Coma Chronicles: Coming Out the Other Side
WHY YOU SHOULD CARE
A common cold ends up being not so common, and you’re plunged into the twilight of something that steals your mind.
By Emma T. Capps
In the fall of 2015, I moved across the country to go to university in New York City. I loved my new roommates, my new city, my new life. I’d been happy before, but there was always something off. As I started orientation, for the first time, everything seemed to fall into place.
Less than a week in, I caught a cold from my roommate.
It rapidly got worse. Suddenly, all I could do was sleep. It took all my energy just to get up and eat something from the dorm fridge. I remember sitting on the floor late one night, shivering in my sweat-soaked pajamas eating Yoplait and wondering what I did wrong. Have I been washing my hands enough? Oh, my God. How many days have I worn these clothes?
Eventually, I went to a 24/7 drop-in clinic where the doctors proceeded to throw some antibiotics at me and kick me out. My parents were having none of it. They had me spend the night with a family friend, who took one look at me and booked me an emergency appointment with her son’s pediatrician.
The blatantly un-chic reality was this: I was 18 years old, high as a kite on painkillers, and wearing an adult diaper.
I woke up in the ICU three weeks later, strapped to a bed.
Do I have memories? Well, yes and no. One thing the doctors will never, ever say is the word “coma,” and they will only utter it much after the event. Instead, they just said things like, “We’re giving her some things to help her sleep” or “things to help her calm down.” I have some very fuzzy, blurry memories, but it’s in no way a linear time frame.
There is no end date for a coma, not necessarily. I had days when I was more cognizant, when I was awake more, but I don’t remember those. My more continual memory starts to take shape later on, as I’m having to do things like trying to eat again and walking down the hall.
But waking up from a coma, first off, it’s decidedly nothing like it is in the movies. There’s no scene à la Sleeping Beauty where the protagonist takes a breath, flutters her eyelashes, and miraculously awakens. The blatantly un-chic reality was this: I was 18 years old, high as a kite on painkillers, and wearing an adult diaper.
At the time, I had a diagnosis of total pulmonary failure, for which the doctors had no explanation. While I was unconscious, they’d given me a tracheostomy. I’d also been tube-fed, so I’d lost so much weight and muscle tone that I couldn’t walk at all, hence the Diaper Situation.
I wasn’t very upset about this at first, because for some reason, I assumed once I got better I’d just waltz right back into school. What actually happened is the school shipped me back home to California. I still never really had a cut-and-dried diagnosis, but I was on strong daily medications, and they seemed to be working. I had a pulmonologist and I did physical therapy, determined to return to school. So in the fall of 2016, a year after my coma, I went back to university in New York.
This time, I lasted longer. A month or so.
But things started to fracture. I got three colds; I wasn’t thinking clearly; I couldn’t do school assignments that, rationally, I knew were easy. Eventually I decided I needed to come home. I started getting severe migraines, and eventually, my parents took me to the emergency room. There, the doctors performed a spinal tap, which to me was absolutely hilarious. I kept saying, “Oh, like the movie Spinal Tap! Hahaha! It’s actually real!”
This was not funny to my parents.
The emergency room wasn’t equipped for what the doctors saw, and they put me in an ambulance to UCSF Medical Center. There, the MRI revealed something horrifying: lesions in my brain, over 30 of them. The doctors were shocked I was even walking. As the medical team treated me, one doctor surmised: “You know, this isn’t adding up.” And beyond: What if the lung failure and brain damage weren’t two disparate incidents, but rather, stemmed from the same disease?
On a hunch, she sent for gene sequencing and discovered I have an extraordinarily rare genetic disorder: hemophagocytic lymphohistiocytosis (HLH), which more often than not goes undiagnosed because it’s so uncommon and has a high mortality rate, which is to say it’s fatal. And there is only one cure: chemotherapy and a bone marrow transplant.
In early 2017, I began searching for a donor through Be the Match, the worldwide registry that connects potential marrow donors with needy patients. For months, I was in limbo as I waited to find someone. Finally, my doctors called and told me I had a perfect match. Donating through Be the Match is anonymous — both parties must consent to be contacted a year or two post-transplant — so I don’t know who my donor is.
In May 2017, I went in for high-dose chemotherapy and my transplant.
Until after my bone marrow transplant, I never had a special diet. After that, however, the immune system is nonexistent, so transplant patients cannot consume anything that might include trace pathogens. That meant I was not allowed to eat raw fruits or vegetables, eggs, milk, cheese, fish, and any meat cooked less than well-done. I was also not allowed to eat anything that hadn’t been prepared in the home. This persisted from May 2017 until November 2017, when I was finally let out of my home isolation.
As for exercise immediately after the coma, I refused my doctors’ original idea to put me into an assisted facility for several months to do daily physical therapy. Instead I did it mostly on my own, but I also have played squash for many years, so I got back to that when I could. My doctors told me how much weight I needed to gain back, which meant I had to consume a disgusting amount of Ensure.
I feel a lot better now, but it’s not an immediate change. Because my brain had been affected, I still had to do work to improve mentally after my experience. Physical changes occurred as well: Steroids make everyone swell, and I was no exception. My facial structure took a long time to return to normal, and of course I had to grow back all of my hair. Fun fact: It often grows in a different color, and mine is now lighter than it was before.
I realize I feel much better than I did even before my coma. Some things are exactly the same, but I realize my energy is a lot higher. Of course, I have many more things I have to worry about now, and those are worries I don’t think will ever completely go away.
But somewhere in the world, there’s a stranger whose cells live in my body, and whose kindness I will never forget. Today, I’m healthy and going back to university in the fall. My donor saved my life, and if I get to contact him, I’ll tell him I didn’t waste it.
- Emma T. Capps, OZY Author Contact Emma T. Capps