WARNING: This is a long post. I meant to share this last year but never got around to it. So here it is now. My story on when I got sick last year. Probably the scariest time of my life...
September 28, 2017- I woke up thinking I was starting to get sick. Ugh. Who likes being sick? It was kind of hard to breathe, I felt sluggish and thought I was starting to get a fever. It was Thursday and also the last day of the training class I was in for work. I got up and got ready to try to survive the day. I wasn't going to let a cold stop me.
For the last day, we spent the morning just going over one of the loading systems we use and then after lunch we were going to end the class with a class evaluation. Being a seasoned AMMO troop, I stood off to the side so the younger, newer members could get more hands on training. Half-way through the morning, I started to feel a weird sensation in my left arm. It also was harder to breathe than it was when I first woke up. Noticing this, I started thinking about the Grey's Anatomy episode that mentions how heart attack symptoms in women are not always the ones you learn about. Freaked me out.
I remember standing there, watching the instructor and thinking, "what if I'm legit having a heart attack and here I am..Just standing in the bay.." I tend to overthink things, so I decided I was most likely being dramatic. Maybe due to being bored enough that I started imagining symptoms.
Now it's lunch time. I go home and decide to try and eat ramen. Wasn't in the mood. I had zero appetite. I didn't eat much of a breakfast, so I found it very strange I didn't want to eat. Decided to spend the rest of my lunch taking apart one of our legos. As I sat on the floor, disassembling a bridge, I noticed it was still hard for me to breathe. Sitting down made it even harder. I had to straighten my back to be able to get a good deep breath. Since I felt worse than I did that morning, and not being able to eat, I decided after the class evaluation I would go to the ER.
In the ER. I believe I weighed about 170 lbs about this time. I had a fever and got X-rays taken. After about 2-3 hours, the ER doc came in and told me that it looks like I had pneumonia. Well shit. I haven't had pneumonia since I was like 7. Sent me home with an antibiotic and told me to rest.
I told my mom what the doc said and tried to quarantine myself in my room. Joey was about to turn one. Which meant that his cleft palate repair surgery was coming up. So I didn't want to get him sick. Reece made me soup and I couldn't really eat it. Feeling annoyed I still wasn't hungry, I decided to just sleep. Woke up in the middle of the night feeling REALLY hot. My eyes were red and burning..but it felt like a dry heat (if that makes sense). Again, just different than they usually do when I have a fever. My lips felt swollen and SUPER hot. So I went to the bathroom and used a washcloth to put some cool water on my mouth. I noticed my chest had some red spots. I assumed those were from my fever.
Went back to sleep. Woke up a couple hours later, feeling the same. Went back to the bathroom to use the washcloth. This time I noticed my lips looked like there was pus or something in them. Wtf. My eyes were also redder. Since it was morning, I decided to go downstairs to try to make something to eat. My mom looked concerned and told me my face looked really swollen. My fever was still there and I just felt like shit. So I called Reece and asked him if he could leave work for a bit to drive me to the ER.
September 29, 2017-Back at the ER, It was a little hard to talk with my lips swollen. My fever was still high and according to the scale I lost a little weight overnight. They hooked me up to stuff and gave me a blanket. I was freezing. I felt weak and just wanted to know what the hell was wrong with me. The PA they sent in to ask about my symptoms seemed a little confused about what I might have, so she grabbed the ER doc He really looked me over as I talked about how I felt again. That's when he asked about the spots. The red spots I noticed in the middle of the night had gone from just being on my chest to now all over my chest and going down my arms and legs. I had a rug burn like scab on my back from a pumice stone being used too hard in the middle. When he looked at that and touched it, he knew what it was-Stevens Johnson Syndrome (SJS). To be sure, he called for the on call dermatologist.
If you don't know, basically, SJS is an allergic reaction to medication. Any medication can trigger it. There really isn't a cure. You just have to stop taking whatever might've triggered it and be monitored. SJS affects your mucous membranes in your body (eyes, lips, etc).
Due to the seriousness of my condition, I had to be moved to the local hospital and put into the ICU. Overnight, my skin went from just having red dots everywhere to having blisters on about 40 percent of my body. Alaska doesn't have a burn unit and when you blister that much, they can't care for you. Blisters get treated like burns. So I had to be transferred to Seattle, WA.
September 30, 2017-I stayed at Harbor View Medical Center. I had to stay in the Burn ICU. I remember arriving and being surrounded by nurses. They had to clean me up and put a type of gauze all over my blisters to help them. I cried and just tried to breathe through it. After that, I went to sleep. In the morning, the docs came in and talked to us a bit about my condition. They told me that I had SJS with TEN (toxic epidermal necrolysis). Basically, my skin was not happy. They told us what the plan was: that I needed to have a graft applied over my skin, most likely get an intubation tube put in and possibly get my eyes sewn shut. Sounds like a lot of crazy things. Let me break it down a bit on the whys..
So I needed to get the graft applied all over to help my skin heal. They gave me the option of pig skin or some other kind that I have now forgotten. I chose the pig skin simply because they told me it was so far the best treatment they've seen/used for burns. To do that they would scrub me down, essentially pop my blisters and then they stapled the pig skin to me.
Intubation tube. Like I mentioned before, SJS affects your mucous membranes. Since the day I was told I had pneumonia, it had gotten harder for me to swallow. So they said that depending how I felt by the time of the surgery, they would put an intubation tube in so there was be an open airway in case my throat kept swelling up.
Eyes sewn shut. Ophthalmologist came in to look at my eyes that Monday. They noticed I had a small scratch over my right retina. So they said they would place amniotic sacs over my eyes and sew them shut to prevent any more irritation and to let the scratch heal. Initially, they like to keep them sewn shut for two weeks.
My surgery took place two days after I arrived at the hospital. I just had the pig skin and tube down. During the surgery, they also had to shave my head to prevent any infection. I had pig skin all over my upper body. I remember it felt like was wearing a shirt. The red dots on my lower body never turned into actual blisters.
I used a pen and paper to communicate since I couldn't talk with the tube in my throat. I think later that first week, the Eye Doc decided to put in the amniotic sacs because the scratch got worse. I remember waking up after that procedure thinking I was in a whole different room and freaked out. I kept asking my nurse if I could go back to my room. I was on a good amount of drugs at this point. I started "seeing" things. I think a couple days after getting my eyes sewn shut, I was able to get the intubation tube removed. That was super scary.
I had mentioned to Reece that I was "seeing" things. The nurses started doing small tests with me to make sure I wasn't going crazy. After being there for over a week, I think almost two weeks, they started having me sit up. I never thought sitting up could be so draining. But then again, I've never just laid there for over a week. After I adjusted to sitting up, I had to start walking. First it started with walking a short distance from my bed to a chair. Then eventually having to do a lap around the unit 3 times a day.
The pig skin got removed slowly. IT would get cut off as it dried up. The nurses would come by for "wound treatment" every day. That was when they would see if they could remove pig skin and also give me a "bath". I would have to mentally prepare myself for the pig skin removal. Some moments felt amazing as they were able to itch the new skin underneath. Most moments were hardly bearable. Those moments were when they had to remove staples. Eventually they got all the pig skin off. At that point, I was stronger and able to walk to the shower room. Where I just sat on a cold ass table and got more of an actual bath.
After just over 2 weeks in the Burn ICU, I had gotten to the point I could be moved to the other floor. When they moved me, I also got my right eye back. They took out the stitches and amniotic sac due to irritation I felt. The scratch was sadly still there. My vision was super blurry. I could make out shapes and colors but not details. I stayed on that floor for about a week I think. Once I had gotten to the point I didn't need a nurse to help me with anything.
I ended up having to stay in Seattle for a little longer. I had follow up appointments with the eye doc and the burn doctors before I got the ok to go home. Before I left, I ended up needing to get my right eye sewn shut again. The scratch on my eye wasn't getting better. If left alone, I'm told I most likely would've gone blind in that eye. I also lost all my nails..all of them.
Besides the physical pain I felt during that time, it was also very emotionally for me. I missed my first baby's first birthday and his big surgery. I learned a couple months after being back home that the doctors had told Reece to stay close by-that I might not make it the next couple days. BUT! Thankfully and obviously, I'm alive and better. I still have some "side effects" from it-extreme dry eyes, some of my nails haven't fully grown back and I still have patchy areas on my skin. Overall, you can't tell I got extremely sick.
What triggered SJS for me? Batrim. A common antibiotic I had been taking for almost two weeks for an infection on my inner thigh. Another thing about SJS, the it can start soon after taking a medicine you are allergic too, or two weeks after taking it. Once it starts, the big thing is to STOP taking whatever triggered it. And of course, seek treatment.
If you made it this far, thank you for taking time to read my story. For more info on SJS, you can find it here www.sjssupport.org.
September 28, 2017- I woke up thinking I was starting to get sick. Ugh. Who likes being sick? It was kind of hard to breathe, I felt sluggish and thought I was starting to get a fever. It was Thursday and also the last day of the training class I was in for work. I got up and got ready to try to survive the day. I wasn't going to let a cold stop me.
For the last day, we spent the morning just going over one of the loading systems we use and then after lunch we were going to end the class with a class evaluation. Being a seasoned AMMO troop, I stood off to the side so the younger, newer members could get more hands on training. Half-way through the morning, I started to feel a weird sensation in my left arm. It also was harder to breathe than it was when I first woke up. Noticing this, I started thinking about the Grey's Anatomy episode that mentions how heart attack symptoms in women are not always the ones you learn about. Freaked me out.
I remember standing there, watching the instructor and thinking, "what if I'm legit having a heart attack and here I am..Just standing in the bay.." I tend to overthink things, so I decided I was most likely being dramatic. Maybe due to being bored enough that I started imagining symptoms.
Now it's lunch time. I go home and decide to try and eat ramen. Wasn't in the mood. I had zero appetite. I didn't eat much of a breakfast, so I found it very strange I didn't want to eat. Decided to spend the rest of my lunch taking apart one of our legos. As I sat on the floor, disassembling a bridge, I noticed it was still hard for me to breathe. Sitting down made it even harder. I had to straighten my back to be able to get a good deep breath. Since I felt worse than I did that morning, and not being able to eat, I decided after the class evaluation I would go to the ER.
In the ER. I believe I weighed about 170 lbs about this time. I had a fever and got X-rays taken. After about 2-3 hours, the ER doc came in and told me that it looks like I had pneumonia. Well shit. I haven't had pneumonia since I was like 7. Sent me home with an antibiotic and told me to rest.
I told my mom what the doc said and tried to quarantine myself in my room. Joey was about to turn one. Which meant that his cleft palate repair surgery was coming up. So I didn't want to get him sick. Reece made me soup and I couldn't really eat it. Feeling annoyed I still wasn't hungry, I decided to just sleep. Woke up in the middle of the night feeling REALLY hot. My eyes were red and burning..but it felt like a dry heat (if that makes sense). Again, just different than they usually do when I have a fever. My lips felt swollen and SUPER hot. So I went to the bathroom and used a washcloth to put some cool water on my mouth. I noticed my chest had some red spots. I assumed those were from my fever.
Went back to sleep. Woke up a couple hours later, feeling the same. Went back to the bathroom to use the washcloth. This time I noticed my lips looked like there was pus or something in them. Wtf. My eyes were also redder. Since it was morning, I decided to go downstairs to try to make something to eat. My mom looked concerned and told me my face looked really swollen. My fever was still there and I just felt like shit. So I called Reece and asked him if he could leave work for a bit to drive me to the ER.
September 29, 2017-Back at the ER, It was a little hard to talk with my lips swollen. My fever was still high and according to the scale I lost a little weight overnight. They hooked me up to stuff and gave me a blanket. I was freezing. I felt weak and just wanted to know what the hell was wrong with me. The PA they sent in to ask about my symptoms seemed a little confused about what I might have, so she grabbed the ER doc He really looked me over as I talked about how I felt again. That's when he asked about the spots. The red spots I noticed in the middle of the night had gone from just being on my chest to now all over my chest and going down my arms and legs. I had a rug burn like scab on my back from a pumice stone being used too hard in the middle. When he looked at that and touched it, he knew what it was-Stevens Johnson Syndrome (SJS). To be sure, he called for the on call dermatologist.
If you don't know, basically, SJS is an allergic reaction to medication. Any medication can trigger it. There really isn't a cure. You just have to stop taking whatever might've triggered it and be monitored. SJS affects your mucous membranes in your body (eyes, lips, etc).
Due to the seriousness of my condition, I had to be moved to the local hospital and put into the ICU. Overnight, my skin went from just having red dots everywhere to having blisters on about 40 percent of my body. Alaska doesn't have a burn unit and when you blister that much, they can't care for you. Blisters get treated like burns. So I had to be transferred to Seattle, WA.
September 30, 2017-I stayed at Harbor View Medical Center. I had to stay in the Burn ICU. I remember arriving and being surrounded by nurses. They had to clean me up and put a type of gauze all over my blisters to help them. I cried and just tried to breathe through it. After that, I went to sleep. In the morning, the docs came in and talked to us a bit about my condition. They told me that I had SJS with TEN (toxic epidermal necrolysis). Basically, my skin was not happy. They told us what the plan was: that I needed to have a graft applied over my skin, most likely get an intubation tube put in and possibly get my eyes sewn shut. Sounds like a lot of crazy things. Let me break it down a bit on the whys..
So I needed to get the graft applied all over to help my skin heal. They gave me the option of pig skin or some other kind that I have now forgotten. I chose the pig skin simply because they told me it was so far the best treatment they've seen/used for burns. To do that they would scrub me down, essentially pop my blisters and then they stapled the pig skin to me.
Intubation tube. Like I mentioned before, SJS affects your mucous membranes. Since the day I was told I had pneumonia, it had gotten harder for me to swallow. So they said that depending how I felt by the time of the surgery, they would put an intubation tube in so there was be an open airway in case my throat kept swelling up.
Eyes sewn shut. Ophthalmologist came in to look at my eyes that Monday. They noticed I had a small scratch over my right retina. So they said they would place amniotic sacs over my eyes and sew them shut to prevent any more irritation and to let the scratch heal. Initially, they like to keep them sewn shut for two weeks.
My surgery took place two days after I arrived at the hospital. I just had the pig skin and tube down. During the surgery, they also had to shave my head to prevent any infection. I had pig skin all over my upper body. I remember it felt like was wearing a shirt. The red dots on my lower body never turned into actual blisters.
I used a pen and paper to communicate since I couldn't talk with the tube in my throat. I think later that first week, the Eye Doc decided to put in the amniotic sacs because the scratch got worse. I remember waking up after that procedure thinking I was in a whole different room and freaked out. I kept asking my nurse if I could go back to my room. I was on a good amount of drugs at this point. I started "seeing" things. I think a couple days after getting my eyes sewn shut, I was able to get the intubation tube removed. That was super scary.
I had mentioned to Reece that I was "seeing" things. The nurses started doing small tests with me to make sure I wasn't going crazy. After being there for over a week, I think almost two weeks, they started having me sit up. I never thought sitting up could be so draining. But then again, I've never just laid there for over a week. After I adjusted to sitting up, I had to start walking. First it started with walking a short distance from my bed to a chair. Then eventually having to do a lap around the unit 3 times a day.
The pig skin got removed slowly. IT would get cut off as it dried up. The nurses would come by for "wound treatment" every day. That was when they would see if they could remove pig skin and also give me a "bath". I would have to mentally prepare myself for the pig skin removal. Some moments felt amazing as they were able to itch the new skin underneath. Most moments were hardly bearable. Those moments were when they had to remove staples. Eventually they got all the pig skin off. At that point, I was stronger and able to walk to the shower room. Where I just sat on a cold ass table and got more of an actual bath.
After just over 2 weeks in the Burn ICU, I had gotten to the point I could be moved to the other floor. When they moved me, I also got my right eye back. They took out the stitches and amniotic sac due to irritation I felt. The scratch was sadly still there. My vision was super blurry. I could make out shapes and colors but not details. I stayed on that floor for about a week I think. Once I had gotten to the point I didn't need a nurse to help me with anything.
I ended up having to stay in Seattle for a little longer. I had follow up appointments with the eye doc and the burn doctors before I got the ok to go home. Before I left, I ended up needing to get my right eye sewn shut again. The scratch on my eye wasn't getting better. If left alone, I'm told I most likely would've gone blind in that eye. I also lost all my nails..all of them.
Besides the physical pain I felt during that time, it was also very emotionally for me. I missed my first baby's first birthday and his big surgery. I learned a couple months after being back home that the doctors had told Reece to stay close by-that I might not make it the next couple days. BUT! Thankfully and obviously, I'm alive and better. I still have some "side effects" from it-extreme dry eyes, some of my nails haven't fully grown back and I still have patchy areas on my skin. Overall, you can't tell I got extremely sick.
What triggered SJS for me? Batrim. A common antibiotic I had been taking for almost two weeks for an infection on my inner thigh. Another thing about SJS, the it can start soon after taking a medicine you are allergic too, or two weeks after taking it. Once it starts, the big thing is to STOP taking whatever triggered it. And of course, seek treatment.
If you made it this far, thank you for taking time to read my story. For more info on SJS, you can find it here www.sjssupport.org.
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