Can I just say that from personal experience...

Nurses General Nursing

Published

Specializes in MS, LTC, Post Op.

Stevens-Johnson Syndrome is about the most painful thing I have ever experienced!

I had posted about having a reaction to cardizem about...2 and a half, three weeks ago. Well the rash progressed to SJS, which landed me in the hospital for 10 days. I lost over 30 percent of exposed skin...I don't remember the first three days of being in the hospital. I remember being life flighted from the hospital that I work at and I remember getting to University of Cincinnati hospital and going their burn ICU and getting my back cleaned and the incredible amount of pain that went with that.

Let me tell you, the nursing staff at UC was WONDERFUL. I didn't have a bad nurse in the bunch!

I am still peeling skin wise. My hands and legs still...most of my open areas are healed up.

It was the worst experience in my life.

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Specializes in home health, dialysis, others.

I am so, so sorry for you, but pleased that you state you had wonderful care.

Just today there was an article about Manute Bol (former NBA player) who died from kidney problems and SJS which developed from a medication.

Take care, and best wishes.

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Specializes in ICU, M/S,Nurse Supervisor, CNS.

Sorry for the SJS, but glad you at least had a good experience in the hospital while suffering with such a painful condition. Good luck to your continued healing.

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Specializes in Medsurg/ICU, Mental Health, Home Health.

So glad to hear that you're doing better. It sounds like a terrifying experience. I know I hate being the patient!

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it sounds like you have a ways to go before complete recovery.

take all the time you need, to heal physically and emotionally.

(((gentle hugs))), shannon.

leslie

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Specializes in A myriad of specialties.

WOW my heart just aches for you over that experience! I remember years ago working with a pt in LTC who was suspected of having that syndrome; just about made me cry every time I worked with her.

Tell me though, why is it that you couldn't have just been "knocked out" at the Cincinnati hospital when you had to have your back cleaned? Dang, I can't IMAGINE that your pain was EVER controlled during that.

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Specializes in Specializes in L/D, newborn, GYN, LTC, Dialysis.

Hang in there and I wish well!

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Specializes in multispecialty ICU, SICU including CV.

I am so sorry you had to go through that!!!! It is good that you are on the mend now.

I had a one-in-million, malpractice-y-ish error when I had my tubes tied a few years ago. I hemorrhaged --> found out after the fact that they missed my tube after the path came back on the specimen. They likely severed a small vessel in my abdomen.

My OB (that did the surgery) says like this kind of stuff only happens to people with initials after their name (RN, MD, etc.) It sure does seem to work that way!!!!

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Specializes in ICU, PICU, School Nursing, Case Mgt.

Oh Sweetie,

I hope that the SJS did not affect that beautiful face of yours! :)

That thing is a real bear, I worked PICU for years and we had a beautiful little 10 year old girl that came in with SJS after a reaction to Advil....

It was heart wrenching. She too peeled, and peeled, and peeled. She made a full recovery, but she was a sick little kiddo.

God Bless You! :redbeathe

You will be in my prayers tonight.

s

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Specializes in Medsurg/ICU, Mental Health, Home Health.
Oh Sweetie,

I hope that the SJS did not affect that beautiful face of yours! :)

I know, Shannon's so naturally beautiful!

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Specializes in MS, LTC, Post Op.
WOW my heart just aches for you over that experience! I remember years ago working with a pt in LTC who was suspected of having that syndrome; just about made me cry every time I worked with her.

Tell me though, why is it that you couldn't have just been "knocked out" at the Cincinnati hospital when you had to have your back cleaned? Dang, I can't IMAGINE that your pain was EVER controlled during that.

I dunno why I was still awake even! I'd had 100mg of versed and 100mg of benadryl in the 45 minute flight in, and dilaudid twice before I left and I don't take anything stronger than klonopin.

things are still really...fuzzy for me. I remember bits and pieces of things. Like I remember flying...but I don't remember going out of KDMC or getting into the helicopter, or even out of the helicopter at UC. It's like I remember being loaded up on the cot and then the next thing I remember is flying over cities and trying to place myself. Then getting transferred from the stetcher to the bed and being rolled to get the stuff out from under me and them checking my back.

I dunno if any time elasped from them rolling me, to them looking at my back and cleaning it off. I just remember screaming and trying to scoot away from them, which is impossible with a side rail up I found :rolleyes: , and telling them not to use a wire brush on my back :lol2: and them letting me feel the gauze sponge they were using and then I was out again.

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I am so sorry you had to experience this. I hope you really are on the mend.

Ironic that I am reading your post. I first heard of this reaction about a week ago while volunteering at a free clinic. The patient came to the urgent care after having been on antibiotic for a respiratory infection. Within a day or two she started to have a reaction that affected her mucous membranes and her skin. Poor gal. When she was in the prior week to get help for the respiratory infection, she stated she was allergic to sulfa for the same reason. Unfortunately it appears she is also allergic to more antibiotics.

It sounds like a terribly uncomfortable and frightening thing to experience. My best for a full recovery!

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