Dr. Lupo / Dr. Hepworth Appointments and Updates

Yesterday I had a follow up with Dr. Lupo who is the ENT who has been managing the Mastoiditis over the last 2 years. As I’ve said before, he’s one of my favorite doctors. I always look forward to my appointments with him.

During my stay at Swedish for the heart attack, an MRI of my head was done, and from my left ear, the radiologist just commented about “post-surgical” changes. Which realistically is just a generic comment. In the past, this hasn’t meant very good things. Simply because after the 1st Mastoidectomy in 2022, I had 3 MRI’s between the surgery, and what led to the eventual 2nd revision Mastoidectomy I had to have in June of this year.

The MRI’s just commented about “post-surgical” changes. But what I was feeling wasn’t that. The recovery from the first Mastoidectomy wasn’t easy. The constant popping, pressure, and pain was extremely difficult to deal with. The strange feelings in my head that I would have the months following the surgery. It took almost 10 weeks to get all this to sort of get under control, but the one thing that was constantly happening, was that I was getting these granules out of the surgical area. It was literal sand that would come out behind my ear, out of my earlobe, and surrounding area.

It truly was unexplainable. It was so painful. I would just feel these granules pushing through my head and ear in a constant basis. As 2023 came, the antibiotics just weren’t helping. It just seemed like this was all becoming a lost cause. End of April 2023, my sinuses were starting to bleed again. I was getting this brownish gunk out. My ear was ringing constantly. The strange feelings started to sweep from the left side of my face, to the top of my head. I also couldn’t stop itching the top of my head. It felt like everything was crawling. I went back to Dr Courtney, my GP, and showed him the swelling on the left side of my head, and that we need to do another MRI. This MRI clearly showed the “post-operative” changes weren’t that. The infection was back, and it was big. When I saw the imaging, I didn’t need to wait for the Radiologist to read it, I headed back to Lupo right away, and texted Hepworth that something was really wrong.

Lupo got me in at the end of May, and I told him straight up, either hospitalize me, or I’m going to push for it through the ER. At this point I was fucking miserable. He hospitalized me, and performed the second Mastoidectomy June 1st. I felt like I won the lottery. But I wasn’t prepared for what followed. The pain right after surgery was the worst I’ve ever felt.

So my appointment yesterday felt like earlier this year. Where my ear is starting to hurt more. My hearing is starting to go the other way. The pus/granules continuing to come out of the surgery site, earlobe, and the back of my ear. Knowing what the MRI says, I’m starting to worry.

Dr Lupo came in, and just as he always does, he dives right in. He doesn’t waste time. As I was laid back in the chair, he could see the granules/pus coming out of the incision site, and my ear. He grabbed his tools, and started to pick away, and remove them. We spent a good 20 minutes just getting everything out. Yeah it hurt, but I don’t want this shit in my head anymore. I’ve been dealing with this for way too long.

After removing everything, we spoke about next steps. The main concern being the MRI looking awfully familiar, my WBC going back up, and just how I just feel in general. I’ll see Dr Lupo again on the 28th.

This morning, as I got up to start my Vancomycin, I got lab results back from my quick pit stop to infectious disease on Monday. My WBC is trending downward. Previously, I was at 16.1, it’s now down to 11.3. Which is a good thing. The only thing I can attribute the rise in my counts would be the fact that I was off any antifungal for almost 2 weeks while insurance played their games with the posaconazole. I literally just started the Itraconazole last week. So it’s gotta be that.

I met with Dr Hepworth this morning, this time Anies wasn’t able to come with, so I was a little antsy. It’s always nice having her there to “oversee” the appointment. After updating his MA, he came in. He seemed like he was in a good mood as he walked in, so that sort of took the edge off. Just like Dr Lupo, Hepworth doesn’t waste any time. He immediately went for the endoscope and turned my chair. We had a compressed conversation about where we are at with infectious disease, that they are now fully paying attention to me post heart attack. I also quickly told him about the appointment with Lupo and what he did. Usually he starts out by checking ears, then the not so fun part.

If anyone has been to the ENT, and needed an endoscope, you know how much it sucks. An endoscope is a device used by ENT’s to examine your sinuses. It’s a small thin metal tool that has a camera and light on the end of it. As he started on the right side, checking everything, he said the right side looks really good. The left side however, not so much. As he went into the left side, he didn’t get too far and started to see problems. He started to talk about this white cloudy “stuff” coming from the maxillary, which is the sinus behind your cheek and nose. He wanted to examine further, so I had to just relax and focus on my breathing. As he pushed the endoscope further, the more uncomfortable it became.

He then withdrew the endoscope, then started to grab his suction tool, and pulled out a culture collection cup. I knew things were going to get uncomfortable quick. His MA usually offers the lidocaine spray, but I always skip it. It’s never worth it. It tastes like shit, I hate the feeling of being numb, and also I feel gaggy afterwards, so I just skip it. Again, to me, it’s not worth it.

Once he got everything attached, he went back in and started to remove all of the gunk, he did remove a considerable amount. Good thing I didn’t do my sinus rinses yet. Hopefully we will be able to figure out what this is, since I’m constantly blowing out this white crap. He spent a good 10 minutes getting everything as best he could.

We then began to talk about the cysts in my face neck and mouth. I told him that they have been burning, feeling more inflamed. I gently asked about the debridement, and he said he’d like to see what the itraconazole does for a few weeks, but agreed that we may need to go in and get it out. He then mentioned an MRI, and I told him about the one at noon. He said “wait”. I told him that’s fine, whatever he feels is right. I do trust Dr Hepworth. I’m not going to argue with him for the most part, since he’s been the most helpful throughout the past few years. I did try to impress on him, that the past 3 years have mostly been driven by mold exposure. He did agree for the most part. He wanted to see pathology, so I told him that PSL are the ones that have all that, so his MA will get that over to him.

Finally he wants me to worth with Dr Sarid on trying to desensitize me to mold. Pretty sure it’s just a series of allergy shots meant to help my immune system try to wake up to it, but I don’t think it will do much due to the genetic stuff indicating my body won’t do much for mold. It’s worth a shot though. He ordered a few labs, and that was it.

As I got out of the chair, I started bleeding from my sinuses. I could feel it coming so I scrambled for some tissues. After a reluctant gentle blow, it wouldn’t stop. After about 10 minutes it stopped. Keep in mind, I’m on blood thinners, so this is expected.

As I drove home, I called infectious disease about Hepworth’s recommendation on moving the MRI. They were ok with it. So since I got them on board, I had to call Health Images to get them to move the MRI. Since they are ordered as STAT, she was reluctant to move them, and had to call infectious disease to get the ok. She came back in a few minutes and got the MRI’s rescheduled for 12/26.

I’m now exhausted for the rest of the day. I’m still struggling with the recovery from the heart attack. My energy levels are still low, however, I’m at least able to get out and do a few tasks on my own. Again, I know this isn’t a race, and I have to give this time. Since Monday, I started the Marvel marathon of every Marvel movie starting off with Captain America First Avenger all the way to current. Yes, I do skip a few movies, Captain Marvel being the first (because it’s just a bad movie), Hulk, and Iron Man 3 (again, terrible fucking movie). I’m currently on Black Widow. So I’ve got a ways to go :), but what else am I gonna do?

Sedgwick is still working on my FMLA/STD claim, I did reach out to HR to have them get an update. I guess they have everything they need, so more or less I’m just waiting for them to give the thumbs up.

Outside of that, the remainder of the week is IVIg and just stay on top of medications, and sleep. Nothing exciting. I did reschedule pain management. I still have a good amount of dilaudid so I should be ok for the next week or two.

I’m just tired of being tired. Sick of being sick. My impatience is clearly showing more and more each day with all this. Seeing as how I’ve had to literally endure non stop bullshit since 2018. It is finally nice though, to get the proper attention I’ve been screaming for, I just wish this would move a little faster.