My battle with Toxic Epidermal Necrolysis

On July 25th, I was hospitalized until July 28th in Athens for a pre-existing health condition, combined with exhaustion, stress, and dehydration. Basically, I wasn’t taking care of myself or my health. (Please remember this is the most important thing, everyone! Treat yourself right!) The doctors wanted to keep me longer, but it was my mom’s birthday and I begged for them to let me go. They prescribed me with two medications and a social worker who would coordinate nutritionist and other doctor appointments for me until I was okay enough to do so on my own (God bless her).

However, I expressed extreme disagreement with one of the medications I was prescribed. I did not think I needed it. I have been on medication after medication for years trying to fix the problem, and my experiences have made me very wary of prescription drugs. The doctor was very adamant that this medication would help me. I was desperate for a cure and not in the right mindset to think clearly about this decision from all the drugs they had me on when I was there, so I just shut my mouth and agreed. DO NOT DO THIS. I should have kept arguing, I should have had more time to think. I could have saved myself a lot of trouble. My doctor asked “are you of Asian descent?” I gave him a look and replied no. He said “I didn’t think so, just making sure, because they have really bad allergic reactions to it.”

On August 6th, I was shopping with my mom. I kept feeling too weak to walk and was FREEZING to the point it was unbearable. I brushed it off as being a side effect of my chronic illness. On August 7th, I had flu like symptoms and a fever. I was so delirious from the fever I was doing odd things around my parent’s house. I had picked up my dog and went shin deep in our pool with my socks and clothes on. My dog is terrified of water. I also was eating jelly plain with a spoon, and took an old soggy cucumber and was taking bites of it and putting it back in the fridge. My parents told me to cut it out and go to bed. The next morning when I woke up I KNEW something was horribly wrong. My brain was foggy, and there was a rash on my chest. During the day I got worse, and the rash had spread to other places on my body. I was supposed to drive down to Athens that day and move into my new apartment.

One of my dad’s best friends is a doctor and he came to see me at our house before I left. I owe my life to him, honestly. His first reaction: this is an allergic reaction to medicine. I showed him my new prescriptions and his second reaction was: stop taking this. The dosage is way too high. He checked my mouth for sores, and since I didn’t have any he said I should be okay. He then told me this medicine sometimes in rare cases causes something called Steven’s Johnson syndrome. He warned me to be very careful if I had any sores in my mouth or nose. I looked up the disease, horrified at the descriptions. I made sure I knew the ins and outs of it, and stubbornly went on my way to move into my apartment. My parents ended up moving everything for me since I was too weak. I was passed out most of the time on the floor. They were reluctant to leave me, but knew I had my mind set on going to work tomorrow and they couldn’t convince me otherwise.

My rash got worse. It spread all over my face and over every square inch of my body. I was unrecognizable. Everything was swollen and inflamed, and horribly itchy. I had a report I had to turn in for work so I went through two tubes of ivarest trying to dull the pain. I couldn’t eat anything. ‘My nutritionist is gonna kill me!’ I thought. I had no clue I had bigger problems coming to worry about. Thursday night I had sores all in my mouth. On Friday morning, the day I had a report due for work, I woke up and my throat was swollen almost shut. The only reason I wasn’t panicking was probably the delirium, because I knew I had Stevens Johnson’s at this point. I went to a local urgent care where I calmly walked in, ignoring the gasps at my appearance: “Hi I need an IV fluid bag. Also my throat is swollen shut. I have Stevens Johnson’s syndrome.” Not one doctor there knew what it was. Crazily, not one of them questioned me about my self-diagnosis. They gave me a few shots to open up my throat and started my IV. I finished my report and sent it to my boss sitting in the hospital bed. One nurse came in: “Can I touch it? I’ve never seen a Steven’s Johnson’s patient before.” I assured them all I was okay, I could leave since my IV was finished. I got prescribed 3 other different medications for the pain and sores and went home.

On August 12th, I woke up and the rash had spread all over my hands and feet, my mouth and nose were filled with sores, and I was in so much pain I couldn’t think. I just knew I had to get help fast. I finally was in panic mode. I texted my mom that I needed to be hospitalized. She said she was going to come get me but I said I don’t have time, I need to leave NOW. I jumped in my car and drove 90 mph all the way back to North Canton. I have no clue how I didn’t get pulled over, or how I didn’t pass out. I don’t remember the drive at all, or pretty much anything after this point. I made it to my parent’s house where my mom was waiting outside. She asked me some questions but I proceeded to get out of the driver’s seat and fall on the driveway. She put me in the backseat and sped to the hospital in downtown Canton. It was clear that no doctor there knew what to do, or had ever seen this before.

After a few days in the ICU it had progressed to toxic epidermal necrolysis (over 70% of my body was burning from the inside out) and I was transferred to an intensive care burn unit in Akron, where they had specialists in this disease. The nurses were all so pleasant and kept me as comfortable as possible. Every little touch bloodily shed my skin away. I had blisters everywhere. I couldn’t go to the bathroom, or walk, or think, or stay up longer than a few hours. I bawled my eyes out whenever I smiled or had to brush my teeth, I was in so much pain. The arm with the IV in it was so bruised and so painful whenever I moved my arm. I was wheeled to a tub everyday where a forklift thing lifted me into a tub covered in plastic, where three nurses would dab my skin with washcloths to keep the open wounds from getting infected. Every dab sent layers of skin down the drain. I was at such a risk of infection that some flowers someone sent me couldn’t get sent to my room because they were potted in dirt. Everyone that entered my room had to go to a special room and clean themselves and put on some gown thing to reduce risk of infection. I was pretty much bubble girl, and I looked like a zombie. I don’t even want to describe what I had to do about the blistering around my genitalia.

I was in such bad shape, and I was in too much pain to eat. This was so hard because I was on a special diet of a million calories and a trillion grams of protein to regrow my skin. I powered through. I drank a million protein drinks a day. In the middle of the night when I had to go to the bathroom, I decided I didn’t want to wake my mom up to help me pee in a stupid pan anymore. I stood up and WALKED to the bathroom and did it myself. The next morning when she was awake she was stunned when I got up to go again. My doctors weaned me off the morphine and I was able to go home on bed rest while the rest of my skin fell off. I’m still so weak, and my skin is overly sensitive to EVERYTHING. But I am alive. I was told I would lose my hair and nails, and most likely my eyesight, but I got lucky.

And I would hurt to see someone be unluckier than me. A doctor I saw after all of this told me I never should have been prescribed the medicine, it was a misdiagnosis. EDUCATE BEFORE YOU MEDICATE. Please watch out when your loved one begins a new medication! And share this! I want my story to be heard. I want to save a life. Know the signs. Allergic drug reactions are the 4th leading cause of death in the US. It hurts my heart to hear about the Steven’s Johnson’s cases where the doctors didn’t know what was happening, and didn’t stop the medication, which led to the death/decline of the patient. And I could have prevented all of this if I had listened to my gut.

 

http://sjsupport.org/

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4 thoughts on “My battle with Toxic Epidermal Necrolysis

  1. Our daughter went thru this in March/April in Pittsburgh. She turned 15 in August. We were sooo very fortunate a pediatric doctor caught in after an initial diagnosis of Scarlet Fever. She had SJS/TEN with about 40% of her body affected. Was awful as a parent to watch. Anything we can do to help, we will. She is back at school now and SO VERY LUCKY not to have eye damage, etc. Her skin is still a little splotchy and blending in, but getting better in time. She DID lose her nails, all of them, but they are coming back. Her cause? Simple ibuprofen.

    Liked by 1 person

  2. I am so so sorry. We are survivors together. What drug did this to you? I too want to make doctors and patients aware of SJS. Let’s try to work together. The world needs to know.

    I’m in my 7th week since onset and am healing slowly. SJS has changed me forever. I am looking to bring some good from a terrifying ordeal that didn’t need to happen. I could have taken tart cherry juice instead if I had only said no.

    Like

    1. Lamictal. I suffered an eating disorder relapse the end of July that required hospitalization. The doctor evaluating me thought putting me on a mood stabilizer would be a last ditch effort to fix my long drawn out battle with eating disorders… I’ve been on medication after medication and tried cure after cure so I didn’t think it would hurt to try one more. I agree. I don’t want this to happen to anyone else. Just this weekend I had to be hospitalized because massive bruising formed all over my body overnight and they thought I was internally bleeding.. they kept me for a few days and couldn’t figure out what was wrong, and just chalked it up to a side effect of my TEN. I had to medically withdraw from my classes 😦 SJS is setting me back but I refuse to let it ruin my life. My number is 330-936-6267, feel free to text me to just chat or if you have ideas. We have to make people aware!

      Like

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