Pigs Fly Part 2

Harborview Medical Center in Seattle is the Level I Trauma and Burn facility for four states.  In January of 2004, because I worked for UW Medicine, I also worked for Harborview, so I knew, from patient stories, about the excellent care they give every day.  I was learn about that care first hand.

When the Drs. said I was transferring to Harborview, all I felt was relief.  Not because the care I had received was lacking in any way.  It wasn't.  But I knew that whatever the problem was, Harborview could handle it.  I don't remember specifically being aware that I would go to the Burn Unit, but on some level I did know that.  Maybe because of the fever, and the fatigue, my mind was consciously tracking some thoughts, but many, like the fact that I had blisters covering more of my body every hour, were below the surface.  Whatever the reason, going to Harborview felt like going home.

When SBX arrived, fortunately before the ambulance, I let her know that they were moving me.  I also asked, again, if she had called in for me at work (she had).  One quick note here - there is a reason, actually, many, that SBX is my ex now, and they are all good reasons.  But she was attentive, genuinely concerned, and supportive while I was in the hospital.  She came every day that she could (snow was the only thing that interrupted this) and sat by my bedside.  And I was well aware of this.  Please do not think I was abandoned.

At any rate, the ambulance arrived.  As they transferred me to the gurney, the medic went a little pale.  I am certain now that I know why, but it really didn't register then.  Stevens Johnson causes burns internally and externally; I had left part of my back on the hospital bed.  The medic very gently helped me move, and then apologized profusely that there was a back board and that he had to strap me down.  He asked several times if the pain was manageable.  Shock being the amazing generator of endorphins that it is, as I recall the pain was not too bad.  It was only when the pain was relived later that I realized just how bad it was.  Harborview was less than ten blocks away; in fact, in that snow-bright morning, it seemed like it could be seen as I transferred into the ambulance.  The drive was quick - I don't remember much aside from questions about insurance.  Then we were in the ER.  A team of four to six people emerged from an elevator and came straight over.  When I mentioned the SJS diagnoses, one nurse shook her head.  "No, this is TEN."

This, at the time, was just confusing.  After holding onto one difficult to remember diagnoses, I was presented with an equally unfamiliar one.  But I really didn't think about it.  I was here, safe, and would get help. I learned a little more a few minutes, and several weeks, later.  But for story sake, here is a summary.

TEN (Toxic Epidermal Necrolysis) and Stevens Johnson Syndrome (SJS) are essentially the same thing.  Both are allergic reactions to a drug - and there are a wide array of drugs that can cause this reaction, such as ibuprofen, sulfa, and anti-convulsives like Lamictal.  If you include all of these reactions to all drugs, the rate is around 1 in 100,000 (though with reporting issues some people feel it is higher).  The important thing to note is that while both reactions are severe and life-threatening, they are also rare.  I had never heard of them - and that is where it would help.  If more people knew the symptoms, and especially if more doctors knew them, we could save lives (most doctors I have met since have heard of SJS, but never seen a case - and only one pharmacist knew what it was when they asked what my allergic reaction was).  Both TEN and SJS attack the mucous membranes - the skin, the eyes, linings of internal organs, nose, mouth, throat, stomach, intestines, upper brachia, lips, ears - these are very widespread.  Both cause burn like rashes, blisters and lesions in these areas, though which area is affected varies on a case by case basis.  If more than 10% of the skin is involved, the diagnosis is TEN; otherwise, it's SJS.  The descriptions, even in the medical literature, are that the patient is burning from the inside out.  In fact, the burn is bi-directional - you are burning outside in and inside out.  Because the mucosa, especially the skin, acts as a barrier for infection, the mortality rate can be high (similar to the mortality rate for burn victims).  For TEN, the rate is 30 - 50%.  There is no way known to stop the reaction once it starts - it has to run its course.  Supportive care can be given, and burns can be treated as burns (though often the damage continues under the bandages until the reaction stops).  The skin, and other affected tissue, burns, dies and sloughs off - frequently in sheets, which is what happened to my back when I transferred beds.  If I haven't made this clear enough, it is not a pleasant sight in the least.  Getting patients to a burn unit significantly increases the chance of survival.  Early symptoms can be as simple as extreme fatigue (as I had), followed by fever, a target-like rash, blisters and lesions.  Corneal tears are common; 40% of survivors are blind in one or both eyes.  Harborview, as a level I burn center, was the best place in Seattle to be.  Harborview, as a leader in burn research, is, I believe, probably the best facility to go to in the US - however, UCLA and Harvard also are quite amazing.  Over 75% of my skin was affected at the point that I was admitted.

The triage team assessed this, then a nurse and nurse's assistant took me to the tank room - a room equipped with tables and a hydrotherapy tank for wound care.  While there, the nurse talked to her assistant, Adam, about the difference between SJS and TEN.  She also asked me what I knew about the procedure - having worked in an office where articles were written about burn treatment, we agreed I probably knew more than I wanted to ... Which was not quite true.  I focused on everything she said.  It helped keep the pain at bay.  She started me on an IV, giving liquids and pain meds, and she was amazing at evaluating when I needed more.  This was when I really knew how much pain I was in - the relief was unbelievable, and when the pain started to come back it was unbearable.  I would just start fading, wanting to curl up in a ball and escape somewhere.  My eyes, from the corneal tears, were still quite painful and I kept them shut most of the time.  To promote healing, they use either artificial skin or pig skin - again, Harborview is one of the pioneers in researching this.  They remove the burned, dead skin, debriding it, and apply, in my case, the pig skin over it.  The pig skin acts as a bandage, preventing water loss and infection.  The tank room is kept very warm, since skin also helps regulate heat.  Between that, the pain, and my eyes, it was only by focusing very carefully on the conversation between the nurse and Adam that I was able to stay conscious.  We went through one roll of pig skin and they got out another.  While it thawed, I finally passed out.

I was intubated, and kept in a coma for the next three weeks (though I do remember a surprising amount of this time ...).