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The unseen hand

I have spent a lot of the last several weeks trying to navigate the dark waters of mid-level care for a rare disease patient.  It is one of the trickier aspects of life with a disease like mine.  I need care and need providers to be cautious but I also need them to not be scared of my disease or they could refuse care.  When I’m shocking or having a serious medical event, it’s not really an option to refuse care.  But when something is serious but not life threatening, I have to tread carefully.  It requires just the right amount of education given confidently.  The tiniest twinge of voice, a catching of my breath while I’m talking about my disease, and they could easily walk away.

I got my tooth removed on Tuesday at a dental office in the same hospital where I receive all of my care.  The dental team was very good and took my special requirements in stride.  But I realized pretty quickly that this extraction was going to be harder than I had expected.  All told, it took three people two hours of actively trying to extract the tooth to achieve success.  EDS patients are often insensitive to anesthesia and they stopped several times to renumb everything.  There was some bleeding and a bit of bruising but nothing that felt inappropriate given the nature of the procedure.  I went home with an order for antibiotics and ketorolac.

My mouth hurt a lot Tuesday night and Wednesday but the pain didn’t feel disproportionate to the violence of the extraction.  I slept a lot and iced my jaw.  I could eat gingerly and talk.  Overall, I felt okay.  Not great, but okay.  I ironed work clothes on Wednesday night and got everything together to return to work on Thursday morning.

I woke up Thursday not because I had to work, but because of how badly my face hurt.  I had medicated before bed and it should not have worn off by that point.  I knew right away that something was wrong.  I flipped on the bathroom light to reveal flushed cheeks and glassy eyes, my hair matted to my forehead with sweat.  I put a thermometer into my mouth and started putting things into a backpack as the numbers climbed precipitously.  I had a fever of 103.2.  In less than an hour, I was in the emergency department of my regular hospital.

Dental procedures somehow manage to masquerade as routine despite the fact that they take a lot of skill to perform safely and that some of them are inherently risky.  Though the guidelines have been revised in recent years, many patients are still recommended to premedicate with antibiotics prior to dental work.  The reason is that it is very easy to transfer bacteria from the mouth to the bloodstream, even when all appropriate safety measures are followed.  If you have an artificial heart valve, or certain other conditions, there is an increased risk that these bacteria will become a true bloodstream infection, which is very, very serious.

The emergency department took me in right away.  I am always nervous in emergency departments because I have had a lot of trouble in the past, but everyone was great yesterday.  They knew about SM, they knew general guidelines and gave me no shit about needing hydromorphone for pain relief.  They were fine with following my home IV orders and using my port.  They worked together with my mast cell specialist, primary immunologist, dentist and PCP to make sure everyone was on the same page.

The big concern was that I had a bloodstream infection, or at least a bad dental infection, and that it would colonize my port.  My mouth looks fine and my white count is normal (which in itself is unusual, as it has been in the 16-20K range for years).  The port looks fine, isn’t red, tender or swollen, and works fine, which is great news.  All of this is good news except we have no idea why I have a fever of 103.

My doctors are generally fine with me handling things on my own at home, so I didn’t protest when they all said I should be admitted.  There is concern that because of some of my medications (like prednisone and Enbrel) that my bloodwork won’t show that I’m fighting an infection until it is severe.  So they admitted me to a surgical floor where I have been before and I’m just hanging out for a few days until we are convinced my blood cultures are truly negative.  The care has been excellent and there has been no bullshit about how I dose my meds, how often I use IV meds, or doing things the way I want them (dilute and slowly, as a rule).

I am on a stronger antibiotic as a precautionary measure, but I expect to have negative blood cultures and to go home in the next day or two.  The most plausible cause of this sudden high fever is that transient bacteremia, in which some bacteria from my mouth entered my bloodstream during the extraction.  My body then generated an immune response and was able to keep these few bacteria from becoming millions of bacteria in my bloodstream.  It’s basically a best case scenario.

I used to develop diagnostics for bloodstream infections.  I develop molecular diagnostics and have for several years, but my training is in microbiology and my focus was infectious diseases.   When I realized this tooth needed to come out, my biggest concern was that the tooth would get infected and I would get a bloodstream infection or that bacteria would be transferred during the extraction and I would get a bloodstream infection.  Most of the time, the most serious risk associated with a procedure I need is that I will have anaphylaxis.  This was different, and the way it played out proved that I was right to worry.

In the weeks leading up to getting this tooth removed, I talked to people in several dental/oral surgery offices, including the one where I was treated regularly for over fifteen years.  Some of the realized that I was not trying to be ridiculous and that there were rock solid reasons for me to want certain materials to be used, certain meds to be avoided and so on.  But, as there usually are, there were also several people who just thought I was being particular and difficult.  When people think this about me, they usually believe I have an anxiety disorder and that my need to control things is an extension of that.

And when they say to me, “You can’t control everything” with a snotty lilt on the last syllable, it’s not a bitchy imparting of a common adage.  It’s a warning.  For me, not being able to control everything could be catastrophic.  In some instances, it could be fatal.

The need to understand the entire procedure and know everything is not something I relish.  It is exhausting and scary.  Even when everything is done right – like my extraction on Tuesday – there are still risks.  There is still an unseen hand that can push us over the edge for no reason at all.

I have a short speech that I give to every single provider I meet who has not met me before.  It starts with, “Before we get started, I have a mast cell disease.  Have you ever treated anyone with that before?” I hit all the high notes briefly and tell them I will be using my Epipen first and then asking for help if I anaphylax, not the other way around.

Tonight I gave my speech to a new nurse.  We chatted about mast cell disease for a while.  “Does it bother you?  Having to teach everyone about this?”

It doesn’t, but if it did, it wouldn’t matter.  It’s my only chance to stay ahead of the unseen hand.