This post will focus on the disappointing experiences I’ve gone through to get to having a proper diagnosis. In order for you to get the help you need, don’t put 100% faith in the American medical system. Most of what I’ve learned over the past 2 years, most doctors these days are checked out, and are not looking out for your best interests. Some of this is a rehash and repeat of previous posts, but I feel that it’s good to relive this experience again.
My first experience was the dentist in IL. Even though it is unrelated to my CVID, it’s still applicable. My teeth issues have always plagued me. Growing up. Another cavity. Then in 2006, that’s when things sort of took a turn for the worst. That dentist wound up retreating 3 previously root canaled teeth he had previously done. I made it a joke at the time, thinking that he was looking out for my best interests, and taking care of me the best way possible. Fast forward to 2018, a Cone Beam CT scan proved otherwise. Of the 13 teeth he root canaled, he royally screwed up 11 of them. I’m pretty sure that tooth #18 was contributing to most of the recurring infections I was getting in my mouth. This was the tooth that was retreated several times, but this time, the root canal went too deep. The root canal was actually 2mm too deep into my bone.
My second experience was Swedish Medical Center in 2018. Getting hospitalized for cellulitis & sepsis in March 2018. Thinking that I was finally hospitalized, that I would get some answers to the problems and symptoms I was experiencing. They literally just pushed antibiotics through me for 2 days, and let me out. Mind you the physician that was the one who discharged me (who I told the staff I wanted a new doctor) wasn’t listening to my concerns. To which I later learned he was a temporary staff member. I don’t think a temporary staff member should be making calls on when a patient should be discharged. After being released, I didn’t feel any better. I was also given Bactrim as an antibiotic to go home to, shortly after taking my first dose, I started to have severe skin peeling issues. Found out the hard way I am allergic to Sulfa medications.
The following Monday, tooth #18 was extracted. 3 days later, back septic again at Swedish (this took 3 separate ER visits, and help from my GP at the time to get me re-admitted). I started to advocate for myself at this point. I vented my frustrations and disgust as to why I was discharged so soon. I met with some nurse who recorded our conversation, and I literally told him that they need to focus on finding the root cause of my infection, and that I am not leaving until it’s gone. 4 days later of Vancomycin, discharged. I did feel better this time. It seemed that the infection was gone. I felt somewhat satisfied
After being discharged from Swedish, from the findings of the previous CBCT scan I had done, I started to readdress those issues with my Endodontist. She retreated several teeth. As I said previously, every time she retreated a tooth, I felt worse. Rashes got worse. Overall I just felt miserable. Thats when the ER visits started up again, however, I decided that since my experience at Swedish wasn’t very good, I thought changing hospital systems would be a better idea. How wrong I was. I had a few ER visits where the rash was literally covering me from head to toe. It burned, it itched, my throat burned. Just felt like an allergic reaction. But to what? I went on prednisone basically an and off for a solid 2 months. Prednisone seemed to keep the rash away. The minute I would taper off of the prednisone, the rash and throat issues returned. My older ENT I was seeing for possible GERD issues believed it was just inflammation. But no root cause as to WHAT was causing it. Just a bandaid at this point.
In July I decided to find a dermatologist that could address the overly abundant amount of cysts I had growing in my face. From what I learned from being hospitalized the first time at Swedish, was to not pick at my cysts. Last time I did that, I wound up in the hospital. So I turned to a dermatologist that specialized in laser removal. I met with one of their PA’s. She seemed nice, listened to my history. Had the medical assistant dig out a few of the smaller acne pits I had. It felt like I was maybe going to find an answer to the acne at this place. Nope. August comes, we discuss removing the cystic acne. Seemed like the right thing to do. We discussed removing them with the assistance of a laser, as well as saving a few of them to have special labs performed on the contents and the makeup of what exactly is on my face. Of course, they didn’t get that right. Nor use the laser we discussed. As the medical assistant numbed up my face, the PA came into the room with a “student” to observe the procedure (I didn’t mind). The PA starts to markup my face as my face gets numb. But that’s when I noticed the PA didn’t clean the incision sites before making the cuts. At the same time, she wore some bracelet with charms that kept touching my face. Touching the sites which had cysts removed from. I was annoyed. But I had to sit there to wait for her to finish digging them out. Of the 14 cysts I had, we managed to remove 9 of them. I got my goodie bag of hibaclens and gauze and I was on my way. None of the sites where the cysts were removed were cauterized, or closed with stitches, they were all left open. My previous dermatologist at least closed the sites, and actually cleaned the surgery sites prior to starting to cut into me.
The next 2 days I started to decline. I did my best to keep my face clean. I would clean the sites every 2 hours with hibaclens, and use antibiotic ointment as instructed. My face was on fire. Fucking hurt. So I contacted the on-call doctor, whom instructed me to come into the office the next day. He comes in, yuck yuck, I look fine. The typical “I don’t want to help you” answers. My face was red. Starting to swell. Streaks were starting to form from the cyst removal sites. But again, the Dr says “You look fine, there’s nothing wrong”. I left the office severely disappointed, and still in pain. I returned home disgusted. I started to feel worse. On top of my face burning, now I have a fever, and my ears are rudolph the red nosed reindeer red at this point. Thats when I looked at the wife and said, we need to go to the ER. I wasn’t feeling good. The “septic” feelings were coming back. At this point I moved my care going forward to Porter Adventist. They were the ones handling my “allergic” reactions. So it just made sense to go there. The ER doctor really didn’t do anything. We sat there for at least 3 hours. He comes into the room, says that it just looks like I need different antibiotics and he sends us home. Keflex. Big whoop. That’s not gonna do shit for me, but I guess I’ll give it a try. Next day I was declining further. Blood pressure, heart rate, and just the overall feeling of I feel sick was getting worse. I texted the wife, and called my friend on the way back to Porter ER. Once I arrived at Porter, I started telling the doctors what tests to start running on me. Lactic Acid, CBC with auto diff, C Reactive Protein. The doctor looks at me funny, but I told him that I have previously been septic, and that’s how I feel. 15 minutes later, a different doctor comes in. Looks at my past previous ER visits. Between that and the bloodwork coming back showing I am septic again, on top of the cellulitis that returned. He put be back on Vancomycin. And 30 minutes after, they pull bloodwork again, my results are even worse.
Getting admitted at Porter Adventist was not an easy task. It took 2 ER visits to get them to do something, but only after I advocated and told them what we needed to do. In hindsight, why the fuck should I be telling them what to run. You would think they would know what to do just based off of listening to a patients issues / previous issues. 2 hours later, I am moved from the ER up to my room. Frustrated and scared, I broke down. Hospitalized again. I can’t win. I get put on my loading dose of Vancomycin, as well as fluids round the clock. I was marred to “Wilson”, my IV stand. The admitting physician seemed to be on the ball, I felt like I was in good hands. Next day comes, that’s when things get weird. Infectious disease comes in. First time I have had a consult with infectious disease. I talked about the cysts removed, my previous issues with cellulitis. I started to brainstorm with him, but he wouldn’t take any input from me. Vancomycin has always been the drug that’s worked in the past for me. However, he wants to put me on something else. I get switched to Ampicillin & Sulbactim. I guess. He’s the Dr. He should know what he is doing. The next day, he comes back. My bloodwork hasn’t changed. My white blood count is still high, as well as my CRP. My body is still fighting something, and the antibiotics aren’t working. So he decides to switch me to Linezolid. Next day bloodwork is starting to show some improvement. At this point I’ve been in a CT machine several times, however, I am now starting to have an allergic reaction to the contrast. Now I’m getting hives. So now I get to go back on prednisone, again. The hospitalist that was charged with taking care of me was cocky, and checked out. He cared more about my Nintendo Switch than getting to the bottom of why I keep going septic, as well as the cellulitis that keeps coming back.
After spending 4 days in the hospital, they switch me to oral Linezolid. After tolerating it ok for a day, my bloodwork starting to look better, they decided whatever I was fighting was gone. Discharged. They put me on 14 days of Linezolid, which by the way is almost $400 a pill without insurance. We stopped at CVS on the way home, we don’t even carry this. Walgreens had it, however, Cigna rejected covering it. It was funny, the pharmacist says “Just get some Clindamycin”. I just laughed. I called the hospital back that I wasn’t able to get my Linezolid filled. Sitting at Walgreens just waiting, something wasn’t right. The septic feeling was coming back. I told my wife, “I don’t feel good”. This progressed pretty quickly into I feel sick to my stomach. I called the hospital back, they said to report back to the ER. 15 minutes later, I am back in the ER. The doctor was a complete idiot. I kept telling them that I was just discharged for cellulitis and sepsis, he didn’t believe me. He came back into the room, and I told him that if I am not put back on my fluids, and antibiotics, that the sepsis will get worse. He pulls bloodwork, low and behold, WBC’s and my lactic acid are back up abnormally high. Readmitted. It only took 3 hours between getting discharged, and readmitted. What the fuck actual is going on? That kept repeating in my head.
Upon readmission back to Porter (even got put back into the same room), a new internal medicine doctor walks in whom changed my life forever. He says “Did you know you are immunocompromised?” I was like uhh AIDS/HIV compromised? To which his reply was “No.” A wave of relief went over me, but at the same time a deep concern began. Basically he explained to me that my body is not producing enough antibodies to fight infection. Which is why I am continually going septic, and fighting infection. The cellulitis came back, the fevers came back. Here we go again. Dr puts me back on Linezolid, but now adds Metronidazole. They started another IV, one in each arm. “Yay”. The Metronidazole starts first, Linezolid second. About 5 minutes after the start of the Linezolid, red streaks started to form on my left arm. It was the Linezolid. Maybe a bad vein? Who knows. I pushed the button. Nobody came. So I took the Linezolid off myself and waited for the staff to show up. After about 10 minutes, they came in. Told them what happened. They left the IV in, but switched me back to oral Linezolid. Pain was starting to become a problem, they put me on Dilaudid. Finally some relief. The fevers started to return. Getting higher. I called the nurse in, I was getting concerned. Asked her to get the doctors. Something wasn’t right. Anxiety. That’s what they said. Anxiety. Fine. Whatever. You guys are the doctors. That did nothing for the fevers, or the ongoing infection. But I guess I need sleep. I’ll take it.
As the days passed my labs slowly started looking better. At this point the Dr. who ran the immune tests on me came in to talk. Goddamn he was a great doctor out of this entire shit experience at Porter. He ran the tests again, on me. Things are going lower. He mentioned that Porter doesn’t have immunology specialists. At the time, I was already seeing an immunologist for the rashes, and the anaphylactic episodes. They started to talk. More tests were ran. By about the 5th day, my labs started to look better, however, they wanted to move me to oral antibiotics, which at this point, I’ve had what, 6-7 different antibiotics through me within the past month? I refused. I said, no more oral medications. It’s going to mess up my stomach. Advocating for myself the best I could was met with, “You are going on oral medications and probably being discharged tomorrow”. Wow. What a professional response from this dick hospitalist (the same idiot who was in love with my Nintendo Switch).
Now I am on oral Linezolid, and oral Metronidazole. That night, my stomach started to hurt. My abdomen started to ache. #2 became more frequent and less solid. I called the nurse in “You’re fine”. The next day the pain worsened, the nurse walks in with my discharge, and I advocated for myself saying “My pain and abdomen are starting to hurt, I need to be put back on IV antibotics”. To which she replied, “You’re getting discharged today, that’s not going to happen. Whether you like it or not.” Which that shitty attitude I said fine print everything out so I can just go to a different hospital to get proper treatment. Fuck I was pissed. Discharged again. At least my labs were looking better. It was at this point I contacted Mayo admissions in Minnesota.
The next day… all I can say is wow. It didn’t take long. Woke up with a 104F degree fever, chills, extreme pain. I was sweating so badly and it literally felt like an alien was coming out of my body. I rolled around on the floor in the bathroom. Stripped down to just my underwear to try to cool off. Wife joked at first, but soon realized that this wasn’t normal. At this point, I was starting to shit blood. This isn’t good. It was 7:30am, rush hour everywhere. The closest hospital unfortunately is Porter. I wanted to go to UC Health so badly as thats where my old immunologist was telling me to go to. 30 minutes later, back at Porter. I was met with “You again?” I wasn’t laughing. The sheer amount of pain I was in, as well as the literal WAR going on down below, I told the nurse what was happening, and told her to get the Dr immediately. I had to go again, they weren’t believing me about the bloody stools so I said “Give me a collection hat so I can show you”. Sure enough, it was half blood, half chocolate milk (sorry for the visual). I handed it back to the nurse who met me with the snide remarks in the beginning and I told her that “Here’s your proof, now go get me some fucking morphine”. Doctor came in about 5 minutes after that. CT was ordered, as well as me telling the Dr. “I want patient advocate services in my room when I get out of CT. I do not want to be hospitalized in this godforsaken place”. 15 minutes later, morphine. FUUUUUUUCKING SO MUCH BETTER. I at least couldn’t feel much.
I was carted off to CT. Jesus, this has got to be what, the 19th CT of me at this point? “The Donut of Truth”. The technician chuckled. After I return back from CT, I was met by patient advocate services. I fucking exploded at them. I told them about yesterday. About how I kept telling their staff that something wasn’t right, however, my advocation fell on deaf ears. I let them have it for probably a solid 10 minutes. I was fucking angry, and I had every right to be. CT results come back, bloodwork comes back. CT showed 2/3rds of my colon are inflamed and infected. My WBC was 30!!! Thats the highest I had ever seen my WBC ever. Along with that, you guessed it, lactic acid was at 4.7, sepsis again. This all could have been avoided had the staff just fucking listened. But they didn’t. The Dr came in and said we need to admit you. With the patient advocate staff standing there I said “The fuck you aren’t, you are going to pay for an ambulance ride to UC Health, where I will be treated better, and you won’t be able to harm me anymore.” The Dr. and advocate services staff left my room shortly after that. 10 minutes later the Dr. comes back into the room. “UC Health doesn’t have any beds available for inpatient, and I think the best course of action is to keep you here”. At this point I had no choice, get admitted once again at one of the worst hospitals in this entire experience. I told the doctor that I want a completely different staff, that I don’t want that asshat doctor who discharged me previously ANYWHERE NEAR me. Just like that, admitted. But now that I complained to patient advocate services, this “nurse” kept coming in every hour to talk about whats going on. I wanted to fucking punch her in her teeth. I won’t go into detail about the garbage coming out of her mouth was, but it was just stupidity at this point. Trying to cover up their fuckup.
At this point, I am NPO. No food/water. Nothing. I was placed on constant fluids, and morphine every 2 hours for pain. At least I couldn’t feel anything anymore. I was then met by a new set of doctors, which, just like last time, didn’t give a fuck about what I had to say. They started taking stool samples from me, bloodwork, and urine. Of course the first thing they test me for is drug abuse… WHAT THE FUCK. Tests that were ran:
CT Scan: Findings consistent with transmural colitis of the ascending and transverse colon. No free air or abcess formation was identified
Drug screen: NEGATIVE (DUH)
Urinalysis Auto w/scope: Nothing of interest
Venous Lactate: High (2.5mmol/L), after starting back up on fluids & antibiotics (2.0mmol/L)
Shiga Toxin 1 or 2: Negative
Culture Stool Yersinia Vibrio Areomonas Plesiomonas: Negative
Clostridium Difficile (C-Diff): Negative for both A and B
Procalcitonin: Normal
CBC w/ Auto Diff: WBC still extremely high
Norovirus 1 & 2: Negative
Giardia and Cryptosporidium: Negative
They started treating me with oral Vancomycin thinking that I had C-Diff. They also started me up again on Metronidazole. The next day, I was just wiped. Hungry. But out of pain due to all the morphine I was getting around the clock. They decided to consult in Gastroenterology. Ordered up a colonoscopy to take a look at the damage / ongoing issues below. I was still feverish. Getting the chills. Seemed like you couldn’t give me enough blankets to warm me up. I was just cold.
Colonoscopy Findings: Scattered mild inflammation. Biopsies were taken from several of the inflamed locations.
Final Diagnosis: Small intestinal mucosa with associated lymphoids. All colon biopsies revealed focal intraepithelial neutrophils.
Resolving acute colitis was ultimately the diagnosis. I felt miserable. I was allowed to start on a liquid diet. It was nice to finally drink something again. Broth, was amazing. I haven’t eaten in 3 days. Later that night, I started to get a sore throat, which started to look like strep. They cultured my throat, which ended up being negative, but it felt like something was choking me. They started me on oral amoxicillin, which was later changed to Ceftriaxone. The next day, they moved me to a different room, where I was met with a new doctor. He seemed pleasant, but really had no idea what he was faced with. I had him contact my immunologist to start working up my immune system issues. At this point my IgG/IgM declined even further. Again, Porter didn’t have an immunology department capable of continuing my care. So it was decided to transfer me to UC Health. I thought finally, getting me away from Porter was the best thing that could have possibly been done.
After a short ambulance ride, I was admitted at UC Health. The attending physicians were nice. They started me up on fluids, Vancomycin, Metronidazole, Ceftriaxone, and morphine. The next day, I met a new doctor who ordered a consult with Immunology. After meeting 2 individuals from immunology, they believed that it was warranted that my immune system be looked at. After the consult, I had an appointment with them roughly 4 weeks out. That’s when the Dr. decided to make the call to pull me off all antibiotics, my labs were looking better. Then sent in a therapist to talk to me. Of course I emotionally broke down. I have literally been through hell at this point. They wanted to make this look like this was all in my head, however, you really can’t “make up” the labs that they were pulling from me. Whatever. Discharged.
Fuck it felt to be great to be home. Between August 22nd, and Sept. 6th, 2 weeks hospitalized. It was nice to be walking around outside of a hospital. Or not having to hear beeps, or getting constantly poked. The wife picked me up, and took me home. It was nice. Mayo contacted me back accepting me as a patient. My first appointment with Mayo was well out into the end of October, it’s fine, I can wait. I wanted to have them start taking a look at what the hell was going on, and get a better set of eyes on my situation. Colorado healthcare didn’t seem to even know what was going on. I told myself, hopefully we got whatever the hell was in my body out.
Roughly 1 week after being discharged, the unwell feelings returned. The “septic” feelings came back. By now I was well versed in determining when to go. Back to the ER we go. But this time, my lactic acid was fine, WBC’s were fine. I just felt really shitty. Discharged.
The morning of the 10th comes. That’s when I woke up really not feeling well. Dizzy. Confused. Slow. My heart rate is just through the roof. Constantly in the 130’s, my blood pressure was between 135/90 and 150/110. I knew something was wrong, but just tried to stay on the couch for the whole day thinking its just maybe this is actually “all in my head”, but what my watch and BP cuff were telling me, it wasn’t. I tried to remain as calm as possible all day long. Around 6pm, wife is off from work. The sepsis started to hit me hard. I started dry heaving. Shaking. My head wasn’t right. She raced to UC Health. 120MPH and taking the shoulder to avoid traffic. As we were getting closer to UC Health, the shakes and dry heaving got worse. We pulled up to the door, and I told my wife to grab a wheelchair or tell the staff we need assistance getting me from the car. Shortly after a staff member arrived and barely made it into the wheelchair. That’s when I sat in admissions dry heaving, shaking. There was a guy ahead of me who was clearly a drug-seeking patient just repeating “I want morphine”, all the while I am literally starting to die. They push me forward, I sign the consent, they start taking my vitals. My BP was 200/150, and a HR of 177. I was also burning up with a fever of 102F, that’s when I remember hearing the sepsis alarm and them getting me back to room #1. As they pushed me back through the double doors, they started putting defib stickers on me. I was met by 7-8 people in the room (this is where my memory goes to shit).
After arriving to the room, they asked me to get onto the gurney. And that was it. That’s all I remember. I kept coming in and out of it. The dry heaving continuing, the shakes. The staff started putting IV’s in me. Pulling blood cultures, venous lactate, lipase, etc.
ECG 12 Lead: Sinus tachycardia, ST Abnormality. Ventricular and Atrial rates 154BPM.
Hepatic Function Panel: Normal
Troponin I: Negative
Lipase: Extremely High (426U/L)
Venous Lactate: Extremely High (6.4mmol/L) (Highest its ever been)
CBC w/ Auto Diff: WBC’s slightly elevated (11.2)
Urine Culture: Negative
Going in and out of it, I remember small fragments. They immediately put me on fluids, and gave me Zofran for the dry heaving. My wife was in command, yelling at the doctors frantically telling them what has been going on with me. Shortly afterwards, they put me back on Metronidazole, and continued fluids. This time, they gave me Fentanyl for pain. I drifted off. My body was done. I was done. I woke up 2 hours later to what I think was an ultrasound being performed. My BP and HR was coming down, as well as my venous lactate (4.1mmol/L). My admitting physician met us, she was somewhat rude, but whatever. I started to advocate more vocally at this point. I told her that “I am to be admitted and kept until whatever has been causing these septic episodes is found”. She nodded, disappeared for about an hour, then came back. Admitted once again. Fucking survived the last septic episode to date. But I will tell you this, I don’t think if it was for the fast reacting ER staff that day, I wouldn’t have made it. I’m still here I said as I was moved up to a semi-private room. They ordered more bloodwork and a loading dose of Vancomycin, and pain management. I asked for my Valium which I was getting for the muscle spasms, but they were reluctant to give it to me.
I didn’t sleep well that night. The overall experience that just happened rocked my world. I was exhausted. The guy I shared the room with left his TV on with the volume up, so there was that too. The next day I started to advocate even more for myself. I wrote on my board of what my expectations where, and what needed to happen. My jaw was pulsing. My neck hurt. I wanted an Oral Surgeon to start pulling teeth. At that point my concern was osteomyelitis, and/or an infection in my mouth. I was certain of it. I could feel it. Finally my “team” made rounds, met me. And all I did was pointed to the board and said, this is what we need to do. I had explained to them that this was my 6th septic episode, and that I have an infection in my mouth. To which they didn’t even care. They discontinued my Vancomycin and ordered a CT of my neck (for the 10th time), and I kept telling them that the cellulitis isn’t there, and to stop CT’ing me. That’s when I really clashed with one of the hospitalists who said “Well I am your doctor, and this is what I think we need to do”, I said thats fine, I’ll just call patient advocate services and get you removed from my care team. I tried exactly that, only to be met with more resistance from the patient advocation team. Aren’t they supposed to help the patient?
The CT just showed enlarged cervical lymph nodes. My labs started to look better. Lactate was back to normal, and my WBC’s were normal. The next set of labs, my WBC’s shot back up to 17.2, which meant that my body is still fighting something. Trying to talk my hospitalist into doing anything for me at this point was a waste of time. I was getting desperate. My face started to swell up on the left side of my face. I kept telling them to get infectious disease and OMFS involved to help find the infection that I clearly have in my jaw. That fell on deaf ears. They discontinued my Vancomycin even though my WBC’s were still extremely high, they are taking me off everything. Even IV fluids. Thats when I contacted Mayo again to see if we could get me moved over to them ASAP. Colorado wasn’t cutting it anymore. That night the pain really started to hit hard, the burning left side of my face, and the swelling started to become more prominent. I hit the button and asked that the on-call hospitalist please take a look and to reconsider putting me back on antibiotics/fluids/pain meds. Everything started to hurt. The hospitalist came in the room (Wife was there as well), looked me over, felt my face, drew labs, and said that he didn’t see anything wrong with me and that my specialists were coming in tomorrow. Which to me meant what I had asked for previously.
I have never been more wrong in my life. The next morning I am greeted by my shitty hospitalist that didn’t care at all what I had to say. Then shortly after, I was met by 3 Psych people. 1 being the head of Psychology, and 2 students. That’s when the preverbal shit hit the fan for me. I stopped them pretty quickly and dismissed both of the students out of my room. I was hoping to have a heart to heart conversation with a Dr. that maybe cared about what I had to say. The entire time my neck has been spasming, and I have continually asked for my Valium to which I was denied repeatedly for. She agreed to get me Valium. And that was it. I let her know that I had an infection that is being overlooked in my mouth, but she wasn’t interested in that. After she left, I knew that the discharge was coming and there was no way for me to stop it. As expected, the next day, the discharge came. Again, I got on the phone with Mayo, and had firm dates. At the same time, I contacted my Oral Surgeon that I was unable to get to every time we had extractions set, hospitalizations got in the way. The best part of my discharge and diagnosis from UC Health was SIRS w/ Anxiety. LOL. NO SHIT I HAVE ANXIETY, NOBODY IS LISTENING TO ME. I contacted the short term disability company at this point through work because I knew this wasn’t over for me. I needed to get to Mayo ASAP.
Immediately after my release, I scheduled emergency extractions of teeth 21, 20, and 19. We also removed mucoceles that were forming in the bottom of my left lip as well. Guess what, the septic episodes stopped. Kudos to my Oral Surgeon for being a great doctor, I cannot say enough good things about him.
2 weeks later I met with the immunology team at UC Health. As I posted earlier about this. Tests were ran, diagnosis was CVID. This was about the beginning of October. They knew that I was going to Mayo. The immune challenge was done with both the Pneumavax 23 and TDap immunizations (sore shoulders galore for days).
My uncle called me, offered to bring me to MN. Since I am now officially immunocompromised, flying was not an option. That was basically asking for it. 14 hours later, we get to Minnesota. I slept most of the way there. I just had no energy. I am grateful for an amazing, and supportive family during this time. When I moved from Minnesota, things just went dark. But we picked up where we left off. We laughed the whole drive to MN. It felt good to be around family again. Since mom died, like I said, I became a recluse.
Going to Mayo was the best idea, and thing I did. It solidified what I was doing with UC Health’s immunology department was the right thing. But again, thats when UC Health started working against me, and not for me. I was waiting for the results of the Pneumavax 23 & TDap pre-immunization. I contacted UC Health several times that Mayo needed the results of the tests to conclude their testing and recommendations for my treatment going forward. The nurse asked “Well, who is going to be treating you for your problem, Mayo, or UC Health?” Drawn back somewhat I silently asked myself “WHAT THE FUCK”, and replied to her, “well UC Health will be continuing my treatment once I have a proper diagnosis done at Mayo”. The test results were vapor. Mayo concluded their opinions, I met with the Dr I met initially at Mayo, and flew the wife up to drive me home from Minnesota. It was great to see her again. I missed my best friend. She is my everything and I wouldn’t change a single thing about her.
We drove home to Colorado. As we were passing through Nebraska, “New Test Result Available” finally popped up on my phone via the UC Health App. There were the pre-results from both immunizations. It was very clear that within the 4-6 week window of which you are supposed to be rechecked, that my immune system really didn’t do much with either of the immunizations. I sent the comparison results to my immunologist, along with Mayo’s recommendations for IVIg, and I got a positive response back saying that we will get the IVIg started.
Into November/December. I was hoping that UC Health would get me on IVIg soon. Again, the Dr. decides to go against Mayo’s direction of IVIg, and to just monitor and wait. I spoke with the immunologist at UC Health over the phone, and I guess it made sense. They re-pulled the antibodies from the immunizations, and to my surprise, the protections were there, and my IgG started to go up. Maybe this was my teeth the whole time. Maybe my immune system is just slow, or recovering from what was clearly a problem up until they were removed, my teeth.
March of 2019. Turning everything around, Immunoe was the BEST place I could have gone to. Recommended by my Oral Surgeon to dig deeper into my mouth issues, funny enough, Immunoe also had an immunologist. I thought to myself “Hmm”. I had my final meeting with my immunologist at UC Health. I asked to have the IgG subclasses pulled, as well as my IgM, and IgA. At the same time, I asked him to redo the antibody tests for both the Pneumavax 23 and TDap immunizations, as people with CVID lose those antibodies quickly. The immunologist didn’t care. He was more focused on retiring in June, than helping me get to the bottom of my malfunctioning immune system, or helping me get treatment for what I clearly have. All he did was IgG. He said “You have been trending up, there shouldn’t be a reason for this”. Results come back later in the afternoon, I slid backwards considerably. This was after I had teeth 12-14 extracted. His responses that I put in other parts of my blog were disheartening.
However, my ENT’s NP… love her. She got me over to the immunology side of things. At the same time, I reached back out to Mayo in desperation hoping that I could get on IVIg. It was so damn clear that my immune system was in trouble, and that without it, I would not get back to a “normal” life (which I’ve yet to experience). I was finally able to get the proper diagnosis for CVID, which I have been advocating for almost 7 months now for, as well as find other problems that I have been experiencing.
I learned a valuable lesson throughout the past 2 years of trying to get an answer for what has been plaguing me for basically a lifetime. Advocating for yourself is the only thing you can do. Nobody else will do it for you (minus an amazing wife). The sad part of the medical field is that most doctors are just jaded, checked out, or quite frankly don’t care. I am so happy that I am now surrounded by a team of doctors, family, and my wife that fully support me and whats to come. I couldn’t ask anything more from anyone.
Now with this post, I will now only look to the future. But at the same time, I wanted to leave behind what really happened to me. Maybe this post will help some random stranger out there that’s experiencing the same thing I am. Or needing some sort of inspiration to just keep pushing. Again, all I can say from all of this is don’t give up. Use your voice. You know your body better than anyone else. Sometimes it takes 4-5 doctors to get it right, but in the end. You get the help you need.
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