This is a story of an ordinary series of events that led to a medical crisis that could have killed me, and a story of some of the many people who contributed to my survival. It’s also a cautionary tale about the dangers — beyond Lyme disease — of tick bites.
Rocky Mountain spotted fever, despite its name, is prevalent in the Mid-Atlantic area and, unlike Lyme disease, it can kill you if treatment is not started within five days of the onset of its symptoms: fever, headache, abdominal pain, vomiting and muscle pain. In fact, it is the most common fatal tick-borne disease in the United States.
According to the Centers for Disease Control and Prevention, some 2,000 Americans in 2010 came down with the fever, which is primarily transmitted by American dog ticks. Most of the victims lived in an area stretching from Oklahoma to North Carolina and my home state of Virginia.
But I didn’t know that when I was bitten by an infected tick late last April. Here’s how my case unfolded:
Saturday, April 18: I walk for 3
I have walked through the battlefield many times over the winter with my dog, but I don’t usually go out in the high grass or woods after the end of winter because I worry about ticks. After the hike, we check each other, find a few and brush them off.
Sunday, April 19: My 15-year-old daughter Emma inspects me more thoroughly, and finds a tick attached to the skin in the middle of my back. She pulls it off. I figure I’m okay because it isn’t engorged with blood and hasn’t been in place for the 36 hours required for Lyme disease to have a chance to take hold.
Thursday, April 30: I swim a mile at midday and do 10 minutes of leg lifts in the water.
At dinnertime, I feel body aches. I attribute it to the extra 10 minutes in the pool — and my head starts to hurt, acutely painful behind my eyes.
Friday, May 1: I wake up with all-over body aches and a temperature of 102 degrees. I stay in bed all day. My sister-in-law Liv picks up Emma and our dog Daisy, takes them to her Bethesda home to stay until what we think is the flu passes in a day or two. I start taking ibuprofen every six hours. End of Day 1 of my symptoms.
Sunday, May 3: I’m still as sick as I was on Friday. In the late afternoon I take myself to Kaiser Permanente’s Tysons Corner Medical Center Urgent Care, where I spend the next five hours. They do an X-ray and take blood. They think I might have hepatitis because my liver enzymes are elevated. They think I might have gallstones because of the pain I’m feeling, and they schedule me to see my primary care doctor first thing on Monday, with a follow up CT scan that day, too. End of Day 3.
Monday, May 4: My primary-care doctor thinks I should be admitted to Virginia Hospital Center for monitoring and observation because the blood work and X-ray and CT scan haven’t been able to determine what’s wrong with me. My aches and fever continue. VHC says they have no beds available. Liv calls around in Maryland and is told that Sibley and Suburban hospitals both take Kaiser-insured patients. She drives me to Sibley that evening, where they admit me to the emergency room. But it turns out they don’t take Kaiser insurance for inpatient hospital care. They take blood and keep their eye on me while they try to find a hospital that can admit me and will accept my insurance.
By 2 a.m. they have found a bed at Holy Cross Hospital in Silver Spring that will be available first thing in the morning on the floor reserved for Kaiser patients.I will wait in the Sibley ER until then. End of Day 4.
Tuesday, May 5: At Holy Cross they take blood and start monitoring me by taking my vital signs: heart rate, blood-oxygen level, blood pressure. I text my sister, who lives in Indiana: “My liver enzymes are continuing to elevate. My white blood cell count is 2.5 so they have me in isolation room under neutropenic precaution (meaning they’re worried that I can catch any bug that’s floating around). My [pulse oximetry reading] was 88 — meaning the oxygen level in my blood is too low — so they have me on oxygen. I’m a mess. Still don’t know cause. How are you?”
By that evening, my breath is getting shallow. The nurses check my lung sounds and then, suddenly, the room is full of doctors and nurses: It’s the critical care team, called in when a patient appears to be going into organ failure and system shutdown. Liv is standing across the room watching. She looks worried, and I wonder why. I’m surrounded by medical professionals, and so I figure: What could possibly go wrong?
They see that my lungs are full of fluid. They start me on Lasix to drain the fluid, lung treatments, steroids and an IV antibiotic, which is the standard treatment for Rocky Mountain spotted fever. This is prescribed by the team’s infectious-disease doctor, the first to suspect RMSF because of the tick bite, which I had mentioned to every other doctor along the way, combined with the sudden appearance of a rash on my arms and chest. One of the doctors, a critical care specialist, thinks that’s not correct, that I have interstitial lung disease, because of my history of smoking, even though I’d quit 3
Wednesday, May 6: I am responding to the antibiotics. My liver enzymes are back to normal, my temperature is down and the pain is subsiding, all of which seems to confirm to my doctors that I have RMSF. The tricky part about this disease is that it can be confirmed only by a blood test 10 days to two months after infection symptoms appear— too late for a doctor to decide whether to treat for it.
But I am still very sick.
I send a text to my older daughter, who lives in Denver and who didn’t know anything was going on: “Hi Molly. I’ve been in Holy Cross hospital since Monday. Haven’t told you because didn’t want to worry you. i also didn’t want you to even think about coming out here. Jennifer is here. Don’t worry. Love you. Mom.”
She immediately calls me, in tears that she hadn’t known, and worried and scared. I’m too foggy to understand why she’s mad at me, but I know enough to send her a quick text apologizing for hurting her. She and her husband have a 7-month old baby boy. She has a full-time job and is taking a graduate course. I think to myself that she will have her times in hospitals with her son, as I have had my times in hospitals with her. Someday when I’m old, she’ll probably need to be at my hospital bedside. But now is not that time. End of Day 6.
Thursday, May 7: Sometime in the afternoon, I feel good enough to walk over to the bathroom on my own, pulling my IV pole along with me. I get back to my bed, and a nurse comes rushing in. The heart monitor shows that my heart rate has spiked at 175. They do an echocardiogram and discover that I have developed atrial fibrillation, so they restrict my walking around while they monitor my heart more closely. They add a second IV line to my hand for a drip of cardizam, a heart medication, which causes my blood pressure to drop.
Friday, May 8: A cardiologist comes to see me, and says that my A-fib is a result of the physical exhaustion and trauma due to the illness. My heart is structurally fine and the A-fib will most likely resolve on its own once I can get rest and start to recover. He says he has never treated anyone with RMSF, but he expects me to recover fully.
Saturday, May 9: I’m getting sick of being sick, and I start asking when I can go home.
My doctors tell me that will happen when I am able to walk around without my heart rate spiking.
Sunday, May 10: Heart spikes continue whenever I walk. Although my blood pressure is back into the normal range, my doctor says they need to continue monitoring my heart, so I can’t go home yet.
Monday, May 11: All my vital signs are returning to normal. Finally! This is 11 days after my symptoms first appeared. I am still getting IV fluids and antibiotics. I am told I will go home that day. In the afternoon, my primary hospital doctor tells me that my heart has converted back to a normal rhythm, meaning my A-fib has resolved itself. I am elated that I won’t have to take a blood thinner or get my heart shocked with electricity to get it back into a normal rhythm. All I need to do now is rest and recuperate at home for a week or so. “In a couple of weeks, you will forget that you ever felt bad,” she says.
Wednesday, May 13: Today I hear birds singing outside when I wake up in my own bedroom, and in the evening Emma and I take Daisy for a walk to the park — not into the woods. I am tired, but mostly grateful for my sisters and the medical folks who helped me survive my illness and for this very ordinary day.
Ashley is a narrative psychotherapist in Arlington.