- Personal Health Information & Self-Help
I Could Have Died! Surviving SJS/TENS Stevens-Johnson Syndrome
These are chemical (medication) burns from the inside out #SJS/#TENS
These postules start from the INSIDE and show on the outside.
The author Dan W. Miller writes down his thoughts, fears and the pain the day after leaving the VA hospital
Hello. On the 26th of November 2008 I started a horrendous ordeal that nearly killed me. I had a major reaction to medication that was prescribed to me. Sulfa. I just got out of the hospital yesterday (12/5) after eight days of hell. The reaction to the medication is so severe that they have a name for it - Stevens-Johnson Syndrome Disease.
No, it's not contagious but I run the risk of infection daily. Look it up on the Internet. Scary! 1 in 4 die. Blindness is not uncommon. Luckily, so far, the disease stopped short of that. Am I scared? Of course. What's going to happen to me? Will I die later, suddenly as I lay in my condo all alone? Or slowly in pain as my internal organs cannot recover from the scorching they have received? My poor cat cannot understand why I can't pet her.
So Dehydrated They Can't Find a Vein
Initially, I was so dehydrated, no one could get any blood out of me and the E. R. staff almost resorted to sticking a (huge) needle into my Inguinal ARTERY (deep in my groin) just to get a blood sample. I had to refuse that one. They finally got some blood from a small vein that I had pointed out to them and I knew would work.
I'm a former U.S.N. Hospital Corpsman. I also knew a blood pressure of 40/20 cannot go much lower without cardiac arrest. I'm watching everything the emergency room staff is doing. I've worked in a few of them before. But it's starting to be difficult to stay fully aware.
(Much later, five years to be specific, I hear from one of my nurses that the staff did not know exactly what was wrong with me and an official diagnosis was not made for over twenty four hours. Staff at shift change briefings just refer to me as "The Red Guy." I've also noticed on subsequent visits to that second floor ward, the corner room I occupied is a sort of "dying room." Patients of ALS Lou Gehrig's disease and severe compromised breathing with limited life expectancy are alone in there.)
Learning To Live With It
Right now over 75% of my body is blistered just like a burn victim. Some blisters have not popped and others have. I have bleeding, open sores all over my face. (I guess I'm growing a beard!) But the worst part is that the inside of my mouth and throat is a peeling and re-peeling bloody mess. My lips are either crusted over with blood or waiting to be sloughed off to bleed and crust over again.
Showering is just excruciating because even water stings like crazy when it touches any affected areas. I've had one painful two minute shower in the hospital. Don't know when I will be able to tolerate another one. The doctors wanted me to get stabilized enough so I could get out of the hospital as quick as possible and avoid any nosocomial infections (infections picked up inside a hospital).
Needless to say eating is not an option and drinking is a painful effort. Just putting a straw in my mouth causes irritation to the skin, mouth and throat. Any foods with any kind of flavoring or stinging component in it, just send me through the roof. At times it's difficult to move my lips to even speak.
Patients of SJS eventually make a full recovery with very minimal scarring. I'm a very, very long way from that. In fact it looks worse than earlier in it's initial stages but this is part of the disease "running it's course." I had a constant stream of doctors, med students and nursing students documenting my case for their medical journals, thesis and school study material.
Luckily, I received optimal care from the V.A. Hospital in Phoenix. I am a Desert Storm War Era Veteran and never dreamed I would be qualified nor did I know I was eligible to receive the benefits I was entitled to. Thank God, because they saved my life!
Update to "I Could Have Died" Two Years Later
To feel pain is one thing, but when it's your entire body inside and out, is a constant torture. For about six months I could do nothing but live. Just breathe, eat, drink, etc. Open, bleeding blisters were most prevalent on my upper torso. I had some sores below my waist and only one on my private part but not nearly as many as on my back, chest and internal organs. I would just lie on a silk blanket with creams slathered on me.
The next six months was spent learning to walk for about 100 yards without being in too much pain. I was so happy when I could finally lay down in my bed and attempt to sleep after eight months of sleeping sitting up in a lounge chair.
I couldn't eat anything with any flavoring because it would excruciatingly sting the inner open sores in my mouth and esophagus. Vanilla was horrible! It was just bland tapioca and I eventually worked my way up to real mushy french toast. My inner lining of my mouth peeled daily for four months and I would spit out blood and skin.
Think of a chemical peel from the inside out. Taking a B.M. was excruciating (chemicals going past open sores, especially around openings like my mouth and anus.) I would just hold on and scream in agony during my daily B.M. for over a year and a half. Then lie in a fetal position of pain for usually up to three hours. Nearly all of my fingernails and toenails fell off.
Looking Ahead To How My Life Has Changed
It's very self-evident I am just not as in as good a shape as I used to be. Lay still for 6 months straight. Muscles will atrophy. I have no feeling at all in the balls of my feet. I had a blister on my foot from walking one day recently but didn't know it until I saw blood on my sock.
Toenails and fingernails have this weird split down the middle. My big toenails are a hideous bumpy discolored claw. My skin is just a bit more sensitive all over. On the good side, my sisters noted that my face looked younger. That's what happens when you get an unwanted chemical peel for your mug.
I believe having been in tremendous health before that fateful day in November of 2008 probably helped in my survival and recovery. I was a young man of 50 when this all began. Just glad to be here and able to tell you my story.
Dan W. Miller aka The Vanilla Godzilla ©
UPDATE: 13 months after my initial SJS/TENS diagnosis celebrating at the Scottsdale New Year's Eve Block Party
Fight Club (1999) This is what happens inside the body of an SJS/TENS victim. A chemical in the drug and the body's mucous membrane system combine to cause excr
Living is so much better than dying
Have you ever been really close to dying?
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