Not Good

Had my appointment today with the face/neck/mouth ENT, since I saw my ear ENT back on 4.15. Upon evaluation via endoscope, it was visually discovered that I am currently suffering from a viral infection known as shingles in the inside of my ear, and face and mouth which is an affect from the bacterial/fungal infection. The safety labs drawn on 4.17 indicate my body is fighting something. Currently my white blood counts are back up to 20 which indicates severe infection. 

My throat specifically is severely swollen and is exhibiting clinical findings of severe angioedema most likely due to what’s going on in my ear/mouth. 

On top of that I am also showing all signs and symptoms of a massive systemic fungal infection as well. 

With this trifecta of a bacterial, fungal, and viral infection in my face, throat, ear, mouth, this is starting to wind up my Mast Cell disorder (MCAS). If the mast cells all get activated at once, I will have an anaphylactic reaction which requires immediate intervention of an EPI pens I carry, and immediate medical attention.   

This is all stems to my Common Variable Immunodeficiency. Most, if not everyone knows about where I receive Immunoglobulin replacement therapy (IVIG) every 3 weeks to essentially provide my immune system a fighting chance, as I do not produce competent anti-bodies critical to finding pathogens. 

This will most likely render me into anaphylactic shock, if I am unable to do the Epi pen myself, please note below how to do it:

There is always one on me in my right pocket, and in the upper portion of my backpack I carry around to and from work. 

!!!!!!! To Administer Epinephrine !!!!!!!

Remove the pen from its case, remove the forward/rear safety’s, and dispense it into my upper thigh through my clothing / pants. Once you forcefully push it against my thigh, the pen must stay in me for 8 seconds to receive the full dose of Epinephrine contained in the pen. 

Once administered by you or myself, you need to get me to the nearest hospital should an anaphylaxis event occur which required an emergency epinephrine intervention, by you, or by myself. I am allergic to sulfa antibiotics, gold, and cobalt. Call 911 and stay with me until paramedics arrive. 

Under no circumstance is anyone to give me opiates as I am on pain management and we do not need to introduce another problem. 

My emergency contacts are:

Agnieszka Bielawska (Spouse) – 312-927-6273

Mike Benner (Friend) – 303-345-5429

I have a Baird portcath power-port with is placed in my right shoulder, and I have 2 stents placed in my Left Anterior Decending Coronal Artery. 

On top of the vestibular migraines in my left ear, I am getting vertigo now.

I was told to stop all steroids, stop Augmentin. Start the following to combat this trifecta infection:

% New Medications %

Avalox Antibiotic 400mg daily

Posaconazole ER Antifungal 300mg daily

Acyclovir anti-virus 4g daily

This must be daily/weekly for the next 4 weeks. Then taper back to maintenance doses of antifungal/antiviral. Discontinue antibiotics. 

Today I had an MRI of my Head/Brain to determine any structural involvement of the infection which would require surgical intervention by both ENT’s (face),and (ear). I’ll have results soon. This will ensure nothing “else” is going on as well. 

In parallel, my Immunologist who treats all my immune disorder dysfunctions, will need to start me ASAP on both Ruconest (HAE High probability) for immediate immune intervention, and Dupixent for modulating my immune response pathways to prevent my Mast cells from firing together sending my body into anaphylaxis.

I am also taking low dose ketamine for immune related things, and this is most likely what’s holding my body back from exploding to Jupiter as this is an anti-inflammatory medication prescribed to me already on the suspicion of HAE/Severe MCAS. 

I am ok. I am not afraid. I am calm. Please do not worry. Everything will be ok. I felt it necessary to share this with anyone who will received this text from me, that sees me on a daily basis, or is in a need to know. 

I am however dealing with severe pain due to the pressure changes in Denver, the close proximity of the infection, the constant vertigo, and vestibular migraines.  I am wearing my AirPodMax headphones when in public to prevent sound hurting my missing mastoid in my left ear. 

I have everything planned out. I will get through this. I promise. Just please be patient with me over the next 4-8 weeks.  Just remember, you are all apart of my life in a very significant way. 

Please take the time to read this, save it, and ask me questions regarding this. This is just a precautionary thing for now. 

All my best,

John

( Father | catdad | devoted_husband | friend | family | coworker )