story from the ventilator
When I spoke about Covid as the war we’ve been training for, I meant not only are we CF'ers already trained in thorough hand washing, the 6-feet-apart rule, and mask-wearing. We are mentally conditioned for fevers. Coughs. Ventilators. Isolation. The emergency health care system.
I was diagnosed with Cystic Fibrosis (CF) at 25 years old. A very late diagnosis. Like, 25 years late. This means that many of my facebook friends don’t know me with CF.
Mental preparation for the health care system is not a short-term practice. It’s a life long marathon. Our bodies dictate when, but our access to health care dictates where, how much, and with whom. This. Is. Important. With CF, our systems and infrastructures are established and in place. If we are fortunate enough to have insurance, we know where to go. If we don’t have coverage or have confusing coverage, we know where we have to go and the cost of going. I’ll talk about billing some other time.
Right now there are thousands and thousands(!!!) of people around the world entering the world of acute health care for the first time. I remember that shock.
My story isn’t Covid, and it was 25 years ago, but it is a story that exemplifies what these numbered people are going through. The icy-shock of emergency care.
I was twenty years old. I didn’t feel well. It was my twenty-first birthday. All of my friends in this wonderful group of folks were older and I was not going to miss my first legal entry into the bar. I had a fever, a deep cough, I felt hallow and achey. I went out anyway. Day 1.
Day 2. I sat down on the couch in our apartment and the whole room swung up with me. I couldn’t get up. The fever in my body was lead weight. My friend+roommate had to work, but decided to take me to the emergency room first. I don’t remember if she stayed with me or not. I don’t remember checking in, giving the woman in scrubs my driver's license and insurance card, sitting in the waiting room with the fluorescent lights and hard blue plastic chairs. But I know that was the drill. I’ve done it a million times since.
There are many kind strangers that you surrender to the second you arrive in the health care system. Mostly kind. Some are cranky and I can’t say as I blame them. This is the realm of complete, raw vulnerability. When the fevers wrack your body and you’re sipping air through a straw, you will go with anyone with a wheelchair. No stranger danger. Just please don’t make me walk.
There is no foreplay. No courting. It’s straight from their name, which I can never remember but appreciate knowing, to some handsy business. Somehow getting someone’s name brings me one step closer to knowing them before they wrap my arm in a blood pressure cuff, put the oxygen saturation clamp (it’s padded, don’t worry) on my first finger, stick the thermometer in my ear, drill me with questions about symptoms, conditions, my past few days. I try not to cry from the relief that someone is going to take care of me. I sometimes get a sympathetic look. But mostly we get down to it. I appreciate that. Pity and sympathy are not my thing.
Then the wrist-band. This is the most important thing you can have in the hospital. It becomes your identity in consciousness and unconsciousness. Every person you come into contact with — What is your name and birthdate? They match your response to your bracelet. Then scan the barcode on your wristband, printed under your name and birthday, sending your identity confirmation to the laptop on wheels or computer next to your bed. It’s hard plastic, scratchy, and sometimes can be too tight. It’s on for the duration.
I got a warm blanket across my lap and was wheeled back to a booth. Not really a booth, but a room in the ER. It felt like a booth. The person transporting me asked if I could walk. Sometimes I can get myself to the bed. Twenty-five years ago I could not. When I finally got to the bed a flurry of activity began. Like someone hit a start button. Somehow five people dressed in matching blues felt like thirty as they filled the booth with more cords and cables to connect. Somehow I was in a gown that tied in the back and felt like a cardboard envelope. Needles came in and out of both arms - blood out, hydration in. A tube with a very specific smell of new plastic was placed across my face, in my nose, wrapped behind my neck. This flurry continued for maybe an hour. In this instance, without a diagnosis, I was quickly transferred upstairs to a not-booth-like room.
Days 3-5. The thing to know about the health care system is that time becomes something different. There’s a clock in the room, but it’s meaningless. Days blend and stretch and shorten. The nurses record the date on a whiteboard in your room. It doesn’t matter. But, the clock is everything to your team. They are programmed to a timed cadence of medication and vital sign measurement and questions and the IV pump that makes Star Wars R2D2 sounds in the background. Again, complete surrender.
You don’t get to choose who comes in and out (well, you can tell them no thank you, and I’ve heard stronger rejections from down the hall). 4 am the door opened. The bright lights from the hallway filled the dark room. Someone in a mask asked for my wrist band — What is your name and birthdate? At 4 am, I’m never sure if I’ll get this one right. Then the red-handled tub was placed on my bed, my arm without the IV was laid across the blanket, a rubber tourniquet was wrapped around my upper arm, and a slight whisper of “A little poke” came seconds before a needle is gently/sometimes gently pushed into my vein. A tube was clicked into what came out of my arm and four to five to ten glass vials (marked with my name, birthday, and bar code) are filled with my blood. Rich ruby red and rushing out of my body as though it’s trying to escape how I feel. I wish I could do the same. I felt worse. And then worse. Never so bad.
Day 6. The lack of oxygen in my body was alarming and the insides of my lungs felt like breathing through a wet, swampy pillow. My parents sat with me, my mom never left, doing shuffles around the room with a steady stream of nurses and respiratory therapists and doctors and student doctors. And then someone came in with a dose of a drug that has become my nemesis - solumedrol. This is basically prednisone in liquid form. Prednisone is a lifesaver and a cruel companion. It is a steroid that is incredibly effective at reducing inflammation. And carries some costs. The liquid steroid went in and my heart rate went up. Way up. So fast. That’s the last thing I remember besides the swarm of people rushing to my bed.
Day 16. My eyes would not open but I saw light through my eyelids. I felt around me with my fingertips. My arms were heavy and stuck. No idea where I was. A mass of something was on my face. Plastic? I slowly found where I thought my mouth and nose were. Nope. Instead, it was a mass of plastic - square maybe? Corrugated plastic ran out of my face to somewhere close by. My eyes eased open. They reminded me that they had been closed for a while by the way they stuttered and stuck. As the light from the room entered my brain, I started to take in images of what was around me. White. All white. Beeping machines. I was so limp, so tired. The clock. 11:17. Am or pm? No idea. I couldn’t tell if the light was from the sun or the fluorescent lights that filled the ceiling.
A nurse came in with joy in her voice. “Hello! We’re so glad to see you back.” Back from where? I couldn’t talk. My mouth and throat and lungs stuffed with plastic. So much plastic. The smell of it permeating my every other sense. All I could do to respond was nothing from a mouth full of things. She did her doings around me, moving about the bed in a precise and familiar way. I think she was talking? I don’t remember. Then. She did the best thing ever. She took the plastic out. I got to come off the ventilator. I didn’t even know what a ventilator was.
There is no feeling of relief like removing the plastic from inside of my face. I don’t know how or where it all went. I do not know about the medical science of this life-saving device. It’s about the sensation. What it felt like. This amazing woman who I would propose to if I saw her again said, “Ok. When I say, take a deep breathe out. Don’t stop until I say.” So I mustered up some breath that felt like a damp sock, took it in, and when I barely blew it out, she pulled. The corrugation of the tube clicked along the inside of my eye bone. (Sensation, not science). Click-click-click-click for what seemed like a minute. And then it was gone. All the plastic and tubes were out of my face. There are no words for this type of relief. It was like not knowing how dark it is until someone turns on a light. I knew it sucked, but the degree of suck was hard to tell until it was gone.
I never ever want to feel that kind of suck ever again. Ventilators have a very specific suck factor.
Still Day 16. I didn’t know the days, yet. No sense of time. My sweet mom came into the room. She looked at me. Took it all in. A very big smile unique to her beautiful face. She said, “Hi!” It bathed me in something good. And what did I do? I said, to this God-loving woman, the first thing out of my mouth, “I’m not Catholic.” Sorry, mom.
I was in a coma for ten days. When my heart rate spiked and my oxygen plummeted, the medical team used a precise mixture of chemistry I’ll never understand and then induced a state where I would not know what my body would be subjected to. Where I would not fight. Ten days lost to me. Ten days of intensity for my family and friends. Ten days in the Intensive Care Unit mostly laying there but also doing some fighting. I’m a fighter. Coma or no.
The docs did not know what was causing the infections. My friends were questioned in a room, one-by-one to see if I used needles for drugs. Heroin? That was a resounding no - I used to be afraid of needles. Maybe it was my heart - endocarditis? Maybe HIV/AIDS? Meanwhile, I was resisting the ICU. In short fits, I thrashed. I fought for breath. They restrained me. They tied my wrists to the bed. Get this. My mom still has a straight jacket that they were going to use to get me to stop pulling at the cords and cables keeping me alive. A fucking straight jacket. They were told to say goodbye and had a priest come in to read me my last rites. A burial before a death.
It was staph. Staphylococcus. Staphylococcal pneumonia. In my lungs and then my blood and then my whole body. When they figured out what they were fighting, the battle was won. Science and art blended into people with big brains and incredible hearts saved my life.
Days 17— 66. I spent the next seven weeks in the hospital. My mom slept in the craziest positions on makeshift recliners and cushions called beds. Every night. She never left my side. Talk about resilience, this woman.
Coming out of the coma turned out to be the easiest part of the event. Those seven weeks in the hospital and the next six months were a long, slow, slippery climb out. I lost all of my muscle mass - 43 pounds. I lost my ability to take in a breath without a fluid-filled cough pushing the breath back out. I lost my apartment, my job, my semester in college. I had to go back and begin again. I had to move back into a new body with a new mind - fear tucked into the corners of each fold. Trauma and anxiety became co-pilots to my ambitions for a better life. This gift of life.
Those ten days defined my medical adventures since. The infection caused damage in my lower left lobe and upper right lobe of my lungs. This damage is called bronchiectasis. For the coming years, I suffered from recurrent pneumonias, sometimes four times a year. Back to the hospital. Back out of the hospital. Recurrent traumas. Recurrent ambitions for better. Travel and a marathon to prove (to myself) I am still a fighter. Then sickness.
Later, the Cystic Fibrosis diagnosis.
And this is the part where I am currently fascinated. The long journey of healing. It is not get-off-the-ventilator-and-feel-better. It is a slog. But, later. For now, let’s focus on those who are in the thick of it. The soup of life-saving chemistry and machinery.
let’s give them names.
This story of mine is for me and also for you. These nameless, faceless people fighting this virus all around the globe are slamming into the health care system. Cared for by fighters determined to get them off of the ventilator alive. They are in bodies that have taken over. They have no control. Mothers and sons and sisters and grandfathers….people with names and stories of their own. Many of them in makeshift facilities. Scared. No doubt terrified.
It’s a shock. It’s all sensation. It’s complete surrender to strangers in layers of protective gear (hopefully. dear god, hopefully.) Stories like mine - hopefully with the same ending of survival - of lungs filling with goo, ventilators, comas. At a scale unseen to humankind.
Let’s write the stories of the people with plastic in their faces drowning in their own bodies. Who are laying in beds without someone like my sweet mom at their sides, because Covid. Let’s keep them from being statistics in this unfathomable pandemic. Instead of saying we lost 546 people today let’s name them and know them as individuals who may or may not have known the shock of intense illness and death that came in a sudden, unpleasant way.