I wake with a start to flashing lights, blue and blinking against the darkness of my bedroom. Numbers. My body feels heavier than normal, like I have a weighted blanket on, but I don’t. It’s on the living room couch. The base of my skull aches. So does my lower back. 88, 88, 88. It’s not changing. That number is meaningful. I know it. Oh, yes. It’s the year I graduated high school. Now orienting myself, I realize it’s also the number flashing on my trusty pulse oximeter. Alarmed, I force myself to sit up.
Damn! “The doctor told me to sleep on my stomach but I keep waking on my back.”
My body has been trained to back sleep. I’ve used a cervical traction pillow for 10 years now. It’s been a godsend. I’m a nurse. I herniated a disc in my neck on the job years ago while manipulating equipment and my tired body working a double shift. I started my nursing career in the ER and ICU but transitioned to labor and delivery a few years in. After lifting and moving patients, day in and day out, something was sure to give. It did. My neck snapped, or cracked, or shifted. An MRI would prove all three. My body screamed “enough.”
Was it the same silent internal scream that woke me just now? “Enough!” “Enough sleep.” “88 is too low!” “Wake up and die alive!” My late mother used to say that phase to me when I had watched too much TV or slept long into a Sunday afternoon, as teenagers are supposed to do. “Wake up and die alive.” Was she watching out for me now? Did she wake me up?
“But, mum. I’m not dying. I’ve been to the doctor. I’m not even sick enough to be hospitalized. My pulmonologist gave me dexamethasone and azithromycin just yesterday. He ordered home oxygen and instructed me to sleep on my belly. I’m not even sick enough for my insurance to approve same day oxygen delivery. I’m even healthy enough to be up writing this diatribe at 2:43 in the morning. Well, actually it’s fear that’s keeping me awake. But shhh..don’t tell anyone. At least writing will distract me from my thoughts.”
So, I sit up, prop pillows that in turn prop my oxygen level up to a healthy 97% and I breath in deep and deliberate. My headache fades. My back pain eases. I lean over and grab my computer and write for the first time in three long months.
* * *
It’s in me. First it invaded my husband, then my two children. Now me. That seems to be the order of business in my house. It’s as if my body decides it cannot get sick until the others are on the mend. In 2017, it was influenza A. My husband brought it back as a souvenir on one of his many work trips to Japan. 2018 brought us Influenza B. “Are you serious? We all got flu shots!” Now it’s SARS coV-2 (aka COVID-19.)
This time, the fated souvenir came from a trip to the gas station and Home Depot. My husband hadn’t been out of the house in weeks. Since quarantine started, I had insisted on being the only one to go out and get food and supplies. After all, as a nurse of 27 years, I knew sterile technique. He retorted “You’re being paranoid and controlling” — traits I openly admit to. I got them from my mother. “You forget. I worked in a genetics lab. I also know sterile technique.” He was right. He was smart. He was a trained scientist who now worked in biotech. He probably knew germ theory better than I did. He donned his mask, armed himself with Purell and headed out. It had been so long since he left the house or did anything normal. He was itching for a change of scenery. Who could blame him?
It was May 1st (May Day) in Illinois and everything was blooming. My husband had developed bad allergies since our move from California three years ago. That evening, I recall commenting on his eyes. Wow, your eyes are really bloodshot and swollen. Your eyelids are so puffy. Do they hurt?” “Damn allergies,” he said. Where are my drops, Hun?” “See, you should have let me go out instead.” I smirked while handing them to him.
I am an armchair epidemiologist. In high school, I had pipe dreams of working at the CDC with Anthony Fauci. My mom was earning a biology degree and was writing a paper about a new scary retrovirus called HIV. I was hooked. Later, I busied myself reading about outbreaks of Ebola and Dengue fever, SARS and MERS while eating popcorn and sipping on juice boxes alongside my two kids while they played with blocks and watched Super Why and Caillou. When the news struck of a novel virus spreading in China early in January 2020, I devoured every news article I could. This was the one we were waiting for.
The lockdown was no surprise to me. I took the initiative and canceled our spring break trip to California, even though a dear old friend had planned my 50th birthday party where 40 of my dearest friend and family were set to attend. This was weeks before the government advised against non-essential travel “in an abundance of caution.” Friends thought I was an alarmist! Some still do.
I turned 50 a week into quarantine. Everyone was still adjusting. No one had their acts together yet. There was no car parade or zoom party for my milestone COVID birthday. I transitioned to middle age with little fanfare. The only card I received in the mail was my AARP card. Strangely, that was also the last month I menstruated. (I know, TMI.) It would seem my current event stress tolerance had finally reached a tipping point that kicked me into menopause. It didn’t take long for the compounding COVID -19 pounds and the absence of my-bimonthly dye job to make me look the part of middle age. Now months into isolation, with 88 blinking back at me, I feel the part too.
88 is an ominous number for those of us in the medical field. With a pulse ox. of 92%, I would place a nasal cannula (low flow oxygen) on my patient. But at 88% I would choose a non-rebreather face mask (high flow oxygen) instead because if their oxygen level remained that low, they could sustain permanent organ damage. I know medicine practices change rapidly and that I was trained old school. Things that were once routine, like bed baths and enemas and now even hand holding, are now passé. I can roll with change, but I honestly did not foresee that a day would come when a sudden oxygen saturation of 88% would buy you a home oxygen machine rather than a hospital bed. We have entered post-modern COVID times. The old rules no longer apply.
More honestly, I’m scared. But I can’t show it. I have an 11-year-old daughter who was crying yesterday as I left for my doctor’s appointment. When I grabbed my car keys and bag my dogs seemed concerned too. I had packed a little bag thinking 88 might be the magic number that would buy me a hospital staycation. “Mommy, you have to come home. I can’t go through what I went through with daddy. I can’t. It was too hard.”
It’s been a tough few months for all of us, but my daughter in particular is struggling the hardest. She has not adjusting well to the sequestration, the home schooling, or having to go cold turkey on a pretty serious chipotle addiction. My 14-year-old son, on the other hand, is thriving. “I’m an introvert, mom. I was built for this!” He retreats to his bunk bed lair where he is now master of his destiny in Minecraft Dungeons, Stardew Valley and the Binding of Isaac. He has been asking to be homeschooled since the 3rd grade. He finally got his wish!
Things changed dramatically for us when their dad came down suddenly with flu-like symptoms on May 4th. (May the 4th be with you!) We took the proper precautions. He was banished to the guest room for days. While he sweated it out alone, my two kids tried to navigate the news and their emotions between classroom zoom meetings. They missed a few. Who gives a shit!
I busied myself sterilizing door knobs, facet fixtures, countertops and anything else in sight. My son came out of his lair a bit more often for hugs and food and clung to the dogs like a toddler does his blankie. My daughter busied herself sewing double-ply cotton masks for local essential workers, and baking fancy treats like coffee cake and macaroons. She learned to make homemade Frappuccino’s (vanilla, strawberry, matcha) and whipped coffee frappés. The strawberry ones are to die for.
My husband’s symptoms strangely and suddenly disappeared 4 days later. After a negative nasal-to-brain swab, and zero respiratory involvement, the docs insisted he was safe. He couldn’t have had it but even if he had, as long as he was symptom free and 7 days out from symptom onset, he was not contagious. So, on day 8 he rejoined us. The dogs, the kids, and the short order cook (me) were so happy. But the advice was wrong.
Two weeks to the day of his first symptom, my husband crashed. It was a Monday. He was working from home at his cool new suction standing desk sipping coffee and feeling fine at 10 am. He came into the kitchen, where I was homeschooling the kids at 10:30 saying his legs felt funny. “Honey, I don’t feel quite right. I feel like my knees are going to just give out underneath me. I’m going to lie down for a bit.” Less than an hour later his lips were blue, his face mottled, his hands and feet cold and yellow, like day-old dead. He had rigors (that’s nurses speak for vigorously and uncontrollable shaking–basically, shivers amplified–and is the tell-tale sign for full blown sepsis, way more ominous than an 88% oxygen saturation)
But his temperature was normal? So was his mentation? First murder hornets, now a zombie apocalypse? My brain couldn’t compute what I was seeing. By the time it took me to find my phone and reach the doctor, his fever was 103.1.We grabbed his phone, his charger, the keys and a couple of homemade masks, and drove the two miles to deposit him on the doorstep of the local hospital. Like a desperate mother depositing a newborn she loves dearly but is ill-equipped to care for, I left and soberly waited word.
My husband was in the ER for 6 hours before they admitted him. They ran a slew of tests and labs. He would send me random texts and photos of his monitor between lab draws, his EKG, being whisked off to cat scan and x-ray and his cat naps. Before his transfer, a very kind nurse filled me in on his status and lab results. His numbers were really off. D-Dimer, 15. Ferritin, 1681. PCT 16. C-reactive protein 10.8. Magnesium 1.4. LDH, 439. AST, 445. AST, 314. Lymphocytes 3%. She read these off with a deadpan voice, but I had worked ER and ICU. The numbers she was reporting were WACK. He was REALLY SICK. SHIT. She informed me that they sent off a nasal swab for COVID, gave him ibuprofen, oral antibiotics, IV magnesium and were sending him up to a COVID unit “just in case.” Since he had zero respiratory symptoms and an elevated PCT which usually indicates a bacterial infection, it was unlikely.
It was a long night. I called the night nurse for an update just before her change of shift. She said my husband’s blood pressure was very low and she was contacting the on-call hospitalist for directives. Not long after, the night shift nurse practitioner, who was on call upon his admission and was just ending her shift called. “His blood pressure fell to a dangerously low 60/40, but was now up to 80/60 with half a liter of fluid.” (If 88 vs. 92 is the difference of an oxygen mask or a nasal cannula, a blood pressure of 60/40 vs. 80/60 is the difference of a med-surg bed or an ICU bed. He wasn’t pumping enough blood to keep his organs alive!) I panicked.
I knew from my experience, septic patients whose blood pressures drop dangerously low need multiple liters of fluid to perfuse their organs, not the equivalent to two cups of water. I started screaming and crying on the phone. Not my best moment.
“Oh my god, he’s going to die. Do something!” She calmly explained, they couldn’t give him more because COVID patients have a tendency to shift fluid into their lungs and this could make him require a ventilator. She continued. ”Strangely, COVID patients actually tolerate low blood pressures and low oxygen saturations extremely well. She reassured me that he was fully awake, talking clearly and was actually feeling ok. We’re acting cautiously for a reason. We’ve got him. He’s going to be OK.” I was terrified, but reassured. I thanked her and hung up the phone.
After that, communication became spotty at best. The day shift nurse didn’t return my calls two days in a row. Andy called between rests but he was sick, and fatigued. I didn’t want to scare him with questions. He wouldn’t have the answers anyway and asking would just feed his anxiety. He was being so brave. Like many men, he isn’t usually a stoic patient and he doesn’t do hospitals well. He nearly passed out when I cut my finger at his 35th birthday and required stitches. He was a comforting catatonic during the bloody delivery of our first child.
I gave him what he needed, a loving wife and a good cheerleader. But there was no one there to give me what I needed. Information. Communication. Reassurance.
It wasn’t until a physician friend kindly offered to make a few calls and look into some things that I was included in the loop of communication and got any follow-up lab values and test results. I was now late Wednesday. The infectious disease hospitalist of this suburban Chicagoland hospital had diagnosed him with typhoid. TYPHOID? Why? Because he had a negative COVID nasal swab (did I mention he had no respiratory symptoms) and he had diarrhea and a high fever. He had seen it a hundred of times before. He was trained overseas.
But he had failed to call me to get a detailed history of my husband’s present illness. He failed to note the complete lack of any GI symptoms until antibiotics were started and he was non-plussed when I informed him of my husband’s swollen eyes three days before first symptom onset, even after I faxed him a Lancet article stating up to 50% of COVID cytokine storm patients don’t present with respiratory symptoms, a JAMA article citing unusual but statistically significant cases of COVID-19 patients gaining transmission through the eyes with negative nasal swabs and elevated PCT’s, and research directly linking elevated PCT levels to severe COVID-19 infections. (I kept myself busy while waiting for word at home.)
As a nurse, I am very concerned with the state of hospital care in the time of COVID. I know it is an extremely challenging time for all, but we must do better. My husband was too ill to give a complete history. Without family allowed at the bedside or included in the intake, even by phone, compromised hospital patients in the time of COVID have no voice and no advocate.
This compromises care and can lead to misdiagnosis and inappropriate treatment.
Dr Typhoid placed him on multiple broad-spectrum IV antibiotics which only further exacerbated my husband’s hospital induced diarrhea. The dogged doctor then proceeded to decrease the blood thinner he was placed on that would save his life if it were COVID. Thankfully, the night shift hospitalist, the nurse practitioner who reassured me days earlier that “she had him,” was working that evening, noticed the change, corrected it immediately and insisted on stat scans at midnight to ensure no clots had formed in his legs or lungs during the subtherapeutic dosing. She called me to get approval and to inform me she was on it! But what does that say about a hospital when the doctors do not agree on the diagnosis or treatment plan?
Miraculously, by Thursday, my husband’s labs were normalizing and his fever was down. He was even able to Zoom attend his son’s 8th grade graduation ceremony! All cultures came back negative too so I requested a COVID IGM and IGG before discharge. I thought, without a positive culture, there still was no definitive diagnosis. With great reluctance, Dr. Typhoid ran the IGG but said the hospital didn’t have the capacity to run an IGM.
IGG shows an immune system that has had, and recovered from an infection. It takes over 2 weeks of fighting an illness for the body to produce it. The IGM shows up first, during the earlier stages of fighting off a disease–it shows up about a week into the fight. A person can still transmit the disease to others at this stage. His COVID IGG came back negative.
They sent him home on Friday to recover. His discharge diagnosis in his chart was “Typhoid Sepsis-NOT COVID.” They sent him home with food preparation instructions. Dr. Typhoid insisted that even IF it were COVID, patients are not contagious if they are afebrile and are 7 days out from first symptom onset. Therefore, no isolation was necessary.
I know that is the current company line, but that conclusion does not sit well with me. I do not see the data to back it up. I did not trust Dr. Typhoid’s advice, and our own personal history, with my husband’s symptoms returning so suddenly and profoundly 14+ days in seemed evidence to the contrary. I desperately wanted my husband home and safe, but I did not want to risk infecting me and my kids. We were still asymptomatic. Or were we?
Just hours before I was set to pick up my husband, my son’s nose turned on. Like a faucet! He went through two full boxes of tissues in two hours. There was snot everywhere! His eyes glazed over. I took his temperature, 99.7. “Mom, my stomach hurts too.” Ugg! What do I do now? I could sequester him and my husband in the back room but my husband needed his rest. He would be too sick to care for my son on his own. Would it even be possible for me to care for them without contaminating my daughter without home PPE? And in reality, the cat was likely already out of the bag. If my son now had symptoms, my daughter and I were surely already exposed. She and I have compromised lungs. This was not good. With great reluctance, I decided the only practical course of action was to ride the wave together. Sometimes practical logic sucks. At least we would all have each other.
Where was I? Oh yes, Friday May 22nd. My youngest sister’s birthday, my husband’s hospital discharge day and the start of my pediatric rotation.
The next couple of weeks consisted of TID temperature checks (that’s three times a day for non-hospital folk) and nightly pulse oximeter checks. A neighbor was kind enough to lend me her spare when Andy first got sick. The stores were out and Amazon was on back order. For the next two weeks, there was not a day that went by without one kid or the other having a temp. Just under 100, not high enough to call the doctor but not low enough to breathe a sigh of relief. One kid had a bad headache one day, the other woke with diarrhea and nausea the next. Both were acting in their typical sick style. My son, uncharacteristically cuddly, my daughter ornery as a tired old mule. Throughout it all, I cleaned, cooked, worried, mowed, ordered from Instacart, worried, and went on walks around the neighborhood with my husband to build up his lost stamina.
A week ago today, 20 days after my husband’s hospital discharge and my kids first symptoms, I mowed the lawn. I started coughing when I went to bed. Coughing after mowing is not abnormal for me. I have bad lungs from a sick building I used to work in. They are sensitive to fumes. But afterward, my lungs felt like they were on fire. That was odd. I grabbed the pulse ox. 89! “That can’t be right? Can it?” I sat up and took a few deep breaths and it jumped to 97. “That’s more like it,” I thought. I poured myself a finger of Barenjauger, a yummy honey liquor every medicine cabinet needs, sipped it to quell my cough, and went to sleep.
I felt fine the next day. The kids were finally afebrile. Andy was back working at his standing desk. It was gorgeous out, sunny and warm with low humidity. I decided to take advantage. I trimmed the hedges, took some nature photos and cut some flowers from my garden. Later that day, I celebrated a niece’s High School graduation via Facetime. YAY! We were back to pandemic normal! But that night, the same thing happened. A burning cough and a low pulse ox. This time I kept it on. It stayed low when lying on my back but was up to normal if I turned on my side or sat up.
I spent the weekend in denial. “I’m not getting sick. I’m not getting sick.” I made pancakes. I did laundry. I accompanied my husband on his daily recovery walks, but when he declined to take the hilly street to the right, I didn’t push him this time. I was feeling winded already. I attended another niece’s college graduation party–go Banana Slugs! But now I was sipping Barenjager in the afternoon to hide my pesky dry cough from my Zoom family. My energy was good. I didn’t have a fever, but my lower back and legs ached. Maybe it was just from the yardwork. Sunday evening, I got an oxygen reading of 83. Now I was scared.
I spent Monday morning calling local urgent care centers to see who could do COVID testing, x-ray and labs. I called my primary care physician and my pulmonologist call lines and was directed to messaging systems where I could text symptoms and set up virtual encounters. It took COVID to finally bring healthcare into the digital age! It was late afternoon before I spoke with a live body but gratefully, I secured an appointment for the following morning with my pulmonologist who was equip to see COVID patients, could do the dreaded nasal swab and take an x-ray. By this time, I was short of breath coming up stairs and easily fatigued doing household chores. A mild but present pressure and tightness in my chest accompanied me wherever I went. I watched impatiently to a blinking 90, waiting for morning to come.
I had an early morning appointment. I arrived early and called from the car so they could gown up as instructed. “Enter through the side door, the one with the large pink COVID warning on it.” Within minutes of my arrival, my vitals, chest x-ray and nasal swab were done. It really wasn’t so bad and was over in a second. Why are people making such a big deal of it?
My doctor was fantastic. As a Chicagoland pulmonologist, he was now far more familiar with the disease process than he would like to be. Luckily, his PPE, diligence and up-to-date knowledge has kept him disease-free so far, knock on wood. He stood in full garb, hand on the door, 6+ feet away and told it to me straight. You have COVID. Whether the test comes back positive or negative, you have COVID. You will feel worse before you feel better. You will not feel like yourself for at least another 2 months, if not longer. You are infectious. With what I am seeing, your family could be shedding virus if they live with you, even if they have no symptoms and have recovered from it. He prescribed me meds and oxygen and gave me instructions. But he prefaced them. “These are just supportive measures. We have no treatment. And you are the healthiest COVID patient I have seen here yet, likely that’s because you are here early in your course, so take care and call or text with any questions or changes. And with that, I was sent home.”
That was yesterday. My headache is now gone and my oxygen blinks reassuringly at 97. I will not sleep soundly until I get my oxygen tank … but by that time, the steroids will likely have kicked in. Oh well. My doctor forewarned of the fun involved there! But I am grateful. I am home. I have a plan. I am the last one to get sick in the house so I get company through my illness. I have the tools to monitor myself and the meds to support my body in healing. I have no idea what tomorrow will bring. The only certainty right now, other that the pending sunrise I am about to witness, is that I will not be choosing Dr. Typhoid’s hospital should I require further services.
It turns out that the delay in my home oxygen delivery was because COVID is not currently a qualifying medical condition on ANY insurance. I had to pay out of pocket to receive it but even that required upper management approval. It seems home oxygen requires a chronic condition like COPD or congestive heart failure. Home management is best for non-critical cases of COVID. It frees up much needed hospital resources, keeps cost to a minimum and keeps healthcare workers safer. COVID is not currently considered a chronic condition; however many people are suffering months long debilitating symptoms. They even have a name. Long haulers.
The day after I wrote this, my daughter relapsed. She had a high fever, chills, weakness, uncontrolled shaking, a rapid heart-rate and stated “the air feels thin!” She required an emergency room evaluation because our local pediatrician office has a policy of not seeing COVID patients. I was not allowed to take her because I had symptoms. My husband was a rockstar! Her symptoms resolved as quickly as they came. The experts at Lurie reassured us that children handle the waves of COVID symptoms far better than adults and she was safe, for now, to ride it out at home. The very next day, my husband’s symptoms returned. Fever, chills, body aches and malaise. They are now long haulers too.
Seven days after my test was performed, my doctor called with my COVID swab result. Positive. Validation leaves a bitter taste in my mouth. If my husband had gotten proper testing and safer instructions. my kids and I may have been spared. We are convalescing side by side, me with my oxygen and steroids, my daughter with her breathing treatments and Tylenol. My husband is pushing himself, working from home, between bouts of symptoms. My dear son is helping out around the house, taking care of the dogs and he even made us cupcakes. There are a lot more COVID stories out there. I believe ours will have a happy ending. I just don’t know how many more chapters there will be till we get there. But we have each other. We have a roof over our heads and friends that deliver meals and supplies. We have access to treatment. We are the lucky ones.