediately agreed I have a severe deep-rooted fungal infection. That I need to stay on the posaconazole for quite some time. They also added Nystatin, and agreed that the anti-fungal sinus rinse Mayo gave me will absolutely help.

They both promised me that they would talk to Dr. Hepworth, and that I am to return Dec 23rd to see how I am progressing. I also brought up the swelling in my face, as well as the cysts in my neck and mouth. Sarah didn’t hesitate to snap the gloves on and feel them. She counted over 19 cysts all over my neck, the entire outside of my jaw being inflamed and having a ton of cysts in my mouth, and under my tongue.

I also showed them what I can do where I can push the pus out of the salivary ducts. I just like it that it’s me showing them proof, instead of trying to explain myself like I had to while I was at Mayo. It’s just nice to have Hepworth and his team back in my core care group. I know I am in good hands. Since 2019, he’s saved my life at least 5 times, between the tumor removal in 2019 (RIP Fred), the massive sinus infection that was in my entire face, both Sialendoscopies, and removing that fungal abscess at the tail end of 2023.

He also was the one who found me Dr. Lupo who did the same thing twice, the first mastoidecomy in 2022, and the second in 2023. That was probably the worst infection to date that I ever had to deal with. Although there was a trade, I did lose 60% of my hearing in my left ear. My entire low range is absolutely gone.

Luckily a few weeks ago, Apple released one of the best features of their AirPod Pro’s, the hearing aid functionality. When I use them, I can actually hear what people are saying now, instead of reading lips, or guessing what they are saying.

So when Dr. Joshi messaged me about pulling me off all anti-fungal treatment, I responded with all the findings that were seen during my hour and a half long visit @ Hepworth’s office. I scanned in the sheet they hand out which shows everything they found, and what the care plan is. What’s strange in all of this, my first initial visit with Dr. Joshi, she 100% agreed I needed to stay on Posaconazole for the rest of my life, then the infectious disease doctor said the complete opposite. Now that she is saying the same thing as him, this only tells me he talked to her. It’s sad. Truly.

I politely explained to her that this was missed by Mayo ENT. All they did was look at my sinuses, these guys looked in every nook and cranny (that I have left), and also looked thoroughly at my throat. Even I could see how bad it was because there is a TV that shows the camera output. It’s definitely bad, but it explains the constant gagging, throwing up, having no appetite (yes I now weigh 140lbs). I went on to tell Dr. Joshi that this is what Infectious Disease wanted to do. I reminded her that when I went off of the antifungals, that my WBC shot up to 18, and I was miserable.

I’m not going back that way again… sorry. But like I said, I politely told her why its a bad idea, and that I will continue the antifungals in the hope by Dec 23rd its cleared up as most as it can be. I also reminded her of the Black Mold exposure. The one thing she did mention is my T cell function (Kill side of your immune system) is working fine, and it should be able to handle this. What she keeps forgetting, is that I have CVID, with B cell abnormalities and function.

Any of the B cells my body produces just don’t work, it’s definitely not enough, and they don’t work as intended. Every IVIG infusion I do, it feels like my body turns on, and starts fighting. Sorry, but I’m gonna stick with what is working for me. Taking me off of anything I am on right now, would most likely make me incredibly sick, and put me back in the hospital. The one place I DON’T want to be.

In other news the MRI came back showing that the L1 disc is just out of place. No ruptures, no tears, no need for surgery. They did indicate that from L1 to L5, my spine is extremely out of alignment, which Dr. Lovett (My Chiro) can put it back where it belongs. He’s a really good Chiro, probably the best I’ve ever gone to.

The adjustments don’t hurt as much as they used to, so I am making good progress there, although its still murder when I have to stand/twist to the left while he guns my lower spine back into place. It will be worth it in the end.

Unfortunately Aggie got the Flu this week, so I stayed home to help her get better. As per usual, yup, I picked it up from her. I’m just hoping it doesn’t stick around too long. I did pick up some COVID tests for her, however, the 2 she has taken, have been negative, so that’s a plus. I definitely don’t need any surprise ER visits or hospitalizations right now.

I looked at my vacation balances at work, and I actually have 100 hours of vacation time. I am almost done repaying back all the sick time used during the STEMI from last year, so when 2025 hits, I’ll start to accrue sick time again.

From a financial standpoint, our trip to Mayo hurt. Between the hotel costs, and fuel to get us there and back, that trip easily cost us $1500. I really could use some more help with the gofundme so I can dump some of that debt off. Luckily January is a triple paycheck month, and hopefully our bonuses at work come in February around the usual time. This $1500 a month in interest is just killing us :(.