This morning was pretty rough getting out of bed. 6am came quick. The sleeplessness has started to creep back. I woke up a few times. Yes. The pain is starting to come back. I can feel the swelling in my face near my jaw start to flare. At 3am, I got up to take my night dose of Dilaudid. It’s the same pain I’ve felt for the past 2 years.
I am often reminded every hour how much it hurts. If you are just reading the blog for the first time, I’ll catch you up.
In 2018, I was diagnosed with Common Variable Immundeficiency Disorder. This came after 8 hospitalizations where I was declared septic with no source of infection. Sepsis is a serious immune reaction which causes life threatening responses from the human body. Lactic acid, which normally happens when working out builds in your body. However for me, I wasn’t working out. My immune system was on complete high alert.
Every hospitalization, every episode required IV antibiotics to help “bring me back” from where I was going. My blood work looked seriously bad. Everything from lactate, to kidneys, to liver function, as well as my white blood cell (WBC) and neutrophils. Highest WBC that was recorded was 38.5. Lactate hit almost 12. Fever was somewhat high.
The common theme here, is that my body is obviously fighting an invisible force. Doctors scrambling. Coming up with no answers. My ER visits became almost weekly. Panic began to set in. Fear of the unknown.
After surviving sepsis for the 3rd time, you tend to latch onto the warning signs of an episode coming. Extreme fatigue, fever, chills, sweats, muscle spasms. Just a feeling of extreme overall illness. Blood pressure going through the roof. Heart rate > 150. Your body starts to signal you more and more that something is catastrophically wrong.
By the 5th septic episode, and hospitalization, I turned to a different hospital. Swedish Medical Center wasn’t getting to the bottom of the issues. So I turned to Porter Adventist.
The memory of Dr. Kraus was burned into my head to this very day. I was admitted previously at Porter for Septic episode #4. Not more than 8 hours before I was discharged I was back again. Dr. Kraus was ordering labs like crazy while I was being stabilized in the ER, and they were making a room for me upstairs available. My mind was racing as I was pushed up into the elevator to my room.
No more than I made it to my room I was met by Dr. Kraus, who was my hospitalist/internal medicine doctor. With my wife at my side, the shock of my life was about to happen.
As he began to introduce himself, he immediately cut to the chase “How long have you known you have no immune system?’.
My heart immediately sank. I knew that what he was talking about didn’t sound good. I had no idea this was even a thing. He then began to reassure me it wasn’t HIV/AIDS. He then began to explain CVID in detail. About how is where your immune system doesn’t generate antibodies, or B cells. He then precluded to say that he’s doing everything he can, but he needs immunology to help, but there’s 1 problem, Porter doesn’t have an immunology department. At the time I was working with an allergist, so I contacted her, she recommended I move to UC Health. I agreed to that, but at the same time, I contacted Mayo Clinic. I had a feeling this will probably require their expertise. I received an appointment, but I won’t be able to get in until late October. So I was transferred to UC Health.
When I got to UC Health, what little did I know, and what was going to ultimately push me to septic episodes 7-9. Pushed my body closer to shutdown that I’ve ever known. Immunology did their workup. Confirmed that my IGG was extremely low, as well as my IGM. As I finished my hospitalization, immunology ordered a ton of tests. They probably pulled 25 vials of blood from me that day. Handed me a business card, and said to contact their office the next day to get an appointment setup to do further investigation.
I got into UC Health immunology within a week. But that’s when the terror began. The blood work came back pointing towards CVID, but in order to be officially diagnosed, I have to do a vaccine challenge.
This is where they give you TDaP, PNX23, and another polysaccharide-based vaccine. They take titres prior, and test 4 weeks after. After getting the preliminary stuff done, and the vaccines were administered, it’s October, time to head to Mayo in MN. 2 days before I left for Mayo, UC Health pulled my post-vaccine titres. But results were non-existent.
Right before I left, I had an oral surgeon remove all my teeth on the lower left hand side of my face since that’s where most of the issues were coming from. I thought that if I just pull them, maybe I’ll eliminate the infection hiding in them, and underneath. In them you say? Every tooth in my jaw was root canaled except for 2.
After the traumatic experience of having them removed, along with a mucocele, I left for Mayo.
Mayo went ok. The immunology consult was the most important one. The minute Dr. Divekar walked through the door, he said that I have classic CVID. All my childhood illnesses, young adult, the teeth issues, the recurring sepsis episodes. Everything points to CVID, and that I would need immunoglobulin replacement therapy. He then asked about my vaccine challenge results. I could only give him the pre-titres, UC Health at this point, was extremely upset I left for Mayo. They wouldn’t post the post-titre results to my portal. So I just asked Dr Divekar to re-pull the labs since UC Health isn’t helping.
As I returned back to Colorado, UC Health finally posted the results of the testing, and my body didn’t learn much. I learned maybe 30% of all the vaccines, and really didn’t have a substantial increase. But their reaponse was that I didn’t have CVID, and that I was dehydrated.
DEHYDRATED
I’ll let that sink in for a few. As we almost pulled into home, the results from Mayo came in, and that my titres fell backward to pre-vaccine levels. Yeah, the post test was 10 weeks after vaccination, but showed that my immune system was broke. And that I really did have CVID. So Dr. Divekar wrote a letter, recommendations, and requirements for what I needed. I turned around to UC Health, and they said they wouldn’t be able to get insurance to approve. Because they weren’t taking in what Mayo did. They were going off of the lazy opinion of the head of immunology.
With that, my attempt to get treatment for a clear diagnosis would have to continue elsewhere.
Early 2019, I finally followed up with an ENT I was referred to back in 2018. The wait to get into his office takes an extremely long time. But it was well worth its weight in gold at the end. I
I met his Nurse Practitioner (NP) to review the scans taken during my first round of septic episodes. First thing she said when she walked through the door was “You have one of the largest tumors in your frontal sinus that I have ever seen”. I know she was saying it in kind, and trying to break the news to me softly. About midway through the appointment, I brought up the immune problems, and if they knew/worked with any immunologist in the area. “We got one downstairs, do you want to talk to him?”.
I was overcome with excitement. Maybe. Just maybe I’ll find someone who can help me with the immunoglobulin.
But back to the appointment, we finished up with and endoscopy of my sinuses, a CT/MRI of my head. And she set me to follow up and see Dr. Hepworth in 2 weeks. As I went downstairs, she gave me the referral to see immunology, I got an appointment a week out, and left feeling that maybe I’ll get this all fixed.
Probably one of the longest weeks of my life happened. I put together all the lab work, history, the letter from Mayo, and headed to see Dr. Sarid. As I sat and waited, my wife was there too. She’s been so supportive through this whole ordeal. As Dr Sarid came in and introduced himself, and what he can do potentially, I opened with the letter of recommendation from Mayo. I thought it would be a good opening card to play first.
He looked the letter over and said, take me through your past. I said before I do that, I handed him the supporting lab work that I had done. I went through my childhood, and didn’t even make it to the young adult part.
“I’ve heard enough” he said.
The first thought that ran through my head was great, not going to get anywhere with this.
That’s when he followed up with “I am sorry that doctors for years ignored all the signs that you have an immunodeficiency, and that it looks like you were severely undertreated until today”. Pure shock hit me.
I broke down in his office. Finally. Someone smart listened.
He started to go into what IVIG is and when I will start. Was this really so hard? I couldn’t believe it.
I started IVIG therapy the next week.
During my infusion, the results from the CT/MRI were ready to be discussed. I told the NP from the ENT’s office that I was already there in the infusion center, she said “oh, I’ll be right there”.
She came in calm and collected as my body was not understanding what was going on. She explained that the large tumor is an osteoma. Which is also pushing into your skull and left eye socket. It’s also closed off all the exit pathways in your sinuses so that nothing can empty. This would require surgery pretty quickly to resolve.
Well that answers why it feels like someone is jackhammering my head 24/7.
I met with Hepworth the following week, and when he came in and introductions were out of the way he asked “What are you doing Saturday?”. Odd question, I guess having surgery? He laughed, but then explained everything that needed to be done. Surgery should only take 2ish hours.
Saturday came, and the all the anxiety too. I slept like complete shit. Maybe got 2 hours. I was extremely nervous. Last time I had surgery was when I was 12 when they removed my tonsils and adnoids.
We got to Presbyterian St. Luke’s for surgery, but I was checked in via the child side of the hospital. Surgery was happening on the children side, not the adult. I found out after the fact that it was because of my CVID and they were taking every precaution. As I hugged my wife and a friend left, I was wheeled back to the OR. And that was it.
Almost 7 hours later
I woke up in agony. What the fuck just happened. Nurses periodically came in, and gave pain meds. The recovery took awhile. My whole head hurts in a different way now.
It took me a few weeks to bounce back from the surgery, IVIG continued to help.
By October 2019, my symptoms were pretty much gone. Maybe it’s time to put the teeth back in my mouth via dental implants. But Jesus I had no idea what was about to come down my way. Again
Alan Pomeranz (notice I’m not calling I’m a doctor) placed 5 implants in what’s called an “On all 4” procedure where a denture is secured via the implants.
Just like that, I got my teeth back. But soon after, the next nightmare began. One of the implants didn’t feel right. It hurt when I ate, but I just chalked it off to “new implants”. But my body was telling me something different.
I started to get a lot of swelling along my jawline. I could feel my heartbeat in my jaw. Not even 1 months later, implant #21 failed. The day before Thanksgiving. He seemed quite panicked when he was removing the implant. Kept saying that the procedure went ok, and that these things happen. It’s the one time I should’ve went with my gut.
The Uber ride home was hell. I was in a ton of pain. But something familiar came back. The septic feelings. Something was wrong. I started gagging. I got home and things just progressively got worse.
When Anies got home, I called the on-call for Dr. Sarid. Told him what’s going on, and where I’m going. We talked in the car on the way to Sky Ridge. As we pulled in, he was already calling the hospital. Good thing we went, my blood work looked really bad. So I was admitted. My face and next ballooned up pretty good.
Everything hurt. But as usual, they gave me a few days of antibiotics and kicked me out. I still didn’t feel good.
When I got home, things weren’t right. I started to feel worse. So then we continued to go to the ER for almost the entire week. Finally I got an ER doctor to refer me to infectious disease. He was basically giving me daily antibiotics anyway, so he’d rather have this followed by them.
I’ll just be brutally honest with this. Dr. Alyseen was a complete asshole. He didn’t even want to get to the bottom of the infection. He just ran 6 weeks of Ertapenem/Pipercillin and threw his hands up and yanked out my PICC line. He said that there is no active infection, and dismissed me.
2020
The pain continued to worsen. I couldn’t control my pain anymore. So I turned to pain management for help. I was put on morphine to help with the pain. It worked for awhile, but as the year went by, it started to fizzle out. We had to adjust my dose a few times to get ahead of it.
But it wasn’t pain, it was infection causing it. I went to get a second opinion from another infectious disease group, to which they placed another PICC line, and did ceftriaxone for 6 weeks. She referred me to a different oral surgeon, which yielded nothing. But her hot take on my issues that it was my implants. Something’s wrong. At the same time I was getting these crazy rashes. Sores. You name it. It was almost like an allergic reaction.
So I went back to Dr Sarid and told him what was going on. He ordered an allergy test, but before I had it applied, I brought extra stuff to test. A titanium implant, and the tooth material used in the denture. I wanted to make sure we were looking at everything. The test yielded a positive result for gold and cobalt. Well that explains the rash around my finger, maybe this rash is related to my implants. The PICC line was removed after I finished the course of antibiotics. But this would set something in motion I would have never expected. I’ll talk about this further down. Due to the allergy results, Dr Sarid put me on Xolair. Which is for severe allergies / hives.
I returned to Alan Pomeranz (not a doctor), and told him the findings. He came right out and said none of those materials are used, but Jesus this lazy fuck was wrong. I pulled up the MSDS data sheets for the material used in the implants, the abutments that attach the teeth to the implants are cobalts. So I had this idiot take out everything except the implants. Most of the pain sort of calmed down, but it soon returned.
I then began to call him out. Told him something happened during the procedure, and that I feel that the implants are causing all my problems and that they need to be removed. Of course he replied like a pouted child. But in the end when I used the words “life threatening symptoms” he agreed to remove the implants.
During this whole time since the PICC was removed I was exhausted all the time. Felt like I was not getting enough air. 3 weeks prior to the implant removal, I was teaching class at work when I started to see stars, I couldn’t catch my breath. I felt like was suffocating. I completed the class, and immediately headed to the ER at Swedish as it was the closest hospital. But at this point, my right arm was hot to the touch and swollen. It didn’t feel the greatest either.
After telling the Dr, she ordered a sonogram of my arm. The sonographers face told me what was going on. It was another clot. I got a clot before, so I know what they felt like. And sure enough. It was bad. Every vein in my right arm except for one was clogged all the way from my elbow to my heart. Probably another week and I would have died had I not come in.
I was rushed into interventional radiology and was going in for an emergency surgery.
I spent the next 4 days in the ICU. They managed to remove and dissolve the clot.
2 weeks later, the implants were pulled out. And I was “escorted” out of Pomeranz’s office.
The next 2 weeks was filled with ER visits and antibiotics. Yup. Just as expected. I called Mayo. Again.
2021
Mayo found a 5mm drill bit lodged into my jaw. It was from when the implants were placed. Found that when they put me through an MRI. An X-ray confirmed it. However, Mayo wouldn’t remove it. I frustration, I left.
I called Anies on the way home and told her what we found. I scrambled calling more oral surgeons to have it removed. Thankfully I found someone that could remove it in 2 days.
Maybe this was the end? Nope.
The infection continued. The swelling in my jaw continued. Constant kidney stones. It was like what could go wrong, did go wrong. Doctors wouldn’t help me in Colorado anymore. I was labeled a drug seeker.
The swelling under my tongue, jaw, neck, and cheeks worsened. The pain worsened. I turned back to pain management to have my meds changed to dilaudid. I needed something that can get me through. I tried going to different ENT’s. But I couldn’t get anyone to help at this point.
The dilaudid helped. I was able to do stuff at work. I could get out and do social functions. But the jaw pain wouldn’t go away. So I turned back to an oral surgeon to shape down my jawbone. It’s called an alveolarplasty. It seemed to help, but the swelling and pain came back.
By 2022, my head has just started to hurt. My left ear was constantly emptying this gunk. Pus has been coming out of my earlobe constantly. I decided to find a new GP. I’ve had enough of this.
The new GP ordered an MRI of my head, and this defect, that I’ve seen in my imaging has gotten bigger. Theres an infection in my mastoid. Thankfully I had a follow-up with Hepworth in 2 weeks. And that’s when things started to take a turn for the worst. I felt sick again. Septic. Lethargic. I started to have issues with balance, and the headches that was getting was unreal.
I met with Hepworth. At this point pus is coming out from everywhere. I was expecting to get dismissed. That there’s nothing wrong. I’m crazy.
I’m not.
Hepworth began with the MRI. He pointed out several things that the radiologist always misses. Firstly the pus under my tongue, he was able to push stuff out from there. It was the most disgusting thing that I’ve ever tasted. He then turned his attention back to the MRI, explained that there is a subcutaneous infection in my face. He could feel it as he palpated my skin. He mentioned that this could be actinomycosis. Once of the infections I was pushing all the infectious disease doctors that that’s what we suspect this is. Finally. Validation I am not crazy. Then lastly he pointed to the thing I’ve been seeing in the MRI’s. Mastoiditis. That I have infected fluid in my mastoid, and that he would need to do a joint surgery with another ENT to address the issues.
He sent the other ENT a text telling him about my ear. I felt like I was finally getting listened to again. The one thing I changed however, was having Anies come to every doctor appointment. She sees me go through this day in, day out.
Dr hepworth said to just be ready for surgery soon. So I said ok. Let’s do it. I left that appointment with hope. Hope that maybe I could get rid of all this. But that hope was crushed 24 hours later.
Another kidney stone hit me like a brick wall. It was the worst I’ve ever felt. The pain is literally everywhere. It hit me on the way to work, I knew exactly what it was. I got to work early, but was doing “the dance”. My boss came in and I told him what’s going on. His peer Nate helped me get home, no way could I fucking drive at this point. I called my best friends wife April and asked her to take me to the Urologist. As she came to pick me up, the second wave of pain hit me as I was walking down the stairs from the apartment. What is normally a 15 second walk, became a 30 minute ordeal to get to the car.
I felt every bump, turn, cough. I was hanging on for dear life with this one. As April pulled up, I thanked her as the pain sort of passed and I moved as fast as I could to the X-ray department at the urologist. I couldn’t sit, I continually did the dance. The pain was becoming 10/10. Nothing worked. As I checked in for my appointment, I walked away and she said you can sit in the waiting room to the right. I told her that I’m going to do this instead, I literally laid down on the floor. The pain won. I couldn’t move. Paralyzed. The nurse came out and helped me get up. And showed me to an exam room.
The doctor came in and I immediately begged him for surgery. The X-ray did show that there was a 7mm stone in my right side and that it was stuck. He said that I wouldn’t be able to do surgery today because of the anesthesia, but he would get me in ASAP the next day. Even though that was a relief to hear, the pain dropped me in the hallway where I couldn’t move. They called down to the surgery center to get torodol to help with the pain, thankfully it worked in 10 minutes, I composed myself and left to go home.
The stone was removed successfully the next day via lithotripsy.
The next week after I met with Dr. Lupo. He’s the surgeon that will address the mastoid. I had a hearing test, which I failed horribly at. Then met with him in the exam room. He reviewed the MRI, and said that I need surgery, a Mastoidectomy. He then said he would contact Hepworth to coordinate surgery.
I had to wait 2 months for surgery. It felt like an eternity. But the shit hit the fan a week before surgery, Hepworth backed out because the scheduler was incapable of doing her job. I let her have it because she scheduled a procedure at Swedish who doesn’t have the instrument to do the procedure. She wasn’t happy about it, but I could give 0 fucks at this point. I spent the entire month prior coordinating disability I’m not going to wait.
The mastoidecomy happened anyways. Took 3 hours but it was done.
The recovery wasn’t easy. It took 3 hours to move from the recovery room to home. My head really hurt, I was nauseated like crazy. It felt like a barometer was installed in my head. I felt every thunderstorm for 2 months. But realistically I was counting down the days until the second surgery. It’s just too bad it didn’t happen when it was supposed to.
The sialendoscopy was done mid August. It helped, but confirmed actinomycosis. Hepworth put a PICC line in and started IV antibiotics. In the beginning they seemed to help some, but then they sort of stalled. As time went on through the end of 2022, Hepworth suggested I see a doctor that specializes in chronic co-infections.
As 2023 came, things weren’t any better. My ear was constantly hurting. The pain in my face, neck and jaw was worsening. The swelling in my mouth was getting worse. So I met with Dr Naylor, who is an osteopath. They are doctors that are trained in Western medicine, but also has eastern medicine training as well. From my first appointment, he suspected that I have Lyme disease, so he ordered a different test. Not the ones that other doctors have ran before (I suspected it). The test came back positive. He changed up my antibiotics, and added herbal supplements to help. It did make my ear feel better, I was sort of hoping for a 2 birds one stone type of deal.
I was on all sorts of stuff for at least 6 months. It seemed to help, but then the left ear pain started to tell me that I needed to go back to Lupo. He ordered an MRI, and it showed more fluid in my left ear, again. What was supposed to be a Pre-Surgical consult at the end of May, turned into me being admitted to Swedish for antibiotics, pain management, and surgery. This time, we will have to completely take out my left mastoid.
I waited 2 hours outside of swedish until Dr Lupo’s office called that I have everything to be admitted. It was an eternity of waiting, but finally I got up to my room. The minute I was admitted, I contacted our disability company and filed a claim. I wasn’t going to mess around this time.
The surgery went ok, he was able to remove the entire Mastoid as planned, but I wasn’t prepared for the rollercoaster of pain. The fentanyl wasn’t working anymore. Pain was spiraling out of control, that’s when the hospitalist talked to the anesthesia guy and he brought in Ketamine.
After they pushed 30mg of ketamine, I went completely pain free after the “journey” they sent me on. I didn’t use the fentanyl as much as I was. It was a big relief. So they decided to give me ketamine and Dilaudid for pain control. It worked. I also had a consult with infectious disease, and they finally acknowledged that there is an infection and that they would manage my IV antibiotics for the next 6 weeks.
The recovery from the surgery was not easy at all. Followups were done, tons of doctor visits, had to get my PICC line replaced. Just felt like a job. I was averaging 5 doctor visits a day for the first part. It was exhausting.
Apart of that, I decided to transition back to IVIG. When COVID hit in 2020, I changed to subcutaneous immunoglobulin. I had a port placed, and did 2 infusions of IVIG. But instead, I opted to have a portocath placed so they I don’t need a PICC line anymore.
The pain has never calmed down, so I turned to Klarisana, who specializes in Ketamine therapy. Since it worked in the hospital, maybe it will help me get to October 25th, which is when I have a second revision surgery with Hepworth to address all the remaining items. It’s $2,300, and insurance doesn’t cover the treatment, but I’m at that point of whatever it takes to get relief.
So far the Ketamine is working, and I. Getting a few days of pain free bliss. So I’ll continue doing this so I can get back to work, do some things, then head back out on disability for the second surgery. Hopefully the recovery from that is quic
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