When Does This All End?

Since 2015, things have just slowly deteriorated to the point of where I am at today.

Last year after getting COVID, really put the pressure on. As I sat at PSL, I pled again to infectious disease to only be treated as a crazy lunatic. It’s quite sad how the American medical system treats patients who have real problems. Their real solutions is to just keep us sick. Why?

Money. There is no incentive to cure, or heal. Just “manage”. As the pus has continued to come out of my neck, face, mouth, ears, still ignored. Yes. My bloodwork shows nothing. But why aren’t physical symptoms being considered? At all.

As I got out of the hospital, 2 weeks prior, I had an MRI done. Yep. Fired my 7th GP. But something is different with this new guy. He came in with a few sheets of paper. Started to tell me how he’s going to help. And to my surprise, he did something no other doctor has done before. He started writing notes. And just listened as I told him how I got to where I’m at. His questions were short, but they were to the point. Investigative. Then that’s when I showed him the pus. His interest went through the roof.

After I showed him, he was 100% invested. Ordered an MRI of my face/neck. Since I told him it’s the only imaging that yields any sort of insight into what’s going on. Here’s a doctor that’s just willing to try, look. It’s much more than Mayo offered me. He also sent everything off for culture that I produced, which didn’t yield anything (not surprised).

As the MRI came back and was read. Of course the usual radiologist did the read. I swear this guy puts 0 effort in anytime he sees my scans. But just as the past scans, I still see something consistent. In my left mastoid. It’s been there since 2018. Even UC Health commented on it, but the GP took 0 action to investigate further. I already had an appointment with Dr. Hepworth set. The more I looked at the imaging, the more this has progressed since then. I also noticed enhancement along my jawline, as well as my cheeks, neck and face. It was subtle, but was there.

At my appointment with Hepworth, something was different than the last time I met with him. My anxiety of that appointment was through the roof. He’s the only real doctor that’s helped me. Just like the new GP, I showed him the pus. He immediately snapped on his gloves and did a very thorough and painful exam. As he pushed on my sublingual salivary glands it all just started to come out. It was the most disgusting thing I’ve had to experience to date. After the exam I told him about the MRI. He told his MA to go get his laptop.

As he logged in, and looked, he turned to both me and the wife and said that this is serious. I showed him the areas of concern and said this was 100% infection. The past 4 years I’ve felt like a broken record with every doctor. Actinomyces. He agreed that this is most likely the culprit of all of my problems. But he would need help of another ENT to address the ear portion. He said that he would do a co-surgery with him so that we can hit this all at once. He said that he would handle the sialendoscopy and Dr Lupo would handle the ear portion. I asked Dr Hepworth for Rocephin, to which he put 2g in my butt and sent us on our way.

I left that appointment feeling vindicated. Acknowledged. Heard. Finally a direction instead of just standing still.

The next day I contacted Dr Lupo’s office and got an appointment within a week. I was surprised. With Hepworth it takes 3+ months to get in. His office was right next door to Swedish, familiar territory. Pretty much the only hospital I go to anymore. As I went up in the elevator, the anxiety of seeing a new doctor set in.

After filling out all the intake paperwork, I was met with one of the Audiologists. I haven’t had a hearing test done since probably grade school. As the test was conducted, the right side was fine. No problems. Could hear every beep. When we switched to the left, that’s when even the Audiologist started to worry that maybe the equipment wasn’t working. As I sat there, I heard nothing. The entire bottom end of my hearing was gone. Just the high end was somewhat there. After that test, we moved to the pressure test. Right side no problem, left side, immediate murder. It hurt so much I yanked out the earplug.

Then I was sat in an exam room. I waited about 20-30 minutes. I’ve got plenty of patience. I can wait. That’s when Dr Lupo came through the door. And was met with a firm handshake. As he sat down he started to discuss the MRI and what he sees. Just like Hepworth, I showed him the areas of concern. He started to explain that I really do have Mastoiditis. And that there are 2 approaches, minimal vs invasive surgery. 1 option would be to place plugs into my ear where the mastoid cavity can ultimately “breathe” and allow the pressure to be released. Option 2 was a mastoidectomy. After he gave the 2 options I told him that I think we need to go the mastoidectomy route and he agreed. Since this was going to be a joint surgery he would have to work with Hepworths office to find a date.

About 2 days later I was given a date. 7/15. It was so different having things communicated clearly and concisely. Lupo’s surgery scheduler was on her A game. But it’s May. So I’ll just have to endure all of this till then. At this point, morphine was of no real use anymore. Pain management agreed to move me to dilaudid. Finally, I’m getting somewhere.

As the weeks went by, I was counting down the days. I spent most of it researching the mastoidectomy. The recovery. What to expect. The usual stuff I do. I also looked at the sialendoscopy, but there wasn’t much detail about it since it’s relatively “new”. The more I read, the more involved the mastoidectomy is. Basically they put a hole behind your ear, and scoop out the stuff.

As the surgery date got closer, the downward spiral began. It became extremely difficult to do full days at work. And since COVID was still a thing in Colorado, going into the office was something I really didn’t want to do. I reached out to my immunologist to talk about infection concerns, and if he would be willing to support an ADA request at work. Since the surgery is coming up, I didn’t need to get round 2 of COVID. Since the 1st round was such a shitshow. I worked with HR to work from home until surgery, but instead they gave me a private office to work from. Which I guess is fine. Just shut the door and try to do the best I can.

About a week before the surgery, Hepworths surgery scheduler called. My heart immediately sank. They weren’t able to find the proper tool to do Hepworths portion of the surgery. Up until this point, I had my short term disability paperwork completed, arrangements made. Lots of time and effort went into making sure I dotted every I and crossed every T.

When she used the word reschedule, I lost it. How do you schedule surgery somewhere without securing a vital piece of the surgery. My mind started to race. What the actual fuck. I then told her that the mastoidectomy is going to happen with or without Hepworth. She was quite rude. Became defensive, but I was right. I had the right to be upset. I emailed Lupo’s surgery scheduler immediately after the call, and she reassured me that the mastoidectomy isn’t contingent on Hepworths office fuckup. This triggered the worst anxiety ever. I couldn’t control it anymore. After quitting smoking since 2018, I started again. But told myself this is just temporary.

Waking up at 4am knowing what’s about to happen isn’t an easy feeling. This is what, surgery #5? I should be used to this. Loss of control is the worst feeling ever, for me anyways.

As we got to Swedish, got checked in, armbands on, IV’s in, the dread started to hit. As we waited an hour, I asked the nurse to have the anesthesiologist prepare versed. Versed is a fucking miracle drug btw. Once it hits, 0 fucks given.

After signing all the consents, meeting with everyone, the Versed was in, and I hugged Aggie so hard. She has been my rock. She’s been with me every step of the way. And with that, it was off to the OR. By the time I got to the table the Versed was hitting hard. All I remember is moving over to the table and that’s it. Lights out for 3 hours.

When I awoke, and was finally aware of what the fuck is going on, my friend pain reminded me that this isn’t over. Holy fuck. It was the worst. I woke up with a compression bandage around my head. I immediately asked them for Fentanyl. As I woke up more, the nausea and pain was hitting me like a fucking truck. It felt like I was in a kayak in the middle of the Atlantic. After an hour in, recovery, the Fentanyl got me to the point where “it was under control”.

The ride home was even worse. Motion make me so sick. The shit sloshing around in my ear. Walking up the stairs to the apartment almost felt impossible. Probably took me 15 minutes. Step by step. Once we got into the apartment, as usual we were met by our kids Venus and Athena. Aggie got me to the couch and I passed out. Little did I know this is where I would be for 2+ weeks.

The recovery was slow, painful, and nauseating. Every hour that went by, pop pop pop. My ear felt like a popcorn maker. But it’s July in Colorado. It’s the time of the season where the weather is extremely turbulent. I felt EVERY SINGLE THUNDERSTORM. It was almost like I got a barometer installed in my head.

After 2 weeks, my short term disability company was like “oh 2 weeks is enough time”. I thought to myself, no fucking way ANYONE can recover from this in 2 weeks. I went to 3 diff doctors and got the extension paperwork done. Still have to do the sialendoscopy. Finally approved, I could rest easy.

Hepworths office called saying mid August. Fine. Whatever. I’m just over it at this point. But time moved slow afterwards. After the mastoidectomy, it was almost like a demon was awoken. My face hurt so fucking bad. The cysts were so painful. The pus became more and more frequent. I guess I’ll just have to do what I always do, endure.

The checkups with Lupo went ok for the most part. Pus was coming out of the incision site frequently. But no cultures were done. Just remove and move on. After about 6 weeks, I finally started getting my hearing back. The popping was done for the most part. But something was different. I couldn’t feel the pressure changes anymore. Progress.

At this point pain management has maximized my dilaudid dose. This shit is painful. This would be fine if it was my foot, or hand. There’s no escaping face pain. It’s the absolute worst.

The sialendoscopy was only supposed to be a 30 minute procedure. It turned out to be over 2 hours. Ever since salivary gland & duct was seized shut. Dr Hepworth called it concrete. He said it was extremely hard to remove. But when I awoke he was right there waiting for me to wake up. And the words came out. Disseminated Cervicofacial Actinomycosis.

Finally

I proved everyone wrong. Again. We tried a few different oral antibiotics but nothing worked. Hepworth finally ordered a picc line, and I started doing IV antibiotics. But the dosing wasn’t right. It took about 2 months to convince him, and the dose was slowly adjusted.

By December I’m still not getting better. The IV antibiotics don’t seem to be doing much. He then suggested I see this new doctor that specializes in co-infections. Ok. I guess. I was able to get an intake appointment with his PA pretty quickly, but to see Dr Naylor would be, you guessed it, a wait. One thing that was the primary focus was the possibility of Lyme disease. We spent over 2 hours talking about possibilities. She ordered an extensive Lyme test, but not a CDC one.

2023

By now I’m still miserable. Antibiotics make me feel like absolute shit. Every bone and muscle in my body ached. Everything hurt. The results came back from the Lyme test. Positive.

I was floored. What the fuck. Lyme!? What the fuck, let’s just add more shit to my plate. But what changed here was when I met Dr Naylor. His positivity was a welcome change. He took over the picc line from Hepworth, but man I gotta say, it’s the most misery I’ve ever experienced.

Between the new antibiotics, and herbal stuff I was taking I felt so sick. It was so hard to move. But something was off. My left ear. It started to hurt every time I did my antibiotics, or immuglobulin. It started to feel just like it did prior to the mastoidectomy. It got to the point where I caved and went to the ER. Of course they won’t do an MRI, just a CT. Which surprisingly showed residual fluid in my left mastoid. The next day I got a same day appointment with Lupo. He reviewed it, but was confident that it’s just healing. Scar tissue in the bone.

As 2 months passed, we are at April’ish now. My ear is not getting any better. Dr Naylor has increased the ceftriaxone to 2g daily. It was like I threw away the past 2 months of work. Right back to square 1. My face is starting to crawl again. My ear just fucking hurts. Everything is going back the other way. I had yet another appointment with Hepworth.

Aggie has to come with to every appointment now. For support and to also be there to help advocate as to what’s going on. As we sat and discussed where I’m at, I asked him for another MRI to look at my face and mastoid. But this was an emergency MRI. The pus is still coming out of my face. Under my tongue. It was like the past 2 years didn’t happen.

The results of the scan showed yet another infection. Both in my left mastoid, and face. During the exam, he felt all of the abscesses under he left side of my face. And I’m swollen again. Everywhere. He started to talk surgery. Again. But he would talk to me again in 2 weeks. As I was walking out he called me back again. Do you have my number? “No”. He gave me his cell number. Oh boy. Uhh. I don’t think this is a good idea knowing me. I took his number and we left.

As the pain came back I contacted Lupo for another appointment, but couldn’t get in for 2 weeks. Which would sort of line up with Hepworth since we are “going that way again”. The rocephin at this point is just holding off this shit from going nuclear. The septic feelings started to come back. The downward spiral begins yet again. I called Lupo’s after hour number as things got worse. A week later he called me directly. We spent an hour talking on the phone.

As May 31st hits, I’m done. I’m miserable. I’m ready to just throw the fucking towel in at this point. Whatever this is, is winning, and nothing I do helps.

My appointment with Lupo is today. But I took a different approach. I packed my backpack as if I was going to the hospital. As I told Lupo as he came in there’s 1 of 2 things that are gonna happen today. Either I get admitted via him until surgery happens, or I walk into the ER demanding to be admitted. As we spoke the week prior, things have gotten worse. I’ve lost all the hearing in my left ear again, the hotspots on the MRI really showed that this wasn’t reactive from the previous surgery, it was the infection finding “a new home”

I had 2 choices at this point, either a canal wall down mastoidectomy, or revision. Option 1 isn’t the best. As they create a hole in your ear which opens up the mastoid space completely. This would require constant appointments with him to clean out. I could never go swimming again. Lots of negatives. 2nd option, was to remove the entire left mastoid process so it couldn’t hide anywhere anymore.

Option 2 is the only way forward. He began to write a ton of stuff down, then excused himself. He was gone for about 15 minutes. He came back and said, how’s 6am tomorrow sound? I was elated. Thank fucking god the planets aligned. He then said that his surgery scheduler was working on a direct admit to Swedish, and to wait for about an hour.

I probably smoked an entire pack of cigarettes as the stress hit me. I told my boss what was going on. He reassured me everything will be ok.

I walked into Swedish, got my armband, took all my paperwork, and walked to my room. A strange relief set over me as I got to the floor, but was removed when I stood around for 40+ minutes with nobody helping me.

Finally I just looked at my paperwork to see what room I was assigned, walked in, unpacked, changed, then put on my call light.

The nurse had no idea I was coming. After the intake questions I was finally admitted. I met with the hospitalist and went over antibiotics, pain management, my immune deficiency. Then my most unfavorite words came out of his mouth. Infectious Disease. I told him my experience with them, and the doctors name. He said that he would have someone else come.

After that, I got my laptop open, and opened another short term disability claim knowing this is going to be a very long recovery process.

Which by the way are the same fucking people that called me crazy.

As the night went on, Aggie came to hang out. I’m so glad she was there. It felt better knowing I was going at this alone. Then infectious disease walked through the door. And things changed. I went over everything since 2018, being called crazy. What antibiotics work, which ones don’t. I could feel the anger building up inside. Aggie then exploded. Now this doctor is getting it from 2 people. 2 very frustrated people.

Reluctantly she agreed to everything. Finally. Vancomycin. The IV drug that works. After the surgery, I would stay in the hospital and be put in it. Finally. I’m being heard. Later that night, the nurse came in and said that my surgery time has moved to 11am. Fine. Whatever. As long as it’s tomorrow I don’t give a fuck.

As I was wheeled to surgery prep, the usual jitters are back. Surgery #7. Same stuff. Told the nurse to get me versed after everything is signed, and all the consults are done.

Aggie made it time to see Dr Lupo. It was such a relief to see her. Yet again I gave her the biggest hug as the Versed went in. But Jesus. The anesthesiologist gave me a double dose. It’s all I remember after that point

I woke up around 4pm. Familiar feelings. Instant pain but fuck was this different. Fentanyl every 15 minutes. It was getting worse. After 2 hours in recovery, I was taken back to my room.

The hospitalist was right there and I told him how I was feeling and what we needed to do. He ordered a PCA pump, which is where you push a button and you get pain meds immediately. But this took forever to get. The nurses tried to stay on top of pain management, but by noon the next day it was through the roof. We couldn’t get ahead of it.

As the hospitalist was in the room, the anesthesiologist came in and started to overhear how bad this really was. He caught the “just put me in a coma until tomorrow” line. And he immediately perked up. He pulled the hospitalist out of the room and talked with him outside the door. I couldn’t hear shit, but the only thing I heard was “I’ll be right back”

The hospitalist came back in with another mega dose of fentanyl and said that he’s going to administer ketamine. I was like fucking seriously?! And just like that, the anesthesiologist came back. And I went on a fucking ride

But it worked. I was pain free. Weird way going about it. But it allowed me to ween off of the fentanyl and back to dilaudid. They agreed to give it to me daily till I left

Since then, I’ve been working with Hepworth and surgery #2. This would entail debriedement of my face, neck, inside my mouth and jaw. He would most likely need to work with an oral surgeon to accomplish this. Hopefully we don’t have to remove a portion of my jaw. But who knows how this will go. This is all brand new territory for me

Today I got off of the phone for Ketamine treatment. I would potentially be able to start within 4 weeks. So here’s hoping something opens up sooner.