Health is nothing to be taken for granted

Well,

Where do I begin?  From the beginning I guess?

Being a kid growing up I was always sick.  Strep throat 8-10 times a year.  Constantly.  Mom always thought it was because I wasn’t wearing warm enough clothing, etc etc.  In 1991, my Tonsils & Adenoids were removed and it seemed that the “problem” went away.

It just masked itself into other illnesses.  Ear infections, sinus infections, bronchitis, upper respiratory infections, etc.  Throughout my late teens to mid 30’s, always sick.  Always on antibiotics 6-8 times a year.  Mostly I just wrote it off as being a smoker, and this is because of it.  When I moved to Chicago in 2004, the illnesses got more frequent.  But again, being young and stupid, it was just go get a Z-Pack, and get back at it.

In 2005-2006, cystic acne started to happen.  Out nowhere, couldn’t figure out the cause, but again, that was a stressful time for me.  My ex wife attempting to kill herself several times, and having to be responsible for 2 kids was a daunting task.  I broke off in 2006 from my ex wife just because I couldn’t take the stress any longer, and it was the right thing to do.  However, the strange illnesses continued.  First root canal happened.  No idea why / how, but maybe it was just stress from the divorce.

In 2007, I started working a 2nd job to help pay the bills @ a nightclub in Chicago.  Vision Nightclub.  The memories of that place will forever be cemented in my head.  However, the illnesses continued, again, I contributed them to me working too much, smoking cigarettes, bad lifestyle.  But like clockwork, still getting sick 6-8 times a year, same illnesses that I’ve always had.

In 2008,  The illnesses became more frequent.  Constantly getting bronchitis, pneumonia, upper respiratory infections, pink eye.  You name it, I had it.  Endlessly on antibiotics.  Again, wrote it off as stress from the divorce.  It was hard getting my two children ripped away from me by the state of IL.

In 2009, the cystic acne continued to worsen. I had 3 cysts removed from my face, however, they came back months after.  Second root canal happens.  Which by the way, any tooth work in the lower front is the worst.  Getting numb is the worst.

In 2010, I got “the phone call that changed my life forever”.  Mom had cancer.  Lung.  It was the hardest thing to hear.  It utterly destroyed me.  The added stress of work, mom, made the illnesses worse.  The cycle become more frequent, starts off as a cold, respiratory infection, bronchitis, then pneumonia within 2 weeks.  I couldn’t go more than a month without being sick, or fighting off some weird bug.  Work started to look down on this.  Whatever.  It’s just stress, temporary, I’ll get over it.  I’m young.

In 2011, after a routine dental checkup, we ended up having to re-do the root canal from 2009.  For whatever reason, the infection came back.  Dentist said that it happens.  Oh well.  The random illnesses continued to become more and more frequent.  Between going to random convenient cares, and clinics.  Felt like I couldn’t catch a break.  Again, wrote it off to smoking cigarettes, and the nightlife scene.  As well as having mom’s cancer to worry about.  I was constantly going back & forth to Minnesota to take mom between chemo visits, and radiation.  Balancing that, work, and being sick constantly was taking its toll on me.

Feb 2012, emotionally drained, physically wiped out, and mentally exhausted.  Mom’s cancer won.  The night before she died, I needed to get away to a friends house.  Where I ended up going out into his basement to smoke a cigarette, and no more than I knew, he’s hovering over me asking me if I am ok.  I blacked out.  My head hurt.  I hit my left side of my head going down on something.  But that’s when the teeth became another additional cause to my health issues.  I ended up going home 3 days after mom’s funeral in agony.  My mouth fucking hurt.  We ended up root canaling more teeth

2013, the root canals continued.  The illnesses still occurring.  Turned to a dermatologist for help. Got put on accutane for 8 months for the cystic acne, it did nothing.  All it really did was dry me out.  It made some of the acne go away, however, the cysts continued.  I continued to have them surgically removed.  But it seemed like every time I would remove them, they would just come back.

2014-2015, even more root canals continued, had to have yet another one retreated, however during one of the procedures, the infection came out and deteriorated my gum.  I was headed for emergency periodontal surgery to use skin from the roof of my mouth to repair the damage done from the infection, wound up going on short term disability for 8 weeks to recover.  I will say this, worst pain of my life.  After this, it seemed the cystic acne started to go out of control.  I started to just take them out myself.  I was sick of it to be quite honest.

2016 brought a new opportunity for me to get away, and try something new, in a new state.  Colorado.  Moving to Colorado was beneficial in many ways.  And strangely enough, the infections stopped.  But that soon changed. I started having swallowing issues.  My cystic acne was getting worse.  I had 4 cysts removed, all which yielded nothing.  Gagging on simplest of things.  Then the infections started back up again.  Christmas day 2016, I blacked out and popped out my ribs in my back, which took my chiropractor MONTHS to get them to stay in.  I probably saw him at least 30 times. 

2017 I started to complain to my dentist about pain in my bottom jaw.  Where the old surgery was done.  X-rays were done, no evidence of an abscess or anything.  I complained throughout the year, to only be answered with “I am grinding my teeth”.  The pain continued, as well as sinus infections and the usual started to come back.  More towards the end of November 2017, I started to feel worn out and run down.  Just didn’t feel like I was firing on all 8 cylinders anymore.  I just started to sleep more.  Work was becoming more stressful, I was smoking more, meh.  It’s just life right?  The cystic acne continued, got 5 more cysts removed.  Again, no pathology.

2018.  The most fucked up year of my life.  In January, I finally convinced my dentist that the pain in my lower jaw was not going away, to which I was referred back to have them endodontically retreated.  The pain subsided.  Rashes.  Jesus.  I started getting rashes all over my body.  It didn’t matter, legs, back, arms, stomach.  It was almost like shingles.  But the rashes would come and go.  So I decided at this point to cut out gluten, thinking that I am having an allergic reaction to it.  It seemed to help lessen them, however, they would continue to come and go.  Similar to the rashes that I was getting in 2015, but much much more prominent.

February, pus started to come out from the left side of my mouth, and thats when the illnesses started going into overdrive.  Sweating constantly, constantly having brain fog, and just generally not feeling well.  I get a text from my sister, “Dad’s in the hospital”.  At this time she’s going through her second round of breast cancer, I am the only one who can go.  In my haste of getting my shit together, I managed to break my little toe on the right foot.  I drove to MN worried about dad.  They put him into an induced coma, Staph infection was what he was fighting.

Got to MN in about 12 hours, but between CO and MN, I was bored, so i started to pick at the cystic acne that has been plaguing me for years.  I managed to get some out!  I was like AWESOME.  A few minues later, the sour/bitter taste hit my mouth.  I did get a lot out, but some went inside, where its not supposed to go.  I stayed in MN for about 2 weeks until dad came out of his coma, and I headed back.

Around March 15th, I started to not feel well.  The fog got worse, the overall “I feel sick” feelings got worse.  I woke up the next morning not knowing my name, or where I was.  I was in trouble.  3 ER visits to Swedish medical center later.  Septic.  Vancomycin for 2 days.  I was discharged. The following Monday my dentist arranged to have a Cone Beam CT scan of my mouth at the Fauchard center, as the pains were getting worse. 

The findings:

• Nasal Septum Deviation with bone spur and nasal passage constriction on the right
• Endodontic Underfill
• Teeth #2 (Palatal Root), #12 (Palatal Root), #14 (Palatal Root), #20, and #29
• Defective restoration
• Teeth #13, and #18
• Apically widened periodontal ligamant space tooth #14 (Palatal Root)
• Endodontic Overfill tooth #18 (Distal Root)
• Persistent/resolving periapical inflammation and lesion tooth #18
• Probable biological width inpingment of teeth #18, and #31
• Furcal alveolar bone loss
• Teeth #18, 19, 30, and 31
• Probable recurring dental caries in tooth #21
• Crestal alveolar bone loss, facial, tooth #21
• Bifurcated dental root, tooth #28

Tooth #18 gets extracted, I didn’t feel any better.  The head pains, the cellulitis had returned.  3 more ER visits, I went back to my doctor and begged him to hospitalize me.  At this point, my heart rate and blood pressure was through the roof.  I was readmitted back to Swedish again for Sepsis & cellulitis.  4 days more of Vancomycin.  I complained to the hospital officially that I was released previously too soon.  At this point, the cysts started to form on the inside lower left of my lip.  Known as mucoceles.  I met with my oral surgeon to get them removed.  But could never get to him due to the constant issues, and re-hospitalizations.  I finally quit smoking.  I decided it was best for my health going forward.  Officially quit April 1st.  Between nicotine gum, and switching to vaping, this allowed me to stop something I should have never started doing in the first place.

Between April and July, I spent $4000 redoing all of the bad root canals found by the CBCT.  But I didn’t feel any better.  It almost seemed every re-treatment, I felt more and more worse.  Sick.  Ill.

August.  I decided that “the infection” in my mouth was gone, now let’s start to address my cystic acne. At this point, I counted over 14 cysts.  To which I went to a dermatologist who I thought was going to remove them via laser, instead, they got cut out.  Open wounds, no stitches.  I requested that special lab work be performed on the samples taken out (to which they failed to order properly).  My suspicion was that the infection was a certain type of bacteria known as cutebacterium.  Which take years to manifest/grow.  I did my best to keep the excision sites clean, however, the cellulitis returned yet again.   Fevers, chills, gagging, high blood pressure, I decided to switch hospitals.  Porter.  Worst fucking hospital ever.  I was hospitalized yet again for Cellulitis and Sepsis.  I was there for a few days, and met with infectious disease whom didn’t really care about my input on what this could potentially be.  They changed me to 3 different antibiotics within 2 days.  Day 3, discharged.  Less than 3 hours later, re-admitted back for Cellulitis and Sepsis again.  However, this time, one of the Dr’s asked “Did you know you are immunocompromised?”  I was like uhh AIDS/HIV compromised?  No, its called CVID. New antibiotic.  4 days pass, they switch me to oral antibiotics, which this was when the bottom part of me went “fuck you”.  I started to get painful cramps.  Felt like an alien was going to come out of me.  Yet, they didn’t care too much about that, so they discharged me.

Got home, woke up the next morning with 104 degree fever and the worst abdominal pain I’ve ever experienced.  Except now I am shitting blood.  Awesome.  Back to Porter we go.  CT showed 2/3rds of my colon was inflamed.  Then they blasted me with basically everything under the sun.  Ended up getting at colonoscopy which just showed inflammation, and resolving colitis.

I begged my immunologist at the time to move me to UC Health as Porter was basically clueless.  No more I get to UC Health.  Discharged.  Colitis / Cellulitis / Sepsis.  I continued to feel like garbage.  Just didn’t feel good.

About 2 weeks after, the feelings of sepsis came back, but worse.  My friend Ruben was visiting at the time.  My ears were burning.  On fire.  I told him “I’m probably gonna go septic soon, I just have to wait to get bad enough”.  6pm rolls around, wife frantically driving me to the ER at UC Health as I am dry heaving, shaking uncontrollably, basically dying.  BP was 200/146, HR of 177.  UC Health calls the Sepsis alarm.  I’m wheeled back to the ER pronto.  I get to room #1 (the room you go to die in) where I am met by 10 staff members.  “Can you get into the gurnee” they asked, I tried, but blacked out.  I woke up 2 hours later to getting an ultrasound and my wife going ballistic with the doctors.

I made it, survived sepsis again.  I thought that was it.  Once again I was admitted to UC Health.  Unknown infection.  I kept telling them that there was an infection in my jaw, and that I have CVID (Common Variable Immunodeficiency Disorder).  The doctors looked at me like I was crazy, and did exactly that.  Sent me 3 therapists to talk.  Discarding the fact that my jaw was swelled up.  Discharged again.  At this point, I went on short term disability.  I couldn’t balance work and my health any longer. 

I finally made positive contact with my Oral Surgeon, and we started removing teeth as I had nowhere else to turn.  Within a 3 week span, I had the entire lower left of my mouth removed, as well as the mucoceles that have been growing in the lower left of my lip.  I have no bottom left teeth at this point. 22 was still hurting, it was sensitive to tapping, I could move it.  But again, my dentist told me to wait.  My oral surgeon continued to give me vicodin to just get through the pain, as bone spurs started to come through my jaw, which is typical.

2 weeks later, I get a full immunological workup done by UC Health.  Confirmed.  I have CVID.  But at this point, I had reached out to Mayo clinic for help.  As the health system in Colorado is absolutely fucked.  And I mean FUCKED.  They immunize me for Tdap (Tetanus/Diptheria) and the Pneumavax23.  They pulled my pre levels prior to immunization.  This is them “testing” my immune system.  Throughout this entire time my IgG has never gone above 500.

October.  Mayo.  I went through a full re-evalutation at the Rochester campus in Minnesota.  I saw a variety of doctors.  Internal Medicine, Immunology, Oral Maxiofacial, infectious disease, and dermatology.  From the dermatology portion, the biopsied 2 of the rash spots, which returned back as folliculitits.  Immunology, they confirmed already what I’ve been doing in Colorado.  CVID.  Only treatment path is IVIg replacement therapy (IRT).  Every 3 weeks, for the rest of my life.  OMFS, took a panorama x-ray as I was concerned of a much deeper infection in my jaw known as osteomyelitis.  I was still in a lot of pain in the lower left of my jaw.  Tooth #22 still hurting. 

There is a Dr there, to which I won’t mention names in my blog.  She is the most amazing Dr I have ever met in my life.  She helped re-arrange all my appointments to a single marathon day, instead of appointments spread out over 2 weeks.  And she continues to help me to this day.  She is one person I cannot thank enough.  Hopefully one day, we will have that coffee that I definitely owe her. 

I returned to Colorado expecting UC Health to start working on getting my IVIg therapy ordered and set so I can start to recover.  NOPE.  The immunologist feels that I don’t need it based on the fact that my immune system reacted well to the Pneumavax23 shot, (Diptheria didn’t even register).  However, my IgG was still < 500uL, as well as my IgM was <25. Im borderline REQUIRING it from a lab perspective, but from a clinical perspective, I need it.  What did my immunologist do?  He ordered it.  He ordered the IVIg as if I was getting a kidney replacement.  To which Cigna immediately denied.  And that’s where that ended, but I didn’t find out about how he ordered it into 2019.  I returned to work late November.  Felt good to be back.  I felt better, but something still wasn’t right.  I was still worn down.  I would sleep, but when I would wake up, it felt like I got 1 hour.  Sinus infections continued.  More antibiotics.  Fatigued to hell, I just pushed through it.

2019.  I’m supposed to be feeling better by now right?  Nope.  The teeth issues continue.  Sinus infections continue.  I’m still miserable.  But now the rashes start coming out of nowhere.  I cut out gluten a long time ago, perhaps maybe its the vaporizer?  Stopped vaping, rashes continue.  So the jury is still out on that. 

Fast forward to February, I get 5 more teeth pulled.  I sat down with my oral surgeon, and basically told him that I wanted all the root canaled teeth pulled.  Since last year, pulling root canaled teeth on the bottom seemed to have stopped the septic episodes.  I go to my Endodontist who retreated the root canals, perform another CBCT, and the radiologist finds more problems with both #22, and #24.  I returned back to my oral surgeon where 22 was finally pulled, (was infected), as well as tooth 24.   A few weeks later teeth 12-14 were pulled as the pain started to hurt more and more there.  Again, each tooth infected due to improper closure of root canals.  They were harboring bacteria.  Then, I come down with a mild form of mastoiditis.  The back of my head was hurting.  My neck hurt.  I’m starting to just fall apart at this point.  From both a physical, and emotional perspective, I felt broken, and just not knowing what to do.

Frustrated, I asked my Oral Surgeon if we could dig deeper, and he referred me out to a new ENT (Ear Nose Throat) doctor.  To which my surprise, has turned my world right back upside where it should be.  After giving them a “brief” history of my health, they ordered an MRI & CT of my head, and a deep dive of my immune system. And wouldn’t you know:

I have a tumor in my head called an Osteoma.  Typically they are a benign bone growth, but it’s the size of a golf ball.  The ENT even saw it on CT’s done back in 2018, and noticed that it was increasing in size.  The results of the CT and MRI are still out, haven’t gotten the results back, so we will see.  I am waiting for my ENT to read the results, which we already know will require surgery to remove.  This tumor is pushing into my brain as well as my left eye, and is causing the weirdest of headaches and pain.  So potentially by mid May, Fred will be gone.  Below is a slice of the CT done where the tumor is at its largest, however, the tumor starts at the base of my nose, and goes all the way up halfway up my forehead/skull.

Secondly they referred me to a new Immunologist.  And jesus christ, finally.  They recognized immediately that I require IVIg replacement therapy.  So with a few medical release forms, my entire immunological workup, a letter of recommendation from Mayo and a complete emotional breakdown in the office.  I toured the infusion center with my wife.  I was told in about 2-3 weeks that I would have my first infusion of IVIg.  Prior to me seeing the new immunologist, I went for a followup with my other immunologist @ UC Health, my test results showed that my IgG dropped by 100 points, his reponse being:


“This could reflect 1) lab variation or 2) state of hydration.
Remember
we have checked your specific IgG antibodies to vaccinations and they
are OK. The specific IgG values are more important than the total.
That
said, I will place an order for an IgG test. Please have that done in
2-3 months. If it is still trending downwards, you could be seen here
again for further eval.”

Thank god I am RUNNING away from UC Health.  They literally don’t look at factual evidence.  The results of my deep dive test came back and showed that I am deficient in:

Overal IgG 429-600 (Low) (Taken Between 9/2/2018 till now)
Overall IgM 23 (Low)
Overall IgA 189 (Normal)
IgG Subclass deficiency in both 3 & 4
IgA Subclass 2 deficiency

My new immunologist said “I am textbook CVID, and I am appalled by what UC Health did, however, I will make sure you get on IVIg like it was 10 years ago yesterday”.  After hearing that, I broke down.  Finally someone listened, someone cares, someone will help me.

Oh funny, I sent the results to my old immunologist, and i just got a response from him:

“Yes. The question is do you need IVIg. Some docs may put you on this.
From a risk:benefit ratio question, I felt this is not indicated for you at this time.
If this new doc wants to do this and can get it approved by your insurance, I understand.”

Now that I have sort have caught you up on how things have been for me, going forward, this will just be a place for me to rant, explain, complain, whatever going forward.  This has been a very very long journey for me. 

I would like to take the time to thank my wife.  Who without her, I would not be here today.  I devote my entire life to her as she is my best friend, and also the one I love.  She has taken care of me in ways that I cannot describe.