One who battled COVID-19 is based in New York. In his late 40s, He is healthy, exercises regularly and does not have any pre-existing conditions. He is sharing his story to put a human face on the pandemic and to help build a body of observations that can improve how we – UNICEF colleagues around the world - manage the pandemic, whether we are infected or not.
Part 1. First symptoms: not knowing
How did you get infected?
New York city is now the epicentre of the US and global COVID-19 pandemic, but I think I was infected not here, but on a 16-hour plane ride over the Atlantic Ocean while returning home from a conference in Africa. While boarding, I heard a passenger on the phone sitting next to me discussing not feeling well, describing symptoms common to coronavirus patients, being denied testing, and mentioning a doctor’s advice to self-quarantine. In retrospect, I regret not questioning his risky behaviour or why he was not wearing a mask, but back then the number of confirmed cases in Africa and the US were still very low, and to avoid making a scene, I did not raise my concerns. In retrospect, I regret it! Since nobody else at the conference developed COVID-19, it is fair to assume that the man beside me on the plane did in fact have COVID-19, and probably transmitted it to me and other passengers, including the flight attendants. Social distancing is obviously impossible on a crowded flight – something still common on March 6 – and at the time, the lack of testing created the illusion that COVID-19 was not present in some locations. Even today, people should remember that the absence of confirmed cases in countries is not evidence of absence of the virus.
What were the first symptoms?
I was tired over the weekend right after my flight, and had a headache and gastrointestinal issues, but assumed it was jetlag and fatigue. The symptoms persisted, but were minor enough that I went to work on Monday, March 9. During a town hall meeting, the Principal Advisor for Public Health Emergencies discussed best practice guidelines that included asking all employees with any symptoms to be conservative and isolate themselves at home. When I heard this, I immediately informed my colleagues in the HIV/AIDS Section about my concerns. They asked me to leave – standing away from my office when doing so. They were absolutely right. As I left, I saw another good example of infection prevention and control practice by a colleague, cleaning the surfaces I had touched around the office. This colleague’s action alone probably helped prevent many transmissions, and as of three weeks later none of my Section’s colleagues had come down with the disease.
As far as you know, did you infect anyone?
Regrettably, I infected my wife. Besides her, I did not have any direct, extensive in-person contact with anyone in the period just before and after the emergence of my symptoms. A couple of guests had visited our home over the weekend, and we hugged them goodbye out of habit, but other than that we had been pretty careful. Luckily, neither guest experienced symptoms as of early April, well beyond the 14-day incubation period. For a few days my symptoms remained so mild that I doubted that I had the coronavirus, but I was conservative and cancelled all social activities.
Part 2. The virus takes hold: managing ever-evolving symptoms
What was it like being sick?
For a few days there was little change in my mild symptoms, but the disease really took hold on March 11. My headache worsened, with acute bursts of pain, accompanied by new symptoms including a sore throat, disorientation, and muscle pain over my entire body – more intense than any I have ever felt. The symptoms worsened the next day and a fever kicked in. Different symptoms accrued on March 13, including a runny nose and an upper respiratory tract infection. My wife was trailing with the same symptoms by about 2 days.
By this time, I realized we needed to contact a doctor and control the symptoms regardless of what the underlying problem was. On March 12, I started taking Ibuprofen for the pain, but soon discontinued it after reading a scientific report that raised concerns about its use for the treatment COVID-19, which was picked up by French media. As it turns out the evidence was not strong enough, but this example highlights how fast recommendations can change as a result of new evidence as well as how important it is to be vigilant against the spread of misinformation, particularly in social networks. In any case, we switched to Acetaminophen (i.e. Tylenol), which we took as the disease progressed. During that period, I added several other medicines at various times in response to specific symptoms, including DayQuil and NyQuil, two medicines available over the counter that fight common flu symptoms. I would medicate us tactically in the evenings to prevent the fever from spiking overnight. I was especially vigilant about controlling the fever, which is one of the most serious tell-tale signs of COVID-19. At times the spikes were incredibly rapid, with my temperature surging as quickly as one degree Celsius every hour. If not stopped, such surges can be dangerous, particularly if they happen while sleeping. This was a concern many times when the fever was hard to control. Over my second week wrestling with the virus, new symptoms emerged including chronic nausea and loss of appetite, an unusual eye pain, severe joint pain, both dry and phlegmy cough, congestion, and loss of smell and taste. I directly targeted different symptoms with different over the counter drugs, adding an expectorant (a medicine that reduces phlegm production) after developing respiratory problems. It’s a good idea for anyone who can to buy a small amount of these drugs to keep on hand.
Among the most challenging parts of managing the disease – both physically and psychologically – was its unpredictability. Several times, I could see the light at the end of the tunnel as the symptoms started to subside, but then new ones would emerge. The worst battle with the largest number and most intense symptoms lasted just over a week, until my fever, joint pain and nausea began subsiding. This allowed me to drop some medications while increasing those to manage my persistent respiratory problems, whose complications are associated with hospitalization. More than three weeks after my first symptoms emerged, I stopped taking all medicines. The whole ordeal from start to finish took a month, and with lingering headaches and coughing, I still haven’t turned the corner completely. Although COVID-19 affects people in different ways, and it is said that 80% of infected cases develop mild or no symptoms, my experience shows that people can develop moderate to severe symptoms which do not require hospitalization. Thus, as the proverb goes, one should hope for the best, but prepare for the worst.
Part 3. Navigating the diagnostic challenge
How did you manage to get tested?
Although my wife and I isolated ourselves from the world while sick, I quickly recognized we needed to know for sure whether we had the virus. Ironically, my job at UNICEF revolves around increasing access to HIV diagnostics in resource-limited settings, and I closely followed the COVID-19 testing saga in the news. My effort to get tested in New York was lengthy, complicated, confusing, and inefficient – an impression shared by many people in the city, the USA, and around the world, because demand for tests has far exceeded availability and many countries were not properly prepared.
On March 13, I called the newly launched New York hotline for testing as well as a local hospital and a private clinic. After waiting patiently on the phone, on hold with elevator music or loops of recorded messages, I was finally able to talk to a maze of confused people, who kept bumping me from one to another. In the end, all said they had no tests available at that time. Basically, I had a front row seat to the dysfunctional system that seemed to be trying to decide, based on limited knowledge and flawed guidelines, who should be prioritized for testing in a scarcity environment.
It took days of calling hotlines and following the news about New York diagnostics before I qualified. On March 16 I was able to contact a private clinic, which told us we could be tested, but only if we fulfilled a set of narrow criteria that were not representative of the variety of symptoms COVID-19 patients can develop. The lesson is, be informed, be patient and be persistent.
What was the actual testing experience?
The process of getting our COVID-19 tests highlighted the difficulties inherent in preventing infection in health settings. The waiting room at the clinic was filled with patients sitting close to each other, in chairs organized side by side instead of 6 feet apart. Some clients appeared to be waiting for a coronavirus consultation, but others were there for completely different reasons, risking infection simply by coming in to a poorly organized waiting room. I asked to sanitize a public tablet that we and all the clients were using for registration, but the receptionists refused, and instead pressed the next patient entering to tap away at the same screen we had just touched. Then, to make matters worse, during our COVID-19 tests when a swab was inserted into our noses, one of our nurses repeatedly touched and fiddled with her face mask, which increased her chances of being infected and highlights the urgent need for health worker trainings on correct protocols.
What was it like getting your results?
Two days after testing, on March 18, I was informed by the private clinic that my wife and I were infected with SARS-CoV-2, the coronavirus causing COVID-19. This was five days after I first tried to get tested and nearly two weeks after I was likely infected on the plane. It troubles me that no public health official ever called us to try and do contact tracing, even though we were among the first cases in New York City when containment might still have been possible. My wife and I did our own contact tracing, calling every person we might have touched, to inform them of our test results and ask them to isolate and monitor their symptoms closely for two weeks.
Part 4. When things got rough – the reality of hospital services in the epicentre
What’s the worst thing that happened to your family during this crisis?
My ordeal did not take place in a vacuum. I infected my wife. She started developing symptoms similar to mine and her progress closely mirrored my own, though for the first few days, they were less severe. This is not unusual as the phenomenon has been documented and there is some evidence that oestrogen might exert a protective effect on women. This was a great comfort early on, until she developed a new and frightening symptom that forced us to go to the emergency room of a large hospital.
On March 23, my wife experienced heart palpitations similar to arrhythmia, accompanied by chest pain, dizziness, and shortness of breath. On March 27, things got so bad that we visited a private clinic, where after some tests, the doctor instructed us to go immediately to a hospital emergency room. In the United States and many other countries, this can be more complicated than it sounds, especially when emergency rooms are overwhelmed with COVID-19 patients. As hospitals no longer allowed visitors, she had to go in alone, and we had to say goodbye without knowing what would happen next. Psychologically, this was the hardest moment of this illness for both of us.
Once inside she texted me about how crowded it was, with gurney traffic jams in the hallways, and how she was squeezed into a nook that had been repurposed for two patients separated by a makeshift curtain system. Doctors in the emergency room ruled her out as high-risk and – given the lack of beds – sent her home with an unconfirmed and untreated diagnosis of mild pericarditis (an inflammation of the sac around her heart). They suggested that she return if she couldn’t breathe or if her chest pain became unbearable. The unspoken message was that they were unable to do more in the midst of a public health crisis with an onslaught of patients facing immediate, life-threatening problems.
Even now as I write this, my wife continues to experience unsettling symptoms such as chest pain, heart palpitations and dizziness, even though her overall COVID-19 situation improves. Her predicament underscores the pressures placed on health systems by a flood of patients in extreme distress. The hard truth is that many people are going to suffer from a range of complications, without being able to get treatment. I’ve been lavishing all the care I can on my wife, but we keep wondering: what happens to someone grappling with this alone, or as a single parent with children?
Part 5. advice from a survivor
How did this affect you emotionally?
The rollercoaster experience had significant emotional and psychological effects on me. Anticipating and mitigating the symptoms has been tough at times, because in the back of my mind I am aware there is no cure for COVID-19. The only option is to let it run its course, manage the symptoms as best you can, and hope that you survive. Several times, it appeared one or both of us was getting well, before new complications would develop. Despite anxieties, I realized we were luckier than many, including people facing this illness alone. COVID-19 is forcing people apart right when many need in-person help and comfort.
What would you tell others grappling with COVID-19?
Even when I was in distress and dealing with the most severe symptoms, I tried to carefully observe, think about, and document my experience. As part of an effort to bring hope and support to others, I’m sharing some lessons learned regarding the COVID-19 epidemic based on my own life since March 6, as well as years of experience in public health:
1) Don’t panic, but take it seriously: COVID-19 should not be underestimated. It is highly contagious, a serious health threat to everyone, and at least 10 times more lethal than the flu. Do not listen to politicians who are not following advice from experts and are claiming that they are relying on their own instincts and judgment. A politicized response to the novel coronavirus can create and sustain confusion, reduce trust in science and evidence, and cause more fatalities and suffering.
2) Staying informed is important, and can help you feel more in control: Keeping up to date through reliable sources is critical to help make educated decisions about nearly all aspects of life during this pandemic. This is true in regard to the news media and national and global health bodies as well as local ones. Unfortunately, disease outbreaks are often associated with the spread of misinformation, which in the case of this pandemic has reached an unprecedented level. Even highly educated people in my family and my wife’s family sent us misinformation from dubious sources the entire time we were sick. It may be difficult to spot false news about COVID-19 as real facts mixed with speculations or malicious information may provide the illusion of legitimacy. Beware of scams, dodgy “experts”, and bogus cures. Count on science and facts. Above all, focus on getting information from reliable sources including the websites of the World Health Organization (WHO), UNICEF and Johns Hopkins.
3) Follow guidelines available online about social distancing and masks, learn what behaviours are risky, and what to do if you or a family member starts feeling unwell: Even if you are not sure you are sick – like I was at the beginning of this odyssey – it is better to be safe than sorry. Stay home and isolate. If you do start experiencing symptoms of COVID-19, responsible guidelines will tell citizens that going to the hospital should not be your first option. As I learned first-hand, many hospitals are totally overwhelmed right now, and you can get infected there even if you were not to begin with. Instead, start by isolating yourself and contact a doctor or clinic by phone or email to discuss your symptoms and get advice. Usually those experts can get you tested if it’s warranted, can tell you how to manage symptoms, and can explain which symptoms justify a visit to hospital.
4) Take responsibility and prepare in advance: Basically, this means being ready not to leave your house or apartment for two weeks minimum after developing symptoms, regardless of how mild said symptoms might be. That way, you won’t risk infecting others. Good preparatory strategies include buying enough food to last for 2-3 weeks and enough medication to manage the full range of possible flu-like symptoms. This second point was critical for my care; I believe that being able to quickly treat various symptoms – some debilitating – with over-the-counter drugs was essential to preventing further disease progression.
5) Have a clear plan for what you will do if the situation gets worse: What is the closest health facility you can go to, and do you have its contact information easy to find, even if you are in an extremely weak and disoriented state? How are you going to get there, especially if ambulances are overwhelmed? Who will you contact if you start deteriorating – e.g., health care provider, family members, friends, neighbours, supervisor?
6) Take responsibility for protecting others and informing those who you might have exposed: Informing others can be difficult, but it is always the right thing to do. I had prolonged contact with two other people right after I began experiencing symptoms, and informed them both immediately once we suspected it could be COVID-19, as well as after receiving our test results.
Contact tracing can be embarrassing or feel strange. Fear and uncertainty about the virus and the disease it causes can result in stigmatizing behaviour toward infected people or those perceived to be infected. I experienced such behaviour in my own apartment building during the first week, when my symptoms were increasing but I had not yet been diagnosed. I acted on a feeling of responsibility by telling staff in our lobby that I was experiencing symptoms of COVID-19. One individual became extremely agitated and yelled at us to go immediately to our apartment. This was jarring and surprising because I had a longstanding and friendly relationship with that individual. Stigma around being infected can often be overcome with increased knowledge, awareness, and empathy. Acting on that instinct, I contacted the individual by email, telling him that I was aware of how to behave properly and safely around others. I also shared some basic information about how the novel coronavirus is typically transmitted and some suggestions for how all staff might protect themselves better. In nearly any context, such a measured, empathetic response will have better results than an insulted or angry one. Soon after, the person who was so upset originally offered to buy medicines and supplies, an indication that most people are willing and able to be supportive once their concerns are acknowledged and addressed.
7) Express solidarity: In national or international emergencies such as this one, there can be no doubt that we are in it together, and should act that way. Just as the staff in my building ended up being supportive and offering to shop for me, there are ways to show solidarity and support for neighbours and other community members, especially the elderly and vulnerable. Besides obvious assistance with groceries or medicine, opportunities to help people in need might also include offering emotional support, even if only by video chat or phone, arranging logistics for transportation to clinics or hospitals, or helping with legal or technical challenges (e.g., setting up Zoom or some other way to communicate virtually).
My wife and I have donated to a number of fundraising drives for people going hungry in this emergency, funds for health workers to get PPE, and funds to prepare medical care for victims in underserved settings. If you can donate, please do so. We have also signed petitions calling for an end to the wildlife trafficking and deforestation that fuels epidemics like COVID-19, calling for more protections for at-risk workers, and more emergency aid. Many are in desperate need of help.
If you have had coronavirus disease and recovered, you can join me in donating blood for research into possible treatments. Research is happening now to explore if blood from people who have recovered, and thus have antibodies, could be used to help fight the disease.
I have been deeply touched and I am very grateful for the outpouring of support from so many in my hour of need. It’s brought home to me that this is a time for love, compassion, understanding, and care.
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