Why Can't You Just Be Normal

{read part one here}

Typically not something you want to hear from your infectious disease doctor right? I promise you I was trying to get back to normalcy, but basically my body refused to cooperate and essentially that’s how I ended up back in the hospital. Sparknotes version.

After I was discharged from the hospital I was set up with an at-home healthcare company that made home visits and taught us how to dispense my IV antibiotics. I started off with a 250mL bag that you hooked onto a tall tripod-like pole and by gravity the antibiotics were administered into my system. And that’s how I got to sit on my couch every day twice a day for three hours while that poison entered my veins. I had had a slight reaction to the antibiotics (Vancomyacin to be exact) while I was in the hospital. It’s a strong medicine, and in some people when it’s administered too quickly or too concentrated into the body it can cause you to break out into a rash. It’s a pretty common phenomenon known as “red man syndrome” and it’s actually not harmful, just uncomfortable. Luckily (but also unluckily), the gravity drip was so stinkin’ slow that I had no reaction to the drug.

Every Monday my home nurse would come and take my blood to send off for testing. They ran the drug levels to make sure my body was getting the right amount of drug to try and get rid of the infection in a four week time window. Each week they ended up increasing it because my blood levels were too low. Eventually they had to increase the dose so much that they traded my 250mL bag for a 500mL bag. And this is where is get’s ridiculous. Now, instead of three hours per dose, it was up to FIVE. Justin was having to wake up at 2am to hook me up to my bag so I could make it into work at 8am. Then Speni would hook me up at 2pm so hopefully it’d be done by the time I tried to make dinner. It was NOT working for me. So I called the pharmacist assigned to my case and pleaded for another alternative to the 500mL bag. I couldn’t be spending 10 hours of my day immobilized on my damn couch. So they ended up switching me to these pressurized baby bottle-looking things that dispensed the antibiotics by pressure. Why they didn’t just start me off on these things, I will never know. And my life vastly improved thanks to the baby bottles. The time was down to two and half hours AND since I was no longer stuck to a giant pole, I could get up and clean or make dinner and even run errands without interrupting the process.

Unfortunately (and that’s literally the biggest understatement of a word I could use here) now the drugs were being administered too quickly and too concentrated. And my body FREAKED OUT. It started with getting itchy and my body turning bright pink during my evening dose. I had to jump in the shower immediately following my dosage to stop myself from tearing my skin off. This went on for about a week. Meanwhile Justin was in constant contact with the nurse and pharmacist and they said this was normal and I would just have to “ride it out”. Then I started running fevers. HIGH fevers. I was taking as much ibuprofen and Benadryl as I could and trying to get a handle on things. Until it all took a turn for the worst.

Over the weekend of April 13th I got violently ill. I started having chest pains and running a wild fever. We went to the ER and they took a couple X-rays, kept me for a few hours of observation and pumped me with fluids and then sent me home with some pain medication. Justin contacted the infectious disease department and updated the on-call doctor with everything going on with me. They advised me to stop taking my antibiotics and to stay on a tylenol regimen and watch my fever. Which was so incredibly unhelpful. I have never felt so awful in my entire life. My head was killing me, I was freezing and sweating, I couldn’t tell if I was awake or sleeping, I couldn’t eat, I couldn’t think. All I could do was breathe and try to drink water. I stayed in my bed all day Saturday and Sunday. On Monday, Justin made an appointment at the hospital to figure out what was going on. My temperature was a solid 104 degrees, I started swelling all over, I began throwing up and it was really hard for me to move. My regular infectious disease doctor was not in the office so we went to one of his colleagues. He said I was going to be okay. He said to take as little medicine and drink as much water as possible, and my body should flush out the antibiotics.

I did NOT feel like I was going to be okay. That evening my home nurse came back to collect some more blood and take my vitals. It took every ounce of strength I had to move from my bed to our kitchen table. My fever reached 106 degrees and my vitals were unstable. My blood pressure was alarmingly low and my heart rate was off the charts. He said we needed to go to the emergency room as quickly as possible to prevent me from becoming septic. He actually used the word SEPTIC. I could barely comprehend what was going on because I was so, so out of it. I put on some slippers and wrapped myself in a blanket and my nurse and Justin helped me down the stairs and into the car. Once in the emergency room, I was checked in and had about four different nurses on me. I was hooked up to fluids, and poked about fourteen different times while the poor phlebotomists tried to find a vein through my puffy swollen skin. They gave me some pain medication to try and help but I was just past the point of caring. I couldn’t focus on anything. I just laid there while they asked Justin questions and I prayed for sleep. Once again I was admitted to the hospital and given a private room in the PCU.

In the PCU I met my night nurse (who I could easily write an entirely separate blog post about because she is one of the most amazing women I have ever met) and Justin answered another set of questions and then we both went to sleep. This stay in the hospital was significantly different from my first. There weren’t any tests. There weren’t regular doses of pain meds. There wasn’t watching movies with my sister or my husband bringing me tasty meals. There was only waiting.

I was diagnosed with Stevens-Johnson syndrome, which is a type of allergic reaction that attacks the skin. To sum it up, it basically feels like the worst sunburn you can imagine. My arms, legs, and stomach were swollen and blistered. My face became so swollen it was completely distorted and for a couple days, I couldn’t even open one eye. All I could do was drink my water and wait for this to pass. I was kept on tylenol and Benadryl, and they also started giving me potassium supplements and a magnesium drip. I was hooked up to a heart monitor and a blood pressure cuff and they kept a careful watch on my vitals. I was given a heparin shot in my stomach every six hours to prevent any blood clots from forming in my legs since I wasn’t moving. The only times I got out of bed were to use the restroom and take showers.

My sister said for the first three days all I did was sleep. Then all I wanted to do was take showers. According to Justin and Speni, this was a disaster. For each shower, they had to remove my heart monitor and since my skin was so fragile it ended up ripping off huge chunks of flesh. Once I was in the shower, I would sit there until my legs turned purple, get out of the shower, look at myself in the mirror and have a complete breakdown. The only shower I remember taking is my first one: when I got out my legs were deep purple and HUGE and I began sobbing thinking they were going to have to amputate them. I have NO idea why this was my train of thought, but my nurse (the amazing angel she is) sat with me on my bed and held me while I cried and told me what was happening with my legs was completely normal. Of course this all went down the first night Justin left and he got to walk into my room to see the meltdown. I’ve asked them why they let me take showers at all since I was such a hot mess but I guess I got really mad if they told me I couldn’t. Slowly, I was able to stay awake for longer periods of time. I talked to a handful of different doctors, explaining what was happening to me, trying to decide on a course of treatment, and basically just bugging the hell out of me. I was given pain medicine to cope with my discomfort and steroids to try and accelerate the healing.

Once my vitals became stable and the heart monitor was no longer needed I was transferred to the West Wing. Which I have likened to the Island of Misfit Toys. The West Wing is a WHOLE different experience from the PCU. I had a different nurse pretty much every time I saw one. They kind of just leave you alone except when they’re required to take vitals or give me a heparin shot. It was weird. We kind of all hated the West Wing. I stayed there for about two and a half days. My skin was peeling (just like after a sunburn) and I was on the mend. Since I was hopped up on a bunch of different medicine and my vitals were all over the place, the entire stay is very fuzzy for me. I remember bits and pieces but I have a hard time differentiating reality from the vivid dream I was experiencing. Eventually I got the “all clear” or in my case “this is as good as it’s going to get for a while” and was sent home.

Top photo: my blisters in the hospital. Middle photo: my blisters while healing. Bottom photo: my forearm now!

My blistered and swollen abdomen in the hospital. You can see a couple spots where the heart monitor took of layers of skin.

My legs were also swollen and blistered.

A shot of my poor face. Believe it or not this was after the worst of the swelling had passed.

This time, being sent home was met with much different feelings. There was some relief, but it was mostly uncertainty and I was scared. Scared that I would never be normal again. My entire body felt foreign and I felt disgusting. I couldn’t wear anything but giant t-shirts and socks for a week. Every time I sat down my skin would flake off onto the couch, in our bed, on the floor, everywhere. I couldn’t do anything without become exhausted and needing a nap. Justin even had to buy me a step ladder so I could get into the bed. All I wanted to do was lay in the shower and cry.

I can honestly say this was the first time in my life I’d ever felt depressed. I had no motivation to do anything because what was the point? I COULDN’T do anything. I couldn’t even brush my hair or put on lotion without taking breaks. I spent a lot of time sitting on the bathroom floor and laying in bed feeling sorry for myself. Which made me even more upset because I’ve never been that type of person. Justin and Speni were doing everything they could to lift my spirits. Which made me feel worse because here were the two most important people in the world to me, and I couldn’t even be the person they knew and loved. But they never quit encouraging me and after a while I started feeling like myself.

For the most part my life has returned to normal. It took a lot of little steps to get here, but with the tremendous love and support from my family and friends, I am almost 100% back. There are small adjustments I’ve had to get used to, for example my skin is extremely sensitive now and I have to apply sunscreen whenever outside or if my skin comes into contact with too hot of items (like a coffee mug) my skin will blister. But I’m on the other side. I really don’t know if I could’ve gotten through this whole thing without my amazing support system. It still moves me to think back on how scary it was for me, and how incredible my husband, my sister, my family and my close friends were. I’ve never felt so lucky.