I checked my temperature. 100.2* F. I knew without checking. I know fevers. They come through this body. I was achey in my joints and my lower back. I felt hollow and wrung out. I felt heavy and restless. My cough felt like sandpaper, it burned my chest. I know a fever.
But fevers have changed. With the symptoms of Covid-19 across the info-sphere, it is impossible to ignore that fevers mean something else. And here is the tricky part for CF patients — the symptoms of CF are the symptoms of Covid. As my nurse said, there are very few of us that would pass the symptoms screening.
I have the privilege of living 45 minutes from one of the best Cystic Fibrosis clinics in the country. While we watch our native Denver fill with people, we look to other places to live where homes are not stacking up across the prairie. Among other things, the clinic keeps us here. There are worse places to be.
So, I got a fever. It was Sunday afternoon (they never happen during office hours). Normally I would wait a few days. But uncertainty and fear took over. I took a deep raspy breath. I didn’t want to scare my family. I laid down in my bed to cook for a while. And think. And really feel. Scanning head to toe. Should I call my doctor now? Am I over-reacting? Is it more important not to bother a doctor on a Sunday or to figure out if I’m finally going to die?
Fear and uncertainty don’t get the driver’s wheel often. They are always on board. Liz Gilbert in her book Big Magic (2015) leads us through this amazing exercise. Imagine a road trip where all of the parts of us are invited. In a letter to these parts, we set the rules for a successful adventure. I tried this:
You have been my greatest teacher, sometimes using corporal punishment and sometimes with gentle guidance. You are conjoined (Gilbert’s words) with fear. You allow me to see ways of dying that are novel and terrifying and sometimes peaceful. You allow me to feel what’s it’s like to drown and physical pain and crippling depression. And, you grant me an appreciation for life and the understanding that with or without a terminal/chronic illness, we best use our time here for something greater than ourselves. Lately, that feels like sharing your story and mine with you. I am scared. It feels daunting and lonely and like it may also offer healing for my soul.
Like Gilbert’s road trip rules, I have some of my own - you may not tell the story, but you may join me and so can fear. And depression. But, you will sit in the back and I’ll only pull over in emergencies. Creativity and courage get shotgun and I get to drive. They will choose the music and, while I will take suggestions, I will also choose the route.
I read this and re-read this part in my journal as I laid in bed perseverating. Who was driving? It was just a fever. A low-grade fever. I always have a cough. I know it hurts, it always hurts.
The immensity of our situation baked in with the growing temperature in my body. I started to make plans. I took back the wheel but fear definitely moved from to backseat and was riding shotgun. I told my family I had a fever, it was no big deal, and I was going to bed. (Insert pause for this bomb drop on my quarantined family. Not nice, I now realize. More on families and caregivers later.) It was 7 pm. I turned off my phone and all of the other things that pandemic news was seeping through. I stopped the flow of outside information. I slept some. I woke up at 5 am and wrote a list of things to do if this all went badly. I am a list-maker. It gives me a false sense of control.
8 am sharp. I called the clinic. The CF nurse asked how I was. I said, “I have a fever and a cough.” Her tone changed. “Let me connect with the docs and call you right back.” Minutes later I got a text from the nurse that I’ve been with for 20 years. The woman who helped me avoid IV bruises on my arms when I was in the hospital the week before my wedding. She texted, “Hi sis. Call you in a sec. You want to come to get tested for Covid?” She said it, the C word, not me. Finally, someone said it.
While many are suffering from symptoms of Covid without access to tests, I got in right away. There are very few perks to Cystic Fibrosis. I don’t want to say this is one, but shitty lungs give me access to testing. Immediately. At 8 am I called my doctor, and 1030 am I was in the car — my husband driving and daughter in the back (inside me, fear and anxiety and an odd sense of calm were driving. I was firmly in that backseat. Not good. I clamored over the seats and took back the wheel kicking fear to the side). I turned to my family in the car and said, “Ok, let’s plan for the worst and expect the best.” “Ok,” they said, “what does that look like?”
I call it crashing. I have crashed. Not a car crash, but a body crash. I never had the idea that I could plan for the crash. I tried not to read stories of Covid, but also feel strongly that these patients deserve to have their stories read. They are people with stories. And feelings. When I cracked that screen open, the accounts of patients with low-grade symptoms that are on the ventilator and then dead in record time. I was trying to plan for that knowing that my lungs would not handle more inflammation and infection.
We arrived at the hospital. This is one of the premier respiratory hospitals in the country. Every time I arrive, I say a silent thank you for access to this care. The privilege of the insured.
When we pulled into the circle drive, I unrolled the window an inch and made eye contact with the valet. She was not gowned up but wore a mask. “I’m here for Covid testing.” The three nurses made eye contact that made me feel both uneasy and calm. A short woman with black curly hair approached. She was gowned up the way nurses and doctors gown up for us in the hospital. Yellow mask, long yellow paper gown with sleeves capped by purple gloves. She asked for my symptoms. I told her fever. Cough. Remember, we’re in my car. Outside of the hospital. She passed a piece of paper through the slit of my window. I grabbed it with my sleeves tucked over my hands. It said nothing but a large-font-size phone number. She told me to call that number and to check-in. She passed me another piece of paper. (Shit! I think, stop breaking my imaginary bubble of safety with these papers.) I grabbed it with my sleeved hand and placed it on the floor between my feet. It was information about the screening — bullet points of information I could not see because I didn’t have my glasses and because. Just because. Finally (it’s only been 3 minutes) she tucked a yellow piece of paper under our windshield wiper. She pointed across the street to the parking lot to a large white tent. This was all done in the driveway in front of the hospital. We drove where we were directed.
I called the number. Feeling more like a spy than a patient. The registration nurse answered. Name and birthdate? I tell her. What are your symptoms? Fever, cough. “You’re all set,” she said, “drive into the lot and into the tent. Do NOT get out of your car. Keep your windows up.”
Welp, fear was back in the driver’s seat.
We pulled up to the gated parking lot. The attendant looked at the yellow paper on our windshield, nodded slightly and lifted the arm of the gate. I noticed everything. In new environments, our sensory channels open in curiosity. This is a new universe. He was not wearing any protective gear but a paper mask. I was wearing a paper mask. My family was not masked. The white tent looked glossy and fresh. It sat alone in a large parking lot taking up only five or six parking spaces. It was small and looming. We drove around the empty lot to circle back to the tent’s entrance. As we pulled in, my phone rang. It was the nurse. The nurse standing in the tent. I couldn’t see him. He was behind me, next to my daughter’s door on the left.
“Hi, Kelly.” He said and then told me again not to open our windows. He explained the test. It’s a swab. It goes up my nose. Got it. This is a flu test/not a flu test. I had the flu four times in the last 18 months. I am intimately familiar with this swabbing thing. Essentially, it is a long q-tip that is placed gently/not gently into the upper reaches of your sinuses that you didn’t know were accessible with a small stick. A skilled nurse nudges the eye socket with the swab and stops pushing, then moves the cotton tip around. Back and forth about 1 cm. An unskilled nurse hits the eye socket and keeps going. Either way, the swab is invasive and your body immediately rejects the sensation. Nope! And, then the rational creeps in and you do it, and as soon as that thing is out of your face, you rub your nose vigorously as though you can erase the sensation from memory. And you sneeze. And your eyes water.
But this swab was not a flu swab. The woman with the cotton-tipped device approached my window. She was wearing the yellow gown, she was gloved, she had an N96 mask that looked like paper mache and her head was covered in a shield. A hard plastic armor wrapped around her forehead with a black strap. It surrounded her entire face and wrapped around her chin and ears. It brought me great comfort. I love protective layers. Not just in a pandemic, but always. She is our new respiratory therapist in the CF clinic. She introduced herself. I only know much of my medical care team by their eyes. I memorized hers. I unrolled my window as far as I need to. She swabbed my nose. She was skilled. I rolled up my window. We all sat for a moment. What the hell just happened? We drove away. No resolve. Just some waiting.
And, what about that team of nurses. Standing in a tent wrapped in layers and layers and hard plastics and latex. Calling people behind the glass and metal of their cars. What about the people who don’t have cars? Where is that protective shield? I am still thinking of my nurses. If you haven’t thought of our medical professionals, I urge you to read their stories.
We drove home on busier streets than I expected during our state’s stay-at-home orders. We did not talk much. We listened to some music. We got home and without a plan, without my request for some time together, we all sat down to work on a puzzle. I knew we’d be fine. I had a gut feeling it was not Covid. I felt pressure releasing from the crown of my head replaced by relief. Just to get the test. The piece of paper slid to me through the crack of my window said that they screened for any other viruses first. That test would take 24 hours. If that came back negative, then they screened for Covid. That could take 3-4 days. We were in for the long haul. We mentally braced. We tucked in. We sat together. We put together a puzzle.
It did not take 24 hours for the first test. I received a call during the great puzzle assembly that afternoon that the first round of screening came back negative. Ok. Good to know so quickly. Not such good news. Four days until Covid results. Brace. Tuck. Sit.
It did not take four days for the second test. Another privilege of CF — quick results. Late in the day after the epic drive-through swab, I got another call. “Kelly,” she said, “the Covid test came back negative.” I had no sensation. No relief. No joy. No fear. Just nothing. “That’s great,” I said. The call was no more than 20 seconds. It was the next day. We were in different clothes. We had switched to Disney Monopoly. I shared the news with my tucked in accomplices to little fanfare. Ok. But, if not Covid, then what? That’s why I didn’t feel relief. I still had a fever and a burning cough.
I had another type of infection. The next day, after fifteen days in total isolation, I had to go inside of the hospital to see my medical team. I approached the layer past the valet. I was asked about my symptoms. Name, birthdate. Fever, cough. The woman in the N95 mask, gown, gloves looked back at the nurse sitting behind her — still in the entryway. Between the first and second sets of sliding glass doors. He takes my temp. It’s low. He laughs. “All CF patients have Covid symptoms.” I was let in. It was hollow inside. The usually bustling hallways were empty. I stood. I did not sit. I distanced myself from all surfaces. I was called back. My hands were tucked deep into my sleeves. I had two paper masks on. My respiratory therapist was covered. She walked me up to a chamber to do my Pulmonary Function Tests (PFTs). She offered to touch everything with her purple gloved hands so I didn’t have to touch anything. Okay. I got a clinic room where I saw the nutritionist, my doctor, my nurse, a blood draw, a chest X-ray. The usual routine. An empty hospital. Three hours later, I walked back to my car. I took off my outer layer of clothes. I piled them carefully on the floor of my car (forgot a bag, damn!). I got in. I took a breath. I felt like shit. I drove past the tent.
I am getting treatment at home. I still have a fever and a cough and am more tuned in to every sensation in my body than usual, which is a lot. Too much. If I have to get admitted to the hospital for treatment, they set up a special set of rooms for “easy CFers.” Code speak for non-Covid. CFers are never easy.
CF brings uncertainty and consistency. Outside of a pandemic that targets my weakest of critical organs, this would be part of my common narrative. We are inside of a pandemic not witnessed in modern history. I knew why fear took the wheel and I let it. I knew I had to take it back. This is a recurrent cycle in my CF story. But in a pandemic, there is a palpable static-like electricity in the air. All of a sudden everyone in the world knows the weight that fever and cough lay on us.
Reflecting on this, I am in awe of the care and detail in the process. And here’s the thing — this is happening ALL over the world. There is no exemption from this. Swabs up noses on every continent, in every country, in every city, even in remote outposts. It’s a scale nearly impossible to grasp. It’s a scale of medical care and preparation that requires our thoughts and attention. It’s a scale that demands our leaders support these gowned-up folks who are swabbing the noses and intubating the sick and blistering their faces with masks that are rotting on them as we speak. And then, we think of those without this access. Without knowledge of navigating the system or priority testing or a clinic on speed-dial. Without the privilege of CF clearing access to care.