Growing up with a hidden disorder wasn’t easy. As I’ve said in previous blog posts, my life has been a rollercoaster. Being sick all my life has taught me to roll with the punches, and accept the fact that I just get sick a lot. Again, in my youth, it showed itself as recurring strep throat. After removing my tonsils, the infections evolved into recurring bronchitis, severe seasonal allergies, ear infections, upper respiratory infections, colds, flu, and pneumonia. As I hit my mid 20’s, cystic acne was added to the ever growing list of shit I’ve had to deal with.
“Hindsight is always 20/20” mom used to say.
As I look back constantly and reflect on the past 2 years, I can honestly admit that I’ve been struggling day to day for a very long time. 2016 was fine until the blackout episodes. 2017 brought about several cyst removals that probably caused more harm than good. Up until 2018, I think my mind and body was perpetually trapped in fight or flight. I was just always on high alert. When 2018 hit, I knew something was seriously wrong after coming home from MN. I think that’s when the real fight started. 100% total disclosure, sepsis is not something to be taken lightly. It is a definite danger signal that most people ignore. I will admit that the first 2 episodes really didn’t make any sense, and that after the first two hospitalizations, I thought it was over. I picked up some weird bug from MN.
Since getting away from UC Healths’ demeanor of completely disregarding a patients rights, this gave me the strength to start becoming more vocal, and being able to talk to doctors directly. That experience truly taught me that most doctors out there, do not care about you. It’s the American medical system, where logic, common sense, and compassion has gone out the window. Since probably my return from Mayo in 2018, my mind and body have just been on survival mode. Autopilot. Just getting to tomorrow.
Since the complete 180 degree shift of February 2019, narrowing down the problem has been my absolute focus the past 4 months. Having a supportive team of doctors willing to listen, investigate, and provide real solutions was the key factor here. Again, I don’t think I would be here writing this today if it wasn’t for my Oral Surgeon, my ENT team, or my new immunologist, they have been a breath of fresh air, and has given me the strength to get back up on my own two feet. The real shift began with my Oral Surgeon. I was hoping that the oral issues would have ceased. It was a necessary evil. I’m just glad that with the help of my Oral Surgeon, we were able to stop the main source of infection in my body, I would have to say that that was 60 degrees of positive change towards my overall health.
As I sit here, the moment of my ENT’s NP replays in my head over and over. Without her compassion, ability to listen, and actually being a great human being, I don’t think I would have been able to nail down the other 120 degrees. I remember the appointment like it was yesterday. I nervously sat in the waiting area of IMMUNOe. Of course my thoughts were racing at this point. Playing the “what if” game. I had too many unanswered questions, I actually went prepared with a list of “up to this point”. As I sat there, I started to write down more on the cue cards I am constantly writing on. “John?” It was time. After a 20 minute conversation with the MA (Medical Assistant), a distraction occurred. Her computer died. To her disbelief, she was extremely apologetic. I didn’t mind. She then disappeared through the door. Leaving me back to my thoughts. I continued to write more stuff down on the cue cards amidst the absolute silence in the room, sans ticking of probably the loudest clock I’ve ever heard. Tick. Tick. Tick. Tick.
After 30 minutes past, I finished writing the “summary of my nightmare”. No more than I finished writing on both front & back of the cue cards, that’s when the person who influenced mostly everything walked through the door. She was very confident. She shook my hand, and dragged one of the chairs about 2 feet from me and said “Sorry about the computers”. At this time, a knock on the door happened, and 2 more MA’s came in along with another NP. Nervously I sat there trying to collect my thoughts. I’ve always been good at reading people. Body language. Demeanor. Etc. The NP then introduced me to everyone in the room, and I just let go. I literally became a bubbling pile of goo. Emotionally, and physically spent, my hands were shaking as I explained and read off from the cue cards. I cried periodically throughout the entire appointment as I was reliving/rehashing what got me in her chair in the first place. That’s when she politely asked me to just hand her the cards. She started to read through the beginning of 2018. “Interesting”. “Hmmmmm”. “Something ain’t right”.
I looked up at the clock, and I had already burned through an hour. As the MA typed/dictated our conversation, things started to make sense. At this point my head just hurt. Everything hurt. That’s when the NP revealed why she was delayed. She started looking at both my CT/MRI scans from Swedish back in early 2018, and started to compare the same scans done at Medical Center of Aurora. “You have a tumor in your head, it’s known as an osteoma. It’s been there for probably a long time. I don’t like it due to the fact that it has exponentially grown in a very short period of time.” she stated. That’s when shit started to hit the fan for me. I broke down again. She started to explain where it is, and what it’s causing. It lined up with everything I was experiencing. Headaches. Head going to explode. Severe fatigue. As she listed them out, I felt like I was playing repeater. Yep. Yep. Yep. Yep. It was at this time I started to realize that we might be onto something. After our discussion, the not so fun part of the visit happened. She took a look at my ears first, clearly saw the other side of the wall, then moved onto my mouth, and nose. She then started to rattle off several things to the MA. Things I’ve never heard of before, however, I was more focused on breathing through my mouth. That scope went up my nose pretty far. She then ordered both a CT scan and an MRI to really look at the osteoma and it’s impact.
After her evaluation, I brought up my immune system issues to her. I started to explain to her that Mayo recommended that I most likely have CVID, and that I would probably have to go on IVIg. She knew exactly what I was talking about. I was floored. I told her about my experience at UC Health, and the fact that they were refusing to run more tests. I brought up the fact that they didn’t want to look at anything further. As I was sitting there, I showed her my IgG/IgM history from UC Health. She then ordered a BATTERY of tests (almost $3,000 worth). She is a godsend at this point. She was doing everything I asked. She listened. At this point we were 2 hours into my appointment. I couldn’t believe she spent that much time with me. I don’t think I’ve ever had a doctor (minus Mayo) spend more than 15 minutes total with me at any given point in my life.
I then went downstairs to the lab and had so many vials of blood taken from me. But again, I’m used to being poked at this point. I didn’t mind. For the next week, I sat watching Labcorps. Eagerly awaiting the results of my immune system testing. That’s all I cared about to be honest. 3/16 comes, and the results are in:
- IgG overall low
- IgG Subclass 1, 3, & 4 deficiencies
- IgA Subclass 2 deficiency
- IgM overall low
At the time I didn’t care however, these results should have been more concerning to me:
- C-reactive protein EXTREMELY HIGH
- WBC was elevated
Once I saw the results I had a feeling what was next. My follow-up appointment was the next day. My ENT’s NP walked through the door in a great mood. She again pulled the chair up next to me with about 10 pages worth of documentation. I again emotionally broke down thanking her for everything. It took me about 10 minutes to compose myself, but I think this is all apart of the process. She started to explain my CT/MRI results first as that was the first thing I wanted to discuss. She sat and explained each finding in detail with the scans. The osteoma was big. Really big. The main concerns was it pushing into my left eye, and my left frontal lobe of my brain. I was destined for surgery. “Fred” I said. She laughed, to which she replied “Fuck Fred.” After explaining everything, and the surgical procedures, we then moved onto labs. She said that my immune system is definitely malfunctioning, but wants the immunology side of the practice to take a deeper look into me. To my surprise, I got an appointment within 2 days. I thought it would be another month.
Sitting down with my immunologist was so hard. Again, being emotionally and physically gone, I lost it again. I went over all my labs, and work ups that I’ve had done over the past 2 years between Mayo and UC Health. Again this memory echo’s in my head, and I’ll never forget it. “Just looking at your work ups, medical history, and the ENT’s findings, You need IVIg like its 10 years ago yesterday.” my immunologist said. Again, I lost it. Finally I thought to myself “I’m going to make it.” He then gave me all the literature for IVIg, and took the wife and I on a tour. It was surreal. I couldn’t believe the amount of effort I honestly didn’t have to spend explaining myself to IMMUNOe. I cannot thank them enough nor express my gratitude towards the entire staff of IMMUNOe. They are the ones whom saved my life. They stopped the downward death spiral I have been perpetually trapped in for the past 2 years. I can honestly say that between both the sinus surgery, and the IVIg therapy, I am finally starting to recover, and feel more like myself.
Yesterday was a good/bad for-telling of the future, and how things are going to be. Leaving the house is not an easy task for me lately. For almost 2 months now, I have been home bound. Back to my reclusive behavior. In the past 2 years, going out and just enjoying life has been a challenge, and not an easy one at that. Whether I am feeling like crap, or a fun time in the ER, experiencing life lately has been severely limited to the 4 walls, and shitty upstairs neighbors of the place I call home. To be honest, I haven’t left the house outside of doctor visits. I haven’t been feeling the greatest up until the surgery. Leaving the house for surgery was a mental challenge for me. I was going to the one place you really don’t want to go to. Anxiety leading up to the surgery was almost overwhelming, but I just stayed positive. After the surgery, when the wife & I went to target, the social awkwardness of my CVID is starting to be noticed. Wearing my mask protects me. I am not sick.
Walking through the aisles was extremely difficult for several reasons, for one, I was really drugged up from the hospital for starters, but secondly, the people shopping made it quite apparent that I am different. I’m not. I am the same person that I always have been. Approachable. Funny. I can tell from when people stare at me when I am out in public, that they really don’t understand. As I was walking by people, they noticed. They made it quite obvious to “avoid” me. Wearing the mask in public has really been beneficial to me, as again, it protects me. However from a social viewpoint, I’m looked upon as something else. As my friend and I were walking into the theatre yesterday, he forgot his wallet in the car. As I was standing out in front of the theatre, people were passing by, staring straight at me. I was looking down at my phone to try to distract myself from me being a “public nuisance”, however, I could see everyone’s reaction to me standing there. As we walked in, more and more people were staring, kids that passed by asked their parents “Is he sick?”. In my head I answered “no”, but I could tell that people were definitely noticing the mask. As Endgame concluded yesterday, the 3 hour butt burner required a “pit stop” before we headed home. Standing in the men’s room, everyone avoided me. As I was there doing my business, there was another urinal open next to me. Some random guy comes walking in, stands up next to me, then slowly backs away, and walked away standing as far away as he could. I could feel him staring at me. Awkward.
I hope that the social acceptance of me wearing the mask out in public happens soon, or becomes less noticeable. I will most likely be continuing to wear the mask, as again, it keeps me safe. I want to be outdoors again. Not trapped indoors again. The reclusive feeling of being in the apartment in my “jail” has really made me want to get outside. Having the IVIg therapy will be instrumental to my recovery, and prevention of recurring infections going forward. Once my trough levels for IgG have reached the 1000-1100 range, I will keep the mask on me in the event that there are sick people around, however, maybe I will be free from the social awkwardness that CVID has burdened me with. At the same time, stare at me all you want. Form your own uneducated opinions and judgements of me by just looking at me.
Never read a book by its cover. I am a pretty good read.
Discover more from A Journey of “Do No Harm”
Subscribe to get the latest posts sent to your email.