Originally published by Women’s Health
This week,headlinesabout a cluster of hantavirus cases linked to a cruise ship have sparked public anxiety and worries about a new pandemic. While theWHOsays the public health risk remains low, it’s understandable to be concerned about the rare disease. Hantavirus pulmonary syndrome, a rare rodent-borne illness, is estimated to have a mortality rate between 35% to 47%. There is no specific cure or treatment, and care is often focused on managing the symptoms, which can be very serious.
For Evie H., an 18-year-old from North Dakota who contracted hantavirus in 2022 when she was 14, the illness escalated from a bad headache to cardiac arrest in less than a week. This is what surviving one of the rarest—and deadliest—diseases is really like.
In this two-part series, we explore what hantavirus is like—both as a patient and as adoctortreating it.
At first, it started with a headache.
Two days before my family and I were set to go on vacation to Cincinnati, I started feeling a little off. I thought I was just tired but dismissed it, as everyone gets headaches. The morning we were set to leave, I woke up with a fever but took some ibuprofen, and we got in the car.
On Tuesday, I woke up in the hotel feeling worse than I ever had before—I was dizzy, weak, and could barely eat. By the next day, I was even worse, so we went to urgent care. They did a chest X-ray and suspected pneumonia, hoping antibiotics would take care of it. But the doctor was also concerned about my liver numbers and strongly urged us to go immediately toCincinnati Children’s Hospital, insisting something more serious was going on.
“I could start a breath, but couldn’t finish it.”
“I could start a breath, but couldn’t finish it.”
I had no idea how much worse things would get just within 24 hours.
At the ER, I assumed I’d just get IV fluids and antibiotics and be sent home. At the time, even getting an IV felt scary. But as I sat there receiving fluids, I suddenly started feeling even worse. I couldn’t breathe. I felt like I could start a breath, but couldn’t fully finish it, so I was stuck taking shallow, quick breaths. The doctors were surprised because I should’ve been improving, not getting worse, as I received fluids. I remember asking if I was going to die.
Eventually, they sent me to the ICU. I still couldn’t breathe, so they kept escalating my breathing assistance.
ECMO stands for extracorporeal membrane oxygenation and is a heart-lung bypass machine. It essentially pumps blood outside of your body in order to oxygenate it and get carbon dioxide out.
The last thing I remember is falling asleep on Wednesday night and trying to match my breathing to the rhythm of the machine I was on.
By mid-morning Thursday, I started declining quickly. My dad told me that suddenly my oxygen saturation started to decrease, and the breathing assistance wasn’t working, so they quickly intubated me, which is when doctors place a breathing tube into your airway so a ventilator can breathe for you. Then they started talking about a machine called extracorporeal membrane oxygenation, or ECMO, which is a heart-lung bypass machine. ECMO essentially pumps a person’s blood outside their body to oxygenate it, remove carbon dioxide, and then return it to their body.
ECMO requires major surgery to set up, as you need to get tubes into your veins and arteries to access your blood.
While I was in surgery, the chaplain came and told my parents that something had happened, and they were performing CPR on me. My heart had stopped. They performed CPR on me for nine minutes before my heart restarted, and finally, they were able to put me on the ECMO machine.
My mom said that while I was in a coma and on ECMO, I looked basically dead. I was so swollen. I didn’t know this at the time, but the reason I felt like I couldn’t breathe when they were giving me fluids before was that I was already so sick with respiratory failure from the hantavirus pulmonary syndrome that it was filling up my lungs.
In normal kidney function, your kidneys are responsible for taking the fluid out of your body, but when they aren’t working, it just goes to your lungs instead of being balanced out by your kidneys. I was essentially drowning, but no one knew it at the time.
“It had been less than a week since my headache.”
“It had been less than a week since my headache.”
The next day, doctors told my parents that they had removed my pain medication, and I wasn’t responding or showing any stress. If I didn’t show brain activity soon, my parents were told to prepare for the worst. They went to bed that night thinking they’d have to make some hard decisions on Saturday.
It had been less than a week since my headache.
Then, on Saturday at noon, my grandma was in my room when she told my dad that my eyes started fluttering. I also started to squeeze my mom’s hand. As soon as the doctors heard that I was responding, they put me back on the pain medication so my body wouldn’t be under more stress when I woke up.
After I showed signs of brain activity, they sedated me again and I stayed on ECMO until Tuesday. By the time I came off ECMO, everything had stabilized, and I had started improving.
The doctors later told my parents that they didn’t expect me to make it based on how quickly I had declined, and that given that I was without oxygen before I got on ECMO, I should have brain damage, but I don’t.
My family believes faith, medicine, and timing all played a role in my survival. Not every hospital has ECMO machines, and even if they do, they don’t always put children on them because it’s so complex. If I had been home in North Dakota when I got sick, the nearest hospital capable of putting a child on ECMO would’ve been more than three hours away.
The Long Road Back to Recovery
Recovery in the hospital was rough. Even walking was hard. I could only take a few steps down the hallway before I had to sit in my wheelchair again because my legs and muscles were so weak. That was really frustrating and kind of scary. I was so weak I couldn’t even write. That really threw me off.
“Even the physical act of eating was hard.”
“Even the physical act of eating was hard.”
My stomach had shrunk because I had been in a coma for so long, so I had to force myself to eat so I could start feeling stronger and gaining more weight. I had lost so much weight in the hospital that at one point, my dad said I was down to 86 pounds.
But even the physical act of eating was hard. I was intubated for so long that it actually caused throat soreness that made eating and swallowing uncomfortable.
I was pretty much back to normal by November—a full four months later. Recovery felt frustrating, but in the grand scheme of things, it was actually really quick.
Finally Getting Answers About Hantavirus
I had never heard of hantavirus before getting sick. An infectious disease doctor mentioned it as a possibility early on, within the first day or two, but because the disease is so rare, confirmation testing took a while and involved the CDC.
But even if doctors had known immediately, it wouldn’t have changed my treatment. There’s no specific antiviral medication for hantavirus, so doctors focused on supporting my organs and helping me survive the respiratory failure.
I still don’t know for sure how I got it. We live on a farm, hantavirus is carried by rodents, and there are mice around—but I didn’t see any or come into contact with any. Still, it’s not a shock that I might’ve been exposed to something.
One possibility is that a few weeks before I got sick, I was cleaning cabins with a group of kids at camp and might’ve been exposed there, but the health department followed up, investigated, and said the camp was clean. I’m not a super outdoorsy girl either. There was nothing obvious.
“The doctors told my parents there was a possibility we might not ever know what got me so sick.”
“The doctors told my parents there was a possibility we might not ever know what got me so sick.”
Hantavirus is so rare, and it’s not something you can avoid clearly. You probably won’t come into contact with it. It’s so unique that it seems like there’s nothing I could’ve done to prevent it. Of course, I’m not going to go pick up a mouse or anything, but nothing has really changed. I’d say I’m more aware if I ever see rodent droppings, but I’m not concerned.
When I was in the coma, the doctors told my parents there was a possibility they might not ever know what got me so sick. My parents were concerned and worried we would get home and it would happen again, that it might be a genetic condition, or that it might be contagious.
When they confirmed it was hantavirus, we were relieved in a way. Knowing that I’m more indoorsy and that this was likely very random and that it likely wouldn’t happen again was comforting.
How the Experience Changed Me
I can have a pessimistic attitude sometimes, but this experience has been something I can always come back to in my mind. I have so much to be grateful for and that I shouldn’t take for granted—even things like walking across the house or being able to do physically and mentally challenging things.
I had wanted to be a nurse before all this happened, and this experience really reaffirmed that for me. I had one nurse who was my favorite and was so gentle and kind and made me feel so comforted during my stay in the hospital. I want to be able to do that for other people. I’m starting college in the fall to study nursing.
Eight months after my hantavirus experience, I started running track and field for the first time. I’d done cross-country before, but this was my first season running track.
Sometimes when I’m exercising or doing something where I’m aware my body is under a lot of stress, I think about how lucky I am that my heart is beating. I think about that pretty often—that I’m still here, I can breathe, and I can do things I probably shouldn’t be able to after getting hantavirus. I feel lucky to be alive right now.
Carina Hsieh, MPH, is the deputy features editor ofWomen’s Health. She has more than a decade’s worth of experience working in media and has covered everything from beauty, fashion, travel, lifestyle, pets, to health.
She began her career as an intern in the fashion closet atCosmopolitanwhere she worked her way up to Senior Sex & Relationships Editor. While covering women’s health there, she discovered her passion for health service journalism and took a break to get her Masters in Public Health. Post-grad school, she worked as a freelance writer and as The Daily Beast’s first Beauty, Health, and Wellness Reporter.
Carina is an alum of the Fashion Institute of Technology and the Yale School of Public Health. She and her French Bulldog, Bao Bao, split their time between Brooklyn and Connecticut. She enjoys reformer Pilates, (slow) running, and smelling the fancy toiletries in boutique fitness class locker rooms.
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