It was early April.
The pall of coronavirus (also known as SARS CoV2 causing the disease COVID-19) had already made its home across the country for just over a month. The streets in Cleveland had become eerily quiet, save for the traffic to and from University Hospitals and the Cleveland Clinic.
The last snow of the year had melted.
As a second-year neurology resident, I was still a part of the traffic flow. The days had been restructured, with contingency plans in place should multiple residents have to go into quarantine, or worse, fall ill.
But for now I had my scheduled day off.
I had just finished cooking a large batch of chicken curry when the phone rang. My brother was on the other end, scared. I hadn’t heard from him for several months.
“Dad hasn’t been feeling well.”
Both my father and my brother were still on Long Island, my home from the age of three until I started residency in 2018. In early April, Long Island, like the rest of the New York metropolitan area, was being devastated by COVID-19. Thousands were hospitalized, and more still were at home struggling with symptoms.
For my father, it started with gastrointestinal symptoms, and would soon be accompanied by low-grade fevers. Before COVID-19, food poisoning would have been a reasonable possibility. Perhaps it could have been a mild gastrointestinal infection, not unheard of as the weather started to ease and people began to mingle at outdoor gatherings and picnics.
It was unclear how my father had been exposed.
The first documented case of COVID-19 in New York State was March 1, identified in a health-care worker who had recently traveled from Iran. By March 19, the number of confirmed cases had jumped to over 2,000 (in part due to increased availability in testing). On March 22, Governor Cuomo issued an order instructing non-essential workers to work from home.
Around March 22, my father (as part of ongoing renovations) had brought construction workers over to build out the bathroom on the main level of his house. He had not worn a mask. His symptoms started just about 5 days later.
During the days thereafter, he tried to treat himself symptomatically. Because the surrounding pharmacies had been cleaned out, there was no Tylenol or store brand equivalent anywhere except for Tylenol PM that my brother’s friend was somehow able to procure. My father took it every 6 hours, spending the ensuing days and nights perpetually on the edge of twilight.
This was the time when potential symptoms of COVID-19 were still limited to fever and dry cough; the concerns rested on travel history to purported hotspots (China and Italy) rather than endemic spread. Meanwhile, the hospital where I work had just implemented screening checkpoints at all entrances. Armed with forehead thermometers, volunteers would ask only those questions.
“Cough?”
“Fever?”
“Travel to a known COVID hotspot?”
With a quick swipe across the forehead with the thermometer, and an acceptable temperature reading, we were allowed to enter the hospital. Had my father, with his gastrointestinal symptoms, been screened at that time, he would have not been thought to be potentially COVID-19 positive. The fever may have been the tip-off, but without other COVID-19 symptoms deemed “classic” at the time, he may have skirted by.
In the coming days, it became clear that he should go to a hospital. The advice he had been receiving was mixed. Because of his gastrointestinal symptoms, his PCP felt it more likely to be a stomach bug. Even if it was COVID-19, he said, his symptoms were mild enough to be managed at home. By the PCP’s own admission, the hospital systems were buckling at the knees as it is.
With each passing moment, with no word on the status of my father, I felt myself creep closer to the edge.A week after first learning about his symptoms, my brother texted me to say my father had become increasingly short of breath walking up the stairs. While sleeping, his breathing appeared more rapid.
I asked my brother to count how many times he was breathing within a minute.
Thirty times, he said.
Normal is somewhere between ten and twenty times a minute.
On a video call the next day, I got around the same rate watching my father seated at rest.
It killed me to see him like this. Normally he was up and about, doing his best to prove he could still walk faster than the rest of us. He took pride in his relative health at his age, with only mild hypertension.
When I was growing up, he would be the one pushing home remedies, like rasam, a heavily spiced-infused tomato and garlic-containing thin curry. When he was diagnosed with hypertension, he would spar with his PCP over what he really needed to be on. He would turn up at the clinic with an armful of data, often sourced from places like the NIH, detailing side-effects of one medication or another. When all was said and done, he was reasonably well-controlled on just one medication: hydrochlorothiazide, a water pill.
Now he sat trying to manage the most simple of tasks: breathing.
It was clear that he needed to go to the hospital. His PCP continued to argue that his shortness of breath was more likely due to his continued gastrointestinal losses, causing fatigue. Hearing that, my father was even more hesitant to go in. He was scared, wanting to see if things got better at home. Even when he fell trying to walk up the stairs and became altered in the moment, he stayed put.
If it was another patient, I would be firmly pushing for them going to the emergency room, pulling out all the stops.
It isn’t that I didn’t try here. It’s that as a daughter, some of that advice may have at least initially been less reliably received. I was still his little girl, in my frilly frocks. Never mind that I graduated from medical school about two years ago. He was proud of what I had achieved, but reconciling the fact that his little girl was a medical professional whose advice might be worth heeding—especially given how readily he went toe-to-toe with his own PCP—was no easy task.
The following day, I returned to work in the neuro-ICU. I had told my fellow and co-resident what the situation was, and both were understanding. Our census was small, in large part due to elective procedures being canceled due to the pandemic—and more troublingly—people likely avoiding the hospital entirely. The day lay open before us.
Before rounds got underway that morning, I whispered to my fellow that I needed to make a call. I slunk away and phoned home. I continued to push for hospital admission. First I tried pushing my father, then my brother, then my father’s PCP. It was when his PCP relented after hearing about his fall and how low his blood pressure was that my brother, finally, drove my father to the hospital.
For the rest of that day I worried. It was a struggle to keep my voice from wavering when discussing the status of my patients on rounds that morning. With each passing moment, with no word on the status of my father, I felt myself creep closer to the edge.
The resident in the ER finally called to let me know my father was there. She then proceeded to give me the details.
Normal oxygen levels in the blood typically are north of 90 to 92 percent. When he got to the ER, his blood oxygen levels were hovering at 65 percent.
It was not a value that was compatible with life.
Yet he did not have the dusky discoloration that settles into one’s lips and fingertips when oxygen levels were dipping low, nor did he appear visibly short of breath. He was still breathing rapidly, but that was it. The media would come to term this “happy hypoxia” though I always found the term a little unsettling.
He was whisked off and kept on his belly, or prone. The idea of this is that much of the lung volume sits closer to the back. Being on one’s back, or supine, does not allow for maximal aeration in the same way as being prone. By flipping over onto one’s belly, more of the lung can be recruited for ventilation.
His labs were completely off-kilter, with inflammatory markers and liver enzymes markedly elevated, and his lymphocyte levels low. His chest X-ray showed a diffuse pneumonia in both of his lungs.
Unsurprisingly, his COVID-19 swab came back positive. I had a pang of wishing my mother was home.
She was—only in her home. She had been in India taking care of my grandfather, as she had been doing for months-long stretches for several years. As COVID-19 began to take hold in India, she had reached out to my father towards the end of February. By then, the first cases were already identified elsewhere in the United States, though not in New York. He didn’t want her to come home at that point for fear she may fall ill. Soon after, Prime Minister Modi enforced a lockdown that was later extended to May 31. The whole country shut down and flights were canceled.
My mother was now trapped while her husband was critically ill.
My brother was alone on Long Island.
I was in Cleveland continuing to work as a resident.
My brother took on the task of keeping everyone informed of my father’s condition. I was the medical decision maker, in touch with the nursing staff and residents taking care of my father day in and day out.
I cried at the end of that day, knowing how by the numbers, my father had been teetering on the edge of death. If he had lingered at home any longer, he almost certainly would not have made it. I was glad he was finally in the hospital, but his course moving forward remained uncertain.
*
I have always tried to be good about keeping families posted, but never did I appreciate the value of a phone call with an update more than now. I would break off from our own rounds to call early in the morning, and would wait all day for an update from the nurse and the team. I knew why the updates were slow in coming. In taking care of COVID-19 patients, the mere act of entering and exiting a patient’s room is onerous. It can take upwards of five to seven minutes, sometimes more, to locate and then appropriately put on PPE. The same is true for removing and storing PPE safely. Multiplied over an unimaginable number of COVID-19 patients in a New York metropolitan area hospital at any given time, a wait was something to be expected.
The protocol at this particular hospital at the time was to start Plaquenil, also known as hydroxychloroquine. It would be administered as a loading dose followed by a lower, maintenance dose over the following five days.
I would be lying if I didn’t admit feeling some unease.
COVID-19 was a unique situation that could not have been dreamt up, not even in the most vivid fever dreams.Hydroxychloroquine burst on the scene early in COVID-19’s tenure. It is used fairly widely in rheumatology for managing conditions such as lupus, and has been used in the treatment of malaria. Its apparent rebirth came on the heels of data out of France. This was not a randomized controlled trial, and the number of patients involved in the study was small. It was suggestive of at least some benefit, but by no means conclusive. Hydroxychloroquine was not without its potential side-effects, the most concerning of which were fatal arrhythmias such as Torsades de Pointes—literally a “twisting of peaks.” It’s essentially a rapid heart rhythm arising from the muscular lower chambers of the heart, or ventricles, that if unchecked could lead to failure of the heart’s ability to pump.
“We shouldn’t be trying things just because we have no other option,” has become the common refrain among medical professionals, particularly with respect to some of the newer therapies being touted. I agree wholeheartedly. Yet with my father’s oxygen levels barely hovering in the 90s as he lay on his stomach, and the grim outlook that accompanied his presentation, I stood back and allowed the hospital to try their hand with it.
Over the first few days he continued to have trouble being anything other than prone. The slightest movement would cause his oxygen levels to dip. They decided to start Solumedrol and anakinra in hopes of boosting his response. Solumedrol is a potent intravenous steroid while anakinra is another rheumatologic drug that blocks interleukin-1, a cytokine that forms part of the cell-mediated immune response. Between the blanket effect of Solumedrol in tamping down the body’s propensity for inflammation during this infection—a large source of damage—and the more surgical blocking of specific molecules involved in fueling the cytokine storm seen in COVID-19, it was believed that this would further help my father’s clinical condition.
For a time, he was able to be flipped onto his back and sat upright. He still required the non-rebreather—a face mask that can allow for 100 percent oxygen delivery—with oxygen being delivered at 15 L/minute.
I was able to see him twice virtually because the nurse manager had been kind enough to set up a WhatsApp call on her phone (his was dead and without a charger for some time). He looked like he had been through the wringer, which was to be expected given his clinical course. Normally clean-shaven, white stubble was beginning to crop up on his face. I could appreciate his gaze, but it bordered on wild-eyed, the look of someone struggling to breathe but doing his best to hide it. I did my best to keep from crying during those calls, but it burst out of me later in the day once I was home. Then I’d call my brother.
We had become closer than we had been in some time, finding solace in each other’s company. Conversations that started out with medical updates would careen into the absurd, like it would when we were growing up. I don’t know if I ever fully gave myself permission to laugh when everything started, but my brother didn’t ask. If my brother had failed to make me laugh during our conversation, my husband would find a way to succeed later. Laughter, therefore, became an inevitable, albeit curious part of each day.
Crying became a common feature too. In medicine, we try to keep our emotions in check. Even as death and disability descend on those we treat, we stave off our urge to give in to those feelings. Our release comes after the day is done, or if needed, in stolen moments in quiet spaces. Sometimes, it may not come at all.
*
Fighting COVID-19 is a game of whack-a-mole: when one symptom is addressed, another inevitably takes its place or appears alongside it. My father had been started on full-dose blood thinners almost from the beginning because of concerns of a pulmonary embolism (a clot in one of the large vessels feeding the lungs). They had done this based on clinical assessment. Scanning him at the time would have proven difficult given how unstable he had been. They revisited the scan—a CT angiogram of the chest—to ascertain if a pulmonary embolism was at play once he was more stable.
Surprisingly the scan was negative. Rather than have him on therapeutic levels of the blood thinners to address existing clots, they reduced his dose to prophylactic dosing to prevent future ones.
It was a Saturday morning, Hospital Day 11, somewhere in the midst of tapering Solumedrol and anakinra. I had last spoken to my father the day before on WhatsApp, and he had looked about the same. The resident called that morning to say my father had desaturated overnight to the 70s while sitting up, breathing on the non-rebreather. It was a conversation familiar to me: the solemn update to the family.
Then came the familiar segue into confirming my father’s code status. It was a conversation I had many a time, clarifying what the patient would want if their heart were to stop beating or they were to have difficulty breathing. In this case, it was clarifying with me what his position was because my father was likely not in a position to have that discussion himself.
COVID-19 was a unique situation that could not have been dreamt up, not even in the most vivid fever dreams. In any other context, I would have wanted to keep my father comfortable. I wouldn’t have wanted to impose undue interventions which would have only prolonged his suffering. This, however, was an unknown entity whose nature was just being understood. My father had already indicated that he wanted to do everything possible short of intubation, only turning to it if there was no other option.
So I confirmed that he was a full code. However, should the matter of elective intubation come up, I wanted to be notified.
Not long after, I received a call from a research nurse. There was a new clinical trial that had been opened for the use of convalescent plasma. This referred to plasma—the golden liquid portion of blood after it was spun down—taken from individuals recently recovered from an illness; in this case, COVID-19. The plasma would contain antibodies, namely those to the SARS-CoV2 that would have been synthesized by individuals who had been exposed and eventually got better. This had been used in the past, though was not something that was readily employed these days. The science was reasonable, the data—though scarce—was promising. I would have given consent right then, though I had to talk to family first. After discussing it with my brother and mother, I gave the go-ahead.
On Monday evening he was transfused with 1 unit of convalescent plasma. There appeared to be the slightest whispers of improvement at first. Though prone, he was able to more reliably maintain his oxygen saturation in at least the low 90s, sometimes even on his side, though with desaturations into the 70s and 80s when kept momentarily upright on his back and the mask off to attempt consuming something, even Ensure.
Over the course of the week those episodes of desaturation appeared to be reducing. I went back to work in two days. He would text in the morning, and at times during the day, to let me and my brother know he was doing okay. At times, flashes of his characteristic humor would come through.
On Sunday morning, Hospital Day 19, he was at his best. He was on his side, saturating in the low 90s, and had not desaturated yet even when attempting to have sips of Ensure. I texted my brother from work to let him know.
I was in the middle of updating a family member of one of my own patients when I saw the familiar number of his hospital flash across the screen. “I’ll call them back in a bit,” I thought, “it’s probably the resident giving his update.”
When the number flashed again not even a millisecond later, I froze.
I gently asked the family member to hold the line as I stumbled out the door with my own phone in hand.
“Your dad suddenly desaturated into the 80s prone, on a non-rebreather,” I remember the resident saying. “We’re monitoring him for the next 30 minutes but we may have to intubate.”
I remember asking him if maybe he could have been anxious, maybe that’s why he was tachycardic, maybe that’s why he desaturated.
Would I believe these in a normal situation? Not likely. In this situation as well, it was not likely that anxiety was as much at play as something else more tangible.
“What about a pulmonary embolism?” I asked.
But the CT angiogram of his chest had been negative not too long ago. He was on prophylactic medication for DVTs.
I remember telling him okay, but to call me in 30 minutes.
I went back into our team room, telling the family member the other updates on their loved one, and ended the conversation.
“I have to go,” I said to my senior in a voice that didn’t feel like my own. “My father is not doing well.”
My work was done, and off I went. I remember calling my brother when I got to the parking garage. I sat in my car, shaking as I relayed the updates in that clenched voice that had set in after speaking to the resident earlier. He had just gotten a call from the same resident as well. We discussed the details, and I told him I would call later.
It is a miracle I did not crash as I drove home. Luckily home was a seven minute drive from the hospital.
I wonder how much they got to learn about my father, who he was beyond the patient in the hospital gown now tethered to a ventilator.
The phone rang soon after.
“We waited to see if he would improve, but he continues to remain in the 80s and belly-breathing. We’re going to have to intubate.”
I paused.
Intubated patients are an inevitability in a hospital setting. I’ve taken care of many myself. I’ve seen intubations. We try our best to keep them comfortable, but it is a jarring procedure. The patient is first sedated and paralyzed to relax them and to allow for easier maneuvering. The patient’s mouth is opened and a specialized blade is inserted into the throat to move the tongue out of the way in order to find the vocal cords. Once the vocal cords are visualized, a plastic tube is inserted in between them to ensure that it tracks into the trachea. The plastic tube is advanced and should ideally sit right above where the trachea splits into two large branches: one for each lung. The patient is bagged, which is to say, breaths are delivered by a bag hand-pumped by one of the team members until they can be connected to a ventilator. Once connected and the tube’s position confirmed by x-ray, the ventilator takes over the work of breathing according to the settings that are programmed.
“Okay, but can you put me on speakerphone so I can talk to him?”
“Sure, I’m calling from a landline, but let me try from another phone.”
They called back a few seconds later from a cell phone. The chaos was apparent, as things and people were shuffled in the background.
“I’ve got your dad on. If there’s anything he can’t hear I’ll relay it, and vice versa.”
I can’t remember exactly what I said. What I do remember is that I tried to set him at ease by telling him that he would be made comfortable. I told him I loved him.
He said “Thank you, Kanna,” using a nickname he has used for me since I was born.
I stood in my bedroom, feeling helpless. Outside of the room, a couple looking to rent our apartment moved through the house with my husband as he showed them this room and that. After they left, my husband came into our room. In one swift motion he gathered me in his arms as I wailed.
*
The intubation was successful, the resident called later to tell me. I thanked him, particularly for his daily updates. He told me that it was a pleasure, and that both my father and I were very pleasant to work with. It was comforting to hear that.
My father was shifted to a surgical ICU that had been converted to one of several COVID-only ICUs. I secretly hoped he would be out of the ICU soon, and this resident (if he was on service at that point) would continue his care.
A bond between a patient and provider is a unique relationship. In the mornings, there are times where the prospect of getting to spend a few minutes with my patients make the drudgery that much easier to traverse. Many bring with them a warmth and sense of humor that cuts through an otherwise serious situation. There have also been times when patients have expressed that despite the circumstances, they enjoyed having me as their physician. Perhaps my father felt similarly about this resident. I know I did.
I wonder how much they got to learn about my father, who he was beyond the patient in the hospital gown now tethered to a ventilator. His entire life had been spent trying to protect people from number manipulation. He’d worked for New York State for over three decades, and for a time was assistant director for the Bureau of Medicaid Audit under the auspices of the Office of the Medicaid Inspector General. In this role he oversaw large audits of local hospitals and clinics, retrieving upwards of millions of dollars in cases of Medicaid fraud. He had a keen eye for detail, something that served him well in this role. This was during the time when the current governor Andrew Cuomo was the state attorney general. Indirectly, my father did have interactions with his office. It was interesting that now, Governor Cuomo was overseeing policy that directly affected my father’s life. My father retired from the state in the late 2000s, pursuing similar opportunities in the private sector. It was hard to say if he ever would retire. He was always on the move.
*
Now that he was stable, the focus shifted to why my father suddenly decompensated.
When patients have underlying disease, lung or otherwise, it takes care to keep everything functioning smoothly. An insult can tip the scales off balance. With my father, the primary contenders were a clot versus an infection. For the former, given how easily patients with COVID-19 can form clots, a pulmonary embolism remained a consideration, as well as a heart attack. An infection, particularly a lung infection such as pneumonia, could be a hard hit to an already weakened respiratory system.
The pulmonary artery and its branches—which most often gets affected in this case—originates from the right ventricle of the heart, the muscular chamber at the bottom of the heart that pumps blood into the lungs for oxygenation. When pressure builds up, strain can become apparent in the right ventricle as it struggles against the increase. This was not the case for my father. An ultrasound of the heart, or an echocardiogram (ECHO) was performed at bedside. While it’s useful not only to determine if there were any structural cardiac issues, it’s a useful proxy to check for a pulmonary embolism. When there is a clot in the lungs, this can cause pressure buildup behind the blockage.
Still, updates became harder to come by. With multiple critically ill patients and a limited number of residents, the hospital staff was stretched thin. My mother, being in India, was 9.5 hours ahead. Sleep was in short supply for her as it was for the rest of us. Even if we got our updates in the evening our time, she would be awake when we would relay them to her.
Soon after intubation his blood pressure began to drop, requiring three pressure-augmenting medications, or vasopressors. He had a larger intravenous line inserted into the one of the major veins in his neck, the internal jugular vein. A urinary catheter was inserted to allow for closer monitoring of urine output to determine fluid balance. His heart rate, which should have been south of 100 beats per minute, was in the 150s. Even with a one-time dose of an antiarrhythmic agent, it only slowed to the 140s.
His pressures would hover in the 90s/50s, though his oxygenation remained normal.
*
A Tuesday night, his twenty-first hospital day, the conversation changed.
The update came as the others had, with numbers. They spoke for themselves.
He had a fever of 100.6 F.
Pressures were in the 80s/50s despite three vasopressors. Oxygen levels were dropping to the upper 70s despite proning and adjusting his ventilator settings.
“You should come home,” I was told.
There, as with my own institution, visitors were not allowed to come. One of the big exceptions was at the end of life.
For an hour, my husband held my shaking, screaming body. He told me it would be okay. He told me it was normal to cry. He reminded me that it wasn’t a sign of weakness.
I didn’t want my father to die. It was not possible.
I had to call my brother.
He was stoic. I could tell that it was a hastily made front. Behind the large walls he had erected for himself, he was terrified.
“You need to go be with him,” I said, “There is no way I can make it there right now.”
He paused. “I don’t know if I can see him like that.”
“He can’t be alone.”
He called a cab for himself, knowing he was in no condition to drive.
Still stuck in Cleveland, I called my mother until she picked up. It had to have been the middle of the morning. I relayed where things stood with Dad, and how stark everything seemed.
She had no way of coming back, with lockdown still in effect until May 3. “Amme (oh mother),” she sighed, as she often did when the world became overwhelming. “Maybe God is making His will known.”
There was no feasible recourse to find a way around the lockdown. When I had last spoken to her, she said she would try calling Emirates to inquire about flights. I imagine that it was in vain.
Dad was on two antibiotics, which would do well to cover most potential bacteria that may have been causing an infection. There was a third organism that could have been responsible, and could have benefited from another antibiotic being added just in case. This was part of the advice I gathered from consulting with close friends of mine who are on the frontlines caring for untold numbers of COVID-19 patients.
It was around midnight. I reached out to the resident taking care of my father to pass on these suggestions. To be honest, short of broadening his antibiotics further, I don’t know what else was put into play. All I know was that my brother made it there around that time and sat by my father’s side in full PPE. I, hundreds of miles away in Cleveland, wept and waited. Somehow I drifted into dreamless sleep.
At 5 a.m., my brother called me. He sounded animated, spurred along by what could have only been adrenaline. He had been playing some of my father’s south Indian devotional songs, and telling him how much we all loved him. I’d like to think this, along with the interventions made earlier, may have nudged the vitals that blared across the monitor into more normal ranges.
My brother was on his way home, where he would try to get some rest.
*
My father was stable for the next few days. The opiate sedatives had the added side-effect of slowing his bowels down until they were no longer moving, known as an ileus. Things started to move in the other direction, with the contents of his stomach backing up and coming out of the orogastric tube. This had been placed through his mouth directly into his stomach earlier to provide nutrition through tube feeds. His feeds were stopped and his bowels given a chance to rest. His liver, literally shocked from the very low pressures of that night, reacted petulantly like someone scorned. Liver enzymes increased into the thousands, though the next few days saw a slow return to normal.
After a few days, the nurses was able to video call me so I could see my father. I have worked with a number of intubated patients. Most were so heavily sedated that getting a neurological exam meant administering painful stimulation to assess their functioning. With these patients, I found myself apologizing a great deal, unsure whether or not they could hear me. I would still talk to them, tell them what I was doing. I would do my best to treat them as I would treat them when they were awake.
Now, I found myself wishing for a hug often, even if it meant donning layers of PPE.
Seeing my dad in a similar state was an entirely different matter. His head was leaning to one side, propped up by pillows, a band securing the endotracheal tube sticking out of his mouth, his chest rising and falling in time with the ventilator. Even with all the patients in similar positions whom I have treated, it was nonetheless jarring to see him like this, so dependent on the machine. My brother would later say he had hoped he could protect me from seeing him like that.
Yet he was still my father, tubes or not.
Dad had never really been much of a hugger. The running gag was that if either my brother or I were to achieve something significant, we may get a firm handshake. When I graduated from medical school, though, he hugged me. I reacted with faux surprise but was secretly thrilled. Now, I found myself wishing for a hug often, even if it meant donning layers of PPE.
The following days were marked by slow improvement. His blood gases returned to normal acid-base balance, not overly acidic as it had been. His ventilator settings, too, started to ease. There was a day where they had been able to wean down all of his intravenous sedating medications to just those being delivered by his feeding tube.
It was during these days that I felt most balanced, almost hopeful. Work, once again, felt normal. There was the usual ebb and flow, the difficult patients, the easy-to-work-with ones. There was a smoothness to the day, the transition from work to home and home back to work didn’t feel weighed down and onerous. My conversations with my brother became more about banter than about fear.
*
Then, a few days later, Dad’s temperature rose a few times, skirting the edge of a defined fever of 100.3 F. Sometimes, it would drop low to the lower 90s. Concerned about an infection, the team sent off cultures and planned to exchange the large intravenous line in his neck, which had been in there for about ten days. It seemed to be a smooth plan.
Later one evening, I got a call from one of the physician assistants. They were unable to put a new line in the original location because of a presumed clot. In trying to put in a line in an alternate location—this time the right subclavian vein—they had inadvertently caused a pneumothorax, essentially collapsing part of his lung. The subclavian vein sits just behind the clavicle and overlies the upper lobe of the lung. A line here is typically easier to place because it does not rely as heavily on ultrasound guidance and can be placed using anatomical landmarks. Imagine attempting to find buried treasure with a metal detector, compared to a treasure chest lying just beneath the surface covered with a thin layer of sod and grass. The challenge was the real estate involved. Being careless or overly aggressive could cause the guide wire to go through the vessel into the lung.
Again, he was proned as his oxygen levels were plummeting. Intravenous sedation was restarted and his vasopressors were increased.
Just like that, he was ten steps back from where he had been.
He had a chest tube placed to remove the air compressing his lung from the outside in. Eventually the pneumothorax stabilized, and they were able to remove the chest tube a few days later.
In the background, his kidneys—which had been working well—started to falter. His creatinine levels—a proxy for kidney status—rose. It was a worrying sign. Along with the rise in creatinine came the fall in his glomerular filtration rate, a measure of filtration. His urine output never stopped entirely, but with all his drips and all the fluids he was getting, it was nowhere near matching his needs for fluid balance.
I had an oral competency exam scheduled on the day that the nephrology fellow at my father’s hospital called me. He had called to relay my father’s worsening renal function, and was asking for consent for placing a dialysis catheter and starting continuous renal replacement therapy. It wasn’t quite dialysis; it was pegged as gentler and done over a longer time frame. I gave the go-ahead, with the condition that the line be placed in his groin given what had happened with the earlier line placement near his lung. In the back of my head, I was grappling with the possibility that he may require long-term dialysis. Assuming he came out of this relatively intact save for his kidneys, this would be sentencing him to three-times-per-week dialysis sessions. Missing one could greatly worsen his overall state of health, making this regimen necessary, and even mandatory, for any chance of living, let alone living well by some definition.
I remember going to my oral exam, sitting in front of my program director and associate program director. We went over four cases, and each attending asked different questions about management. My mind was empty, grasping at words and trying—often in vain—to string them together into coherent, English sentences. I could feel myself struggling, searching dark corners of my mind for answers that would normally flow out easily. My phone was laying on the far end of the desk; every time there was a notification, I could feel myself jump. The eyes on me looked concerned. In the end, everything seemed to go okay.
*
Each day became influenced by the update I would get. If he appeared stable by the time I got my afternoon update, I would give myself permission to exhale.
Then there were the days like the one two days after starting CVVH, a form of continuous renal replacement therapy.
By the end of May, he had been shifted to a medical ICU. The makeshift ICU where he had been was being dissolved in light of the surge starting to abate. One morning, I got a phone call from my brother, attempting to conference in the nurse practitioner now taking care of my father.
“They’re saying he has fibrosis,” he said as the call went dead.
Fibrosis was always something suspected based on the numbers, but never given a name.
I had wrapped up my work for the day, so I managed to hop back on the call. My father’s attending was on, alongside the NP. He walked about poor prognosis, of the likelihood that he would remain on the ventilator long-term, tracheostomy or not. He would probably need heavy sedation to stay in sync with the vent.
Would that be an existence my father would have wanted?
I left the call in a haze. One of my seniors, who happened to be walking by, asked how my father was doing.
I broke down.
At various points during my residency, I have been floored by the kindness of my co-residents and attendings. In a time where many residency programs were facing scrutiny for callous practices that drove their residents to the brink, I have considered myself lucky.
This was one such time.
I was supposed to be on call that evening. My senior told me to let one of our chiefs know and ask for coverage. I did the former but was hesitant to do the latter. Earlier in the week, one of my co-residents—seeing how distressed I was—covered my call and refused to let me stay to see out the rest of the evening. As a resident I felt that I had to perform my duty no matter what was going on. I had to do this call because it was my job, and I couldn’t keep stepping back and having my colleagues cover for me.
Lost in the midst of this was the notion that what I was experiencing, as a physician in a pandemic, was unprecedented in its enormity and its gravity. I had forgotten that I needed to step back and allow myself to feel and process. In a normal work day, I would give myself those brief moments, the ones that followed a devastating diagnosis or the withdrawal of care on a patient for whom I had cared for days if not weeks. I needed these moments of pause to be sane, to appreciate the gravity of the work I was doing.
This was my father, though, and I simply couldn’t take a breather and head back into the battle.
Time and again, my seniors took over. Finally, they called our chief themselves, ensuring that coverage was set up so that I could go home.
“Sometimes you need to allow yourself time to process these things.”
“You have to be easy on yourself.”
These were the refrains that bade me well as I left.
*
Palliative care was consulted. A common misconception is that palliative care is synonymous with end-of-life scenarios. While palliative care providers are integral in helping patients and families at the end of life, they can become a partner for patients managing chronic illness and a litany of symptoms. In neurology, we come to work closely alongside palliative care not only for those patients in terminal situations, but those who face a long road to recovery.
The palliative care physician I spoke to sounded kind. I can only imagine it because all I had to work with was the voice on the other end. Each syllable she pronounced was softened, perhaps by empathy, perhaps by the onslaught of COVID patients facing dire stakes. Each day, a new day of shepherding loved ones through unthinkable scenarios in even more unthinkable circumstances.
Every day I ask myself, have I done right by those patients?
That day, the discussion centered around the possibility of a tracheostomy for my father. His lungs, being what they were, would require a long road to recovery. Typically patients who were intubated and on the ventilator would undergo a tracheostomy—a procedure whereby the tube in their throats was instead placed through an incision made in their trachea—if they needed ventilator support beyond two weeks.
The tracheostomy was a more permanent solution, though could also be readily reversed if they recovered enough. In the age of COVID this logic had been somewhat turned on its head. As one attending put it, it did not make sense to put in a tracheostomy in someone who would die the next week. More time was spent intubated on the ventilator, avoiding tracheostomies except in particular settings, and more effort was put toward avoiding intubation in the first place.
I was not against the idea of a tracheostomy. However, my experience with tracheostomies had been with those patients who were so neurologically devastated that they could not breathe despite healthy lungs. These were the ones sentenced to a lifetime of ventilator dependence, more often than not. This was not necessarily the path patients with poor lungs and good brains took. We decided to hold a discussion at a later time, with my brother, my father’s treating team, and social work.
Then the attending called. She painted a grim picture, the third or fourth to have been painted over the course of his stay.
End-stage fibrosis, she said.
He would not be a candidate for a tracheostomy.
I asked for the rest of his numbers and arranged them by system.
Lost in the data were the feelings I was supposed to be having.
We speculated about infection being a cause, having gone through two setbacks prior to this with infection as the likely culprit. Maybe they should start antibiotics, we thought.
I would let them know in the morning.
Around 1 a.m. my phone rang.
It was the physician assistant covering overnight, saying his pressor needs were increasing and it was looking like the end. She already had spoken to my brother and suggested he come in.
I called my brother. He sounded shaken, though perhaps less so than the first time he had been asked to come in almost a month back. The process, in a way, felt familiar to him.
Call for a taxi, I said.
Get to the hospital.
Don PPE.
Sit by Dad’s bedside.
The attending called a little while later. He was trying his best to be sympathetic, though the need to deliver facts was edging past it by a hair.
I talked about antibiotics, about stress-dose steroids. I asked about cultures. The calmness in my voice frightened me. He agreed with my suggestions, to a point.
“He is on his deathbed,” he said, bluntly.
The term deathbed so often conjures up images of the infirm padded by mountains of soft duvets and pillows, family surrounding them at bedside.
Thanks to my brother’s phone, that is not what I saw. There my father lay, with innumerable tubes and drips. The only sounds, save for the team’s discussions at bedside, would be the beeping of his monitors.
Now, it was joined by my brother’s voice, as well as mine via speakerphone.
I spoke to my father briefly. What I said was between me and him. I thought about those intubated and sedated patients whose family members called in, trying to convey their love when their messages may or may not be received.
My brother was eventually ushered out to the waiting room. We talked about what he saw. When we had spoken the last time he had to go to the hospital, he had been traumatized. Now, the second time around, I could hear in his voice that he was resigned.
“If you had seen him, I’m not sure you would want him to go through much more.”
I agreed.
He eventually got a cab home, where he collapsed in a heap. His phone was switched off.
I tried my best to crawl back into bed, knowing sleep would likely elude me for the rest of the night.
*
I didn’t know how this story would end. When this entire saga started, I imagined he would need a week, maybe two, then he’d be better, right? He may have gotten away with no supplemental oxygen at all, maybe he would have needed a little initially.
Perhaps we would sit together and laugh about it, in all its raw horror. Laughter always had a way of cutting the tension, allowing us to breathe when breathing became hard.
I would chide him for missteps he made along the way, landing him in this mess.
He would probably roll his eyes and jokingly dismiss me.
“Move it along,” he would say, patting me on the back.
*
At 7:15 the next morning, the phone rang. The familiar hospital name flashed across the screen.
It was too early for a daily update.
The NP taking over for the day was on the other end.
“I’m so sorry to tell you, your father passed away around five minutes ago.”
It was Hospital Day 44.
Whatever air I had in my lungs evaporated.
“Did you call my brother?”
“I tried, but his phone was off.”
“I’ll try as well, but if you don’t mind trying again I would appreciate it.”
I thanked her.
“I’m so sorry, I’m so sorry,” she continued to say. “Take care.”
I hung up.
How many sorry’s are appropriate when one of your parents passes away under tragic circumstances?
How does one respond?
Do you thank them?
Do you let their voice fade as you stay silent?
I have pronounced several patients over the course of my residency. I get paged by the nurse to call the time of death.
Sometimes the deceased is surrounded by family to the point that the air in the room grows thin.
Sometimes they lie alone in bed, with nothing but the sound of the television in the background to keep them company.
They are sallow and waxy, no longer with color in their cheeks, their heart having already given up on its task. They have no breath sounds. Their pupils are fixed, dilated, sitting in mid-gaze. They stare outwards, focusing on nothing and everything all at once.
I call the time of death. I whisper my sorry’s to the family gathered at the bedside.
If they are alone, I whisper my apologies to the deceased.
Who pronounced my father? Did they whisper their kindnesses to him as the last bit of breath left his scarred lungs?
I’m not sure exactly what clawed its way out of me, full of urgency and haste. But it screamed and howled, the cries punctuated by monosyllabic entreaties to no one in particular.
I realized it was me.
For ten minutes this continued, sobs interrupted by great, deep wheezes.
I wanted to throw up.
I wanted to dissipate.
I found my voice eventually, cloaked in tears.
I had to call my brother. His phone remained off.
I called my mother. It was around 5 p.m. in India. She picked up the second time I tried.
“What happened?” she asked.
I relayed what I could before I felt the tears overtake again. She was silent for a while.
First came the sarcasm, railing against God, saying how great He was for taking him away. Then she relented.
“Maybe He didn’t want him to suffer anymore.”
I am not religious, but I agreed.
No flights were available from India to the United States until June 1. My mother had missed her husband’s illness, she had been kept away on his death bed, and would probably now miss his cremation.
At last, I got my brother on the phone not too long after. I could feel his existence shatter through the phone.
The day was a haze, a mess of crying and determining flight plans.
There was more work to be done.
*
I landed the day after my father passed away. On my flight, my seatmate refused to wear a mask because it infringed on his rights. He relented when I took out my phone, thinking I was going to do something (truth be told, I was going to put it on airplane mode). He did ask a flight attendant if he could sit in the back because I was asking him to wear a mask. She reminded him that wearing a mask on board was mandatory.
My father was lying in a morgue, dead of COVID-19, and my seatmate could not be bothered to wear a mask because of some perceived slight against his freedom.
I did not have the emotional wherewithal at the time to say much else to him.
The ensuing days were marked by arrangements to transfer my father’s remains to a funeral home, set up a date for cremation, and get his belongings. I was a robot, focused only on the tasks in front of me.
One of my friends who worked as a physician in the hospital where my father was hospitalized held onto my father’s belongings until I could get there. It was a torrential downpour the day I came. I carried with me what I can only describe as an absurdly large bouquet. I didn’t know how else to thank him.
“I can’t even hug you,” I bemoaned as he handed me a bag with my father’s valuables.
We chatted briefly, neither of us happy that we were meeting again under these circumstances. I said my goodbyes and thank you’s before leaving. The rain, only then, seemed to let up.
Perhaps the cruelest aspect of COVID-19 was how it deprived us of our ability to mourn like human beings.My father was cremated on the following Tuesday. Only a few family members accompanied his remains, in accordance with what we think his wishes would have been. He was a famously private person; it felt appropriate to keep the group small.
Stripped from the day were the usual Hindu last rites that shepherd the dead to their next step. With COVID-19, such rituals—with their inherently communal nature—were not possible.
It was an hour and a half drive on an unimaginably beautiful day to the crematorium. The sun shone unhindered and the clouds stayed away, choosing instead to hug the horizon. My father’s name was Ravi, which in Sanskrit means “sun.” It was just as well that the sun would be on full display on the day of his cremation.
I’ve seen funeral processions on the highway, driving slowly and solemnly. Ours, however, moved at breakneck speed. Knowing my father and how he was constantly in a rush to get somewhere and do something, it seemed only fitting.
We were not allowed to enter the crematorium nor push the button to start the furnace. We were not allowed within 100 yards due to COVID-19. Instead, we drove around the cemetery and parked, waiting for a call to say they had started.
When they called, the well-erected barriers I had created for myself were no longer able to withstand what it had struggled to hold back. Perhaps the cruelest aspect of COVID-19 was how it deprived us of our ability to mourn like human beings. Notably missing was the human touch: the hugs, the arm around the shoulder, and other expressions of grief. Instead, I stood heaving while my family made a small circle around me. Eventually my aunt put her hand on my back. I found my gaze lingering on each of them, each also left behind.
We wandered to a nearby gazebo where some of us sat inside, maintaining social distancing. The others scattered around the periphery, some splitting off to wander among the headstones. We talked about my father, recounted old stories and memories. His older sister Facetimed from India but was unable to say much, too overcome.
About half an hour later, we got up to leave. At that moment, out of sight from where we stood, someone let go of a heart-shaped balloon. Up it rose, standing out against the brilliant blue of the sky. I usually am not one to try to stitch narratives from perceived symbols, but it was hard not to find comfort in that sight.
*
I write this now at home in Cleveland. My husband and I moved to a new place three days after my father’s cremation. It has provided a measure of joy and distraction amid the moments where grief steals my breath and leaves me stunned.
At the end of the day, I just miss my father.
He enjoyed being a father because it gave him an excuse to be a child again. Even until the end, I imagine he was still watching Looney Tunes reruns if they were playing. His jokes would seemingly come out of nowhere. He would have everyone doubled over laughing while he sat in a corner, no more than a smirk to belie anything had just transpired.
Had it been any other time, I would have sent him photos of the new place. I would have sent him an email or text about the end of my second year of residency (he was never much for phone calls). I would have maybe still called to wish him a Happy Father’s Day.
I may have gotten a congratulatory message about the house and wrapping up my second year. Maybe I would have gotten a joke about a firm handshake, or perhaps even a hug.
My father was whip smart, irreverent, and politically incorrect. He could speak two languages and curse in three: English, Malayalam, and Yiddish (a perk of living over four decades in New York). He sang the praises of Malayalam and Malayalee culture and food at the expense of all others, and in that way reminded me of Nia Vardalos’ father in My Big Fat Greek Wedding.
He was a child of Palakkad, India. His food choices were firmly rooted in the cooking of his mother, who passed away six years prior to him. Yet he was a product of life in New York. He was a huge Yankees fan, never veering into blind fandom, knowing when to criticize the organization (which was often the case in recent years). It was this fandom that was passed on to his children. Even now, in the heart of Indians territory, I cheer for the Yankees.
He would read anything, but particularly the New York Times, the New Yorker, the Atlantic, among others, with zeal. He would send articles to my brother and me, as well as songs he would come across through his readings, testing the limits of my free Gmail account. Malayalam songs and Hindu devotionals were always in the lead, but ones from such artists as Ali Farka Toure, Harry Chapin, Jagjit Singh, the Beatles, and Leo Sayer among others would find their way into my inbox as well.
I am a neurologist in large part because of him. I had participated in and won a competition called the Brain Bee 17 years ago as a high school student. I remember him taking the time to quiz me and send me other articles on the brain to stoke my interest. After winning, I remember my mother and my brother losing their minds with excitement. My father, however, just smiled and gave me a hug.
He was also imperfect, as all humans tend to be. He made his mistakes with his family and friends. We had our disagreements, and they burned deep holes in us both. By the end, though, we had started the process of filling them in.
He was ours, and always will be ours.
*
As I sit here now, I think about the nurse practitioner who called me to tell me of his passing.
I wonder about how we think of death once the heart has stopped, the remains moved, and the next patient brought into their bed after it had been rid of any reminder of the former occupant’s existence.
Does the NP think about him? Do any of the attendings or residents?
We carry with us the memories of those for whom we cared who did not make it out of the hospital alive. Many of us remember those moments, those heart-wrenching conversations with families, the steady or precipitous decline of their loved ones.
Every day I ask myself, have I done right by those patients?
Did I treat them with dignity? Did I treat them as they would have wanted to be treated?
Now I also must ask, did I do right by my father?
Or, will I do right by my father?
He would have wanted me to be meticulous, if I were to tell his story. He would want me to not leave any detail forgotten, any possibility unexplored. He would have wanted me to be compassionate, remembering that my patients were vibrant individuals. These were people who, like all people, touch so many others with their presence, whether they realize it or not.
He would want them to be treated justly.
The sound of keystrokes is comforting. It reminds me of my father, writing whatever came to mind, searching for articles, sending emails. He wasn’t one for talking, but the steady click-click-click was always a reminder he was there.
Now that is gone.
But I continue to type.
Click-click-click.
