Published 06.11.20
MY COVID: LIFE AFTER MIRACLES
My symptoms started on April 1, 2020. In mid-to-late March of 2020, Covid was becoming a real concern. The suggestion was that we shouldn’t gather in groups of more than six. Masks were not yet on our radar. Gloves were suggested, and the general consensus was that we shouldn’t touch our faces. People who were living alone and demonstrating flu-like symptoms were to assume they had the Covid virus, stay home, and let the virus run it’s course.
Health clubs and exercise studios were forced to close on March 20th. I was using the gym and attending exercise classes until that time. Fitness clubs, restaurants, clothing and grocery stores, and hair and nail salons were taking no precautions to speak of, so I could have contracted the virus while enjoying any of those activities. Or not
My first symptom was a fever, which started as low-grade then vacillated over the course of the next 7 days between 101 and 103 degrees. I became suspicious that it was Covid, although I knew no one else who was Covid-positive . Per the recommended protocol, I self-quarantined. I continued to experience high fevers, loss of appetite, aching joints and fatigue. I was somehow not fazed by having the virus; I kind of assumed everyone was having it!
I heard that Covid could cause you to lose your senses of smell and taste. I placed a bottle of bleach and a bottle of nail polish next to my bed and sniffed them every few hours. When I could no longer smell either, I was dead sure it was Covid-19.
My memory of that feverish week alone is spotty. I had no interest in food, high fevers, extreme hot and cold spells, muscle aches, and was mourning the loss of a couple coveted senses. Around Day 7, there was a distinct shift in my condition. A cough emerged. It was a deep, unfamiliar and frightening cough.
On Day 8, I called my primary care physician’s office and spoke with a nurse who had apparently been charged with triaging Covid calls. I told her I had been sick with high fevers, had lost my senses of smell and taste, and was unable to stop coughing. She said it sounded like I was possibly experiencing minor symptoms of the Coronavirus. (This was in early April, when so little was known about the progression of the illness.) She recommended I drive to a testing facility 5 or 6 miles from my home, and I told her I did not think I could drive. She recommended a transport service which would pick me up and take me to the nearest testing facility, but the lead time was about 48 hours. The test results would be ready in about 5 days, she said, but since this was at a time when the number of available Covid tests were unable to meet the high demand, there might be no test at all. I’m pretty sure I said “OK, thanks” and went back to the business of lung wrestling.
The triage nurse must have re-visited her decision to place me in the “minor symptoms” category. My PCP, (removed for privacy reasons), called me later that day. I don’t remember the conversation, except the part where she said “Call an ambulance immediately.” I had established care with (removed for privacy reasons) only six months earlier. If we’re counting miracles, that would be Miracle Number 1.
I remember getting into an Ambulance. The medic asked me which hospital I preferred. I had never been to a hospital so I named the first one I could think of: (removed for privacy reasons). That decision would be Miracle Number 2. (My life came so close to the edge; I’m convinced that if any decision or event (or its timing) were infinitesimally altered, my illness would have had an entirely different outcome.)
I remember sitting on an exam table and coughing violently. I remember a nasal swab followed by a seemingly immediate confirmation that I tested positive for Covid. I had an in-bed chest x-ray, and I was admitted to the hospital with double pneumonia. This was my only hospital admission in 60 years.
The details of the next couple days are foggy, at best. I distinctly remember seeing large geometrical figures in primary colors on the walls and ceiling of the hospital room. I knew I was hallucinating, but I couldn’t make it stop. Shortly after I told my nurse about the dancing triangles, a psychiatrist came to visit. I remember FaceTiming with my sister and telling her the nurses and doctors were trying to commit me to the Psych Ward and that I intended to call multiple radio stations to report the conspiracy. Several of my friends later showed me my largely incoherent texts apparently aimed at solidifying my conspiracy theory. (Incidentally, I did not call the radio stations about the conspiracy. But afterwards, I did contact Nina Feldman at WHYY, who was exploring the subject of the wide-reaching effects of the Coronavirus. She wrote a wonderful piece about my Covid experience and the lingering psychological and neurological after-effects of the Coronavirus, which are still coming to light. Her article can be found at: https://whyy.org/articles/haunted-by-sickness-the-enduring-trauma-of-covid-19/.)
Around the same time I was hallucinating big colorful shapes, I had another hallucination: I was running down the hallway to escape from the hospital, punched a security guard in the face, pivoted to flee in the opposite direction, and fell hard onto the floor. The hallucination was so vivid, I was convinced it had actually happened. I was mortified when I later found the event well-documented in my medical chart.
The following day, after having been in the hospital for four days, I stopped breathing (or close to it). I vaguely remember consenting to some recommended something or other and being frenetically wheeled somewhere (I presume to the ICU) on a gurney. I was wearing an oxygen mask. I recall a pretty blonde nurse leaning over me, asking if I have a DNR, and me lifting my mask and asking, “Am I going to die?” She sang a not-too-convincing “no-ooooh” and asked me again about the DNR. I said yes, I have a DNR. The last thing I remember before being brought back to a regular hospital room six days later was that I really don’t know what a DNR is.
Of course, I have no idea what happened during my time in the ICU. This was the beginning of the “no visitors” policy, which I can only imagine was agonizing for my sister, (removed for privacy reasons), who knew there was a very good chance I would die. With the hospital off-limits, my sister set up a war room in her kitchen, diligently tracked every detail of my turns for the better and my turns for the worse, was in constant contact with the ICU nurses and doctors, and kept our friends and family informed of my progress (and lack thereof).
My sister’s perspective:
My sister is incredibly youthful, healthy and strong, so when she became fevered and exhibited other flu-like symptoms, I right away feared Covid, but I also believed her journey through the virus would be short-lived. When her symptoms worsened, I was relieved that her PCP sent her to the hospital. Still, I NEVER entertained the thought that her progress would be anything but towards health.
During the first few days of her hospitalization, we spoke on the phone or FaceTimed often. She seemed disoriented, which I assumed to be from fever and solitude. She began to hallucinate and became paranoid. It did not occur to me that her hallucinations and fears were due to the ravaging effects of Covid (this information had not yet emerged). When I became unable to reach her by cell phone, I called the hospital; this is where my nightmare truly began. I was told that Jacqui’s left lung had collapsed and that she had been put on a ventilator. I was asked if I would want her to be resuscitated and if she had a DNR. I believed, in that moment, that I would lose my one and only sister. I couldn’t be with her, I couldn’t hold her hand. I couldn’t tell her that she would be all right, that she should hold on or let go or tell her that I loved her and that I was there for her. She was all alone in this nightmare and for the first time in my life as her older sister I could not be there for her. All I could do was attach a virtual umbilical cord between me and the doctors and nurses who courageously and lovingly saved her life.
My ass was getting kicked by a novel virus about which so little was known. My brother-in-law, scoured the Covid-related literature, medical opinions, random theories and conjectures. He found that, factoring in my delay in treatment, double pneumonia, hallucinations, collapsed lung, and my six day ride on a ventilator, my chance of survival hovered in the area of 10%.
One of my best friends, (removed for privacy reasons), is an ER physician at the Hospital (removed for privacy reasons). She’s still mad at me for not calling her during my seven-day pre-hospital fever marathon. Nonetheless, she agreed to share her experience:
Best friend’s perspective:
I too received one of Jacqui’s confusing text soliloquies containing bizarre rants like “get me out of here.” It was completely unlike her. The texts arrived around 3 a.m., when she knew I’d be working. I thought maybe she was reaching out to share her support for me as a health care worker the throes of a pandemic. The texts were unsettling.
When I called her in the morning, she could tell me pieces of what led her to the hospital, but she was a little incoherent. She wasn’t able to tell me how many days she had been in the hospital or any details of her condition. She told me the “bad nurse was coming,” and that she had to get off the phone. She promised to call me back but she didn’t. She didn’t answer her cell phone later that night.
The next morning, I called her. She answered but a nurse quickly came on the line and told me it would be better if Jacqui and I spoke a bit later. The nurse gave me her direct number. Before I hung up, I could hear that Jacqui was very upset and was resisting the nurse’s guidance, but the nurse sounded like she was handling the situation appropriately.
Jacqui seemed paranoid and delusional. How sick was she? Thirty minutes later, I called the nurse and she told me that Jacqui was, in fact, hallucinating and that they were waiting for a psychiatric consultation. I spoke with Jacqui later that night, and it was clear she had been sedated but otherwise seemed okay.
The next morning, I called the hospital and was advised that Jacqui had been transferred to the ICU and was on a ventilator. I wanted to reach out to her sister, but I didn’t know how to contact her. I googled her name, found her professional website, and requested an appointment with her as a new patient.
Her sister responded and we were speaking by phone a few minutes later, piecing together the chronology of the last few days. I was so worried for Jacqui and felt just terrible for her, knowing the two of them had always been so close. I shared Jacqui’s story with my whole family; she had spent the past Christmas Eve with us and had made such an impression, and they were all sending prayers and love every day. The next 6 days of daily check-ins with her sister, the doctors, nurses and my family were frantic as we saw the pandemic manifest in our beloved Jacqui, who was our age and totally fit. It didn’t make sense. It heralded lots of terror about the next several days, weeks and and months as the virus raged in nearby New York City and in Philadelphia where we live.
Amy, my closest friend, lives in Pittsburgh, 300 miles away from my home. She was receiving daily (or more) updates about my condition from my sister. Obviously, she could not communicate with me or with anyone working at the hospital.
Close friend’s perspective:
Jacqui and I speak daily, sometimes more than once a day. When she told me she had a fever, we considered the possibility it was Covid. When she lost her sense of smell, we knew she had contracted the virus. She self-quarantined because that was the protocol du jure. By the time the cough emerged, her fever was extremely high, and Jacqui and I were both concerned. Thankfully she called her PCP, who told her to immediately call 9-1-1.
When Jacqui called me from the hospital, it was quite clear she was hallucinating. She was convinced there was a conspiracy to have her committed to the psychiatric ward. The nurse ordered a psychiatric consult. While we were talking, the psychiatrist walked in. Jacqui’s last words to me were, “I’ll call you after the doctor leaves.” I went to work and checked my phone several times… no text, no call. My heart sank. I was unable to reach her. I instinctively knew she was on a ventilator.
It was another 24 hours before I heard anything. I had no information about Jacqui’s condition and no way to contact her. That silence was almost deafening.
The day before Jacqui went to the hospital, I told my prayer partners about her symptoms, and we immediately began to pray for her. As her situation deteriorated, the Lord Jesus guided our prayer time and assured us He was with her in this.
I was so grateful when her sister texted me!! She had somehow gotten my number. She told me Jacqui had been intubated. (Such mixed emotions flooded me; she’s alive, the’ve stabilized her, but how long will she be on the ventilator?)
Carolyn tirelessly kept me informed of Jacqui’s condition at every turn. I asked Carolyn to let Jacqui know that I loved her and was praying for her on their next FaceTime. She graciously said she would, and though I couldn’t tell Jacqui myself, I was so comforted that she could.
Of course, I have no idea what actually happened from just before I was intubated until after I was taken off the ventilator. But here’s what was happening in my world: By way of background, my mother died 2 ½ years before I got sick. My father died when I was very young. While I was on the ventilator, seemingly at the end of my six-day nap, my mother’s face appeared in laser-sharp clarity. My father’s image was was farther away, but I could see him and could sense his presence strongly. It was a warm, peaceful encounter. It was as if we were all floating. They simply appeared and gently pushed me away. And then I woke up (well, after a bunch of false starts trying to get off the ventilator). That would be Miracle Number 3.
The first thing I remember after the “ventilator incident” was a doctor entering my room and saying, “You are one lucky lady.” I had no idea then what he meant.
Because of my positive Covid status, I was unable to receive visitors or leave my room for three weeks. And I had already been isolated at home for one week before I even went into the hospital. The isolation makes you feel vulnerable and helpless and scared and lonely. Thank God for nurses’ visits and cell phones. One of the most powerful calls I had while I was still in the hospital was with Dr. (removed for privacy reasons), my PCP Fairy Godmother, who literally saved my life. I don’t remember the actual words we shared; I just remember the overwhelming and tearful feeling of safety and gratitude. Dr. (removed for privacy reasons) and I have had several such conversations since that initial call.
Dr. (removed for privacy reasons) perspective:
It was April, 2020 and we were now into the second month of COVID-19 hitting the United States in force, specifically in NY and NJ. Practicing primary care physicians were challenged by limited testing in the face of over 50 daily calls from patients fearful that their symptoms could be Covid. In addition to my daily load of nearly 30 patients for routine visits by either telemedicine or in person, I was remotely caring for about 20 people diagnosed with COVID-19, all of whom were calling me every 1 – 2 days and were given instructions to self-prone, perform lung capacity breathing exercises, and take Vitamin C and zinc. At night, I had been pouring over every NEJM article as soon it was published to ascertain what I could understand about the virus. As a Molecular, Cellular and Developmental Biology major from Yale University, I was starting to see the difficulty of this disease: pre-symptomatic patients could spread this disease through viral shedding for 14 days before their symptoms started. I was watching my Covid-19 patients carefully as I did not want to lose anyone on my watch. There were daily news reports about deaths happening at home when patients had been turned away from the ER because they were not sick enough for admission.
My staff and I were all working tirelessly for at least a month now under these heightened conditions. We knew sometimes we all needed a break so we could recharge to come back to fight another day. My staff really tries to not call me on my day off and let my other colleagues cover. While I generally have no clinical hours on Wednesdays, because of the Coronavirus, I instructed my staff that if there were anything acute going on with one of my positive Covid-19 patients of if they were unsure of any particular situation, PLEASE CALL ME!
It was a Wednesday. I was sitting on my porch – breathing in a breath when I heard my phone ring, it was a call from one of my nurses, “Dr. (removed for privacy reasons), I don’t know but I wanted to call – and I’m sorry to bother you, but Jacqueline didn’t sound so good.” “(removed for privacy reasons), you know I wanted you all to call me for these exact things- thank you for letting me know .”
I called Jacqueline- and as soon as I heard her talking, I knew – “Dr. (removed for privacy reasons) – labored breath- I am here-labored breath- I am here . As soon as I heard her voice, the years of medical training kicked in and I could actually visualize her based on how her voice sounded even though she was not in front of me, I could see her. She was in severe respiratory distress- “Call 911 immediately,” I said. I could hear it in her voice, she needed emergent medical attention.” Really Dr. (removed for privacy reasons)? You want me to call? Am I really that sick? Yes, you are. I do not like how you sound, call 911 immediately!” Ok, Dr. (removed for privacy reasons), ok I will I do it. I added please keep me posted.
Later that evening, Jacqueline called me from the hospital. Dr. (removed for privacy reasons) I am already at the ER and they have started me on oxygen. I breathed a sigh of relief- knowing that she had gotten there safely – she still didn’t sound good, but she was getting Vapotherm so could still speak to me with her voice, as this is high flow oxygen that is administered intranasally. I was worried for her- and didn’t think she sounded good, I told her please keep me posted on your care- while you are there. We came off the phone, I told her I am praying for you and rooting for you.
During this time of COVID-19, things had been non-stop. Sometimes, you would wake up at night or have a thought during your time away from the office – did I make the right call? Testing, quarantine, hospital- repeat. Testing, quarantine, hospital – repeat. Did I clean everything well before I came home? Is there any possible point of contamination to my family?
When over a week I had not heard from Jacqueline, between patients, I called and left a message. I looked through her chart and watched the harrowing account of her ICU stay including intubation, altered mental status, pneumothorax (a collapsed lung). I asked my staff to reach out and then I got a call from Jacqui directly from the hospital. “Dr. (removed for privacy reasons)”- I was so glad to hear her voice. “I ended up in ICU intubated for days, it was horrible. I am now on a regular medical floor- but the doctors say my lungs are not strong enough for me to be able to be discharged. Dr. (removed for privacy reasons) you saved my life…” She starts crying on the phone and the tears formed in my eyes as well. “I live alone, there was no one else that would have been there. “Thank you, you saved my life.” This echoed in my head, I didn’t know what to say, the very reason I went into medicine was to save lives – her words hit me in my heart, “that is why I am here. That is why I am here. All glory to God and you are a miracle.” To see what had happened, her survival was a medical miracle. And she was a miracle – the timing- the changing of my practice-asking patients to call every 1 to 2 days, and the amazing nurses and staff that are the team at the Women’s Center for Health and Wellness (removed for privacy reasons), New Jersey, it was team effort to save Jacqui and then our neighbors at (removed for privacy reasons) Hospital cared for her moving forward. I told Jacqui “I am here for you, call me when you need me, and make a follow up visit when you are out of the hospital so we can talk. You have gone through so much.” This virus had almost taken my patient’s life. As I have taken care of many patients with COVID-19, I have seen the variability and randomness of those that it hits very hard- and those that have mild to moderate symptoms. This is a novel virus- and it cannot be emphasized enough the need to wear a mask and wash hands and take this seriously. Because it is serious. What I have seen, is that we can only defeat it together. Humans relying on each other and those with medical training doing their best for every patient, and then Almighty God to step in when we have no more strength. That should be our creed for now – we have to protect and take care of each other.
Jacqui had a lot of cognitive involvement in her battle with COVID-19. The cribriform plate is considered cranial nerve I and is part of the central nervous system sitting right next the brain. In some patients, with loss of smell we also see cognitive issues because the virus has also affected their brain. In the case of Jacqui, because she was intubated for so long- she had to regain her strength through physical therapy. And she also struggles with the mental scars of the trauma that sometimes come after a long ICU stay that was also complicated by COVID-19 cognitive involvement. I am honored to be able to take care of her, and to continue on this journey to recovery with her as her primary care physician.
Time-wise, my illness manifested on April 1, 2020, and I returned home on April 29th, after almost 3 weeks in the hospital and then a short stint at (removed for privacy reasons), NJ. Before I left the hospital, all of my breathing issues had thankfully resolved, but I was extremely weak. After I came home, for a week or so, I was able to get up my interior stairs only by climbing on all fours. When I bent down to put leashes on my dogs, I was unable to get up. (My dogs are very short.) With in-home physical therapy, and some in-living room effort, I was slowly able to regain my strength. Within about six weeks of being released from the hospital, I had, for all intents and purposes, “recovered.” That would be Miracle Number 4.
What I expected was an overwhelming feeling of gratitude for having survived, for having been given a “new lease on life.” What I actually experienced was paralyzing fear and palpable anxiety. I felt there was danger everywhere. I was afraid to leave my house. I was afraid to get into my car. The thought of going into a public building was dreadful. I was experiencing depression and loneliness. It suddenly occurred to me what I had just experienced: I had been blind-sided by a novel virus about which very little was known; I had no idea how I had contracted the virus; I had survived by a very narrow margin; and over 68,000 Americans had already succumbed to the virus. I couldn’t wrap my head around how close I was to being 68,001— just another number in the ever-increasing tally.
While I was convalescing, I worked up my strength and courage to the point of walking my dogs around the block. The first time I got in a car was about a month after coming home. I drove with my dogs to a lake which was about 15 minutes away. I forgot “Right Turn on Red” necessarily entailed looking to the left before proceeding, and almost caused an accident two blocks into the drive.
I made it to the lake and walked uneventfully most of the way around the one-mile perimeter. Then I realized that my legs might not have the strength to make it back to the car. I also started feeling light-headed. By the time I got home, I was feeling very dizzy and went upstairs to lie down. Very soon, the walls were spinning about 50 miles an hour. The ceiling was still and the walls were spinning. Within 10 minutes, I was hyperventilating, seeing double, and my left hand went numb. I called 9-1-1 (which I had never done before my Covid illness), convinced I was having a stroke. The medics arrived, quickly diagnosed a panic attack, and generously helped me to calm down and catch my breath.
I think we have all had an anxiety attack at one time or another. Believe me when I tell you that “anxiety attack” and “panic attack” are NOT interchangeable.
About two months after returning home, I went to a doctor’s appointment. I felt perfectly fine that entire day until I began the drive home. It should have been a 15-minute drive, with a total of 4 turns. A couple minutes into the drive, I became very disoriented. I made turns for no reason and didn’t turn where I should have. It took me over half an hour to get home. There were moments when I literally had no idea where I was.
As of this writing, it has been over 5 months since I was discharged from Rehab. Initially, I was fearful, unusually emotional and over-reactive, all of which were not unexpected, given what I had gone through. Although I am fine most of the time, I have also experienced (to varying degrees) difficulty with: focusing; finding words; spelling words; retaining what I am reading; following my train of thought; following your train of thought; finding the correct word and knowing when I’ve found it; and having a thought in my head but not being able to express it at all. I am frequently apologizing for my verbal and mental stumbling and asking my listener for patience while I gather my thoughts and the ability to express the them. “Sorry, Covid brain.”
When I say I have difficulty finding words, I don’t mean it’s a “tip of my tongue” situation. This is more like I stop mid-sentence, unable to convey my thoughts or to continue speaking. About 2 ½ to 3 months post-discharge, I became aware this was happening. I was speaking to a friend on the telephone when I became incapable of saying “envelope” or otherwise describing that sealable thing you might put a piece of paper in. I became flustered and abruptly ended the call. Then I remembered the words “brain damage” being used in conjunction with the Coronavirus and I stacked that on top of my fear that I would contract early-onset Alzheimer’s just like my grandfather did. In short order, I was in full-blown panic attack Number 2, called 9-1-1 because I thought I was (again) having a stroke and was transported to the ER. Again, I was diagnosed with a panic attack like no other (except, of course, the other one).
All this post-Covid aftermath is frightening on so many levels. What’s really disconcerting is that these symptoms manifested months after my physical recovery, which begs the questions: Will my symptoms get worse? Will they ever fully resolve? Will new after-effects emerge? Are my symptoms even Covid-related?
Recently, I was visiting with my dear friend, (removed for privacy reasons). We were walking my dogs when I became very dizzy and unsteady. He helped me inside, where I lay on the sofa watching the walls move for the next three-plus hours, and we played “Which movie made this line famous?” until I could stand up. Sure, there are a lot of reasons you might have a dizzy spell or brain fog or a panic attack or suddenly can’t spell. But if you’ve never experienced any of those issues pre-Covid, maybe they’re related?
Have you ever heard of telogen effluvium? I wish I hadn’t. It’s a fancy name for this: your life gets turned upside-down when you get as sick as you could possibly get without dying; you wake up to discover that 68,000 people just died from what almost took you out; you learn you could go home to recover but you have to stay quarantined indefinitely (and you live alone and just spent 3 visit-less weeks in a closed hospital room); you begin to recover physically but soon learn that your disease has emotional and neurological components which no one anticipated; you begin a journey of varying degrees of cognitive misfiring and you have no idea when or if it’s going to self-resolve; and then your hair falls out. THAT’s telogen effluvium.
I see myself lying in the ICU with a tube in my mouth. My eyes are closed. I am above myself, just watching. I can hear the sound of my own breathing, nothing else. I see that image with stunning, fear-inducing clarity. Is this what an out-of-body experience is? That image (among other things) keeps me from forgetting how close I was to not making it out of the hospital.
I’ve included in my story a glimpse of my illness from the perspectives of my sister, my doctor and my closest friends. This Covid monster not only ravages its victims, it also wreaks havoc on the people who love them.
As time passes since I became sick, some things get increasingly scarier. Watching the proliferation of positive Coronavirus cases and the mushrooming of Covid-19-related deaths keeps my illness so fresh for me. So many people who have not been personally affected by the Coronavirus have become shockingly numb to the significance of the death tally displayed next to the face of every anchor on the news. So many people have succumbed to the merciless grasp of this virus; so many lives have been destroyed. My hope is that by sharing my Covid experience, I could help even just one survivor navigate the Covid fallout about which we are all learning in real time. If I could also convince one mask-averse person to cover his mouth, even better.
If we join together and meet this monster head-on, behave as if our lives depended on it, and let science and wisdom be our guide, we may just beat it after all. That would be Miracle Number 5.