Caregiver: Surviving Covid19 Coronavirus
Updated: Mar 2, 2021
:: First, a disclaimer: What you read here is not medical advice. I am sharing my story because I have found myself repeating the same story to everyone. I thought it would be best to write about it so that it’s documented and easier to share. There’s a lot of people who are advice friendly on social media, which I find dangerous. I think it is best to share our own personal stories about Covid19, as we care for each other as a community. This is one of those stories. It is the perspective of the Caregiver. ::
Recollection as Re-Traumatization
Writing is an easy craft for me. I have been writing since I was a child. I can do difficult personal subjects. I can switch genre. But this topic has been difficult to write about because whenever I try and recreate what happened to my husband in December, I subject myself to re-traumatization. And then I stop. But having shared our story many times to friends now, I have also slowly emotionally distanced myself from the traumatic experience. I am hearing more people getting infected and not knowing how it happened. There is also the new more infectious variant scare. I hope by writing our story that someone out there may learn a thing or two from what we went through.
Before Covid19 Came Home – The OCD Prepping
The second week of December was my mother's birthday week. Normally, we would both be in Jersey City celebrating her. Because my husband never stopped in-person work as a health care worker (I won’t get into specifics here), I have told him that we can’t visit my family in Jersey the way we used to until this epidemic is over. My family members in Jersey are on the “vulnerable list,” and the two of us live in what was called the “epicenter of epicenters” of the epidemic in NYC. We will not make safe company for my mother and my brother. Although I have also worked remotely since March of 2020, my husband has never stopped working in-person, and therefore, was on a constant high-risk exposure.
Because of his work, we have prepped well since February last year. If you see my other posts (this is the third) on my blog, you will realize that I have gone into hyper-OCD in prepping at home. I have received many emails from friends thanking me for all the Facebook alerts and posts about Covid19 since the beginning of 2020. I did have friends in China who were quarantined in January 2020, the firsts in the world, so I watched what was happening to them as death rates started climbing there. When everybody was talking about The Flu, I was posting heavily on Covid19 – knowing that it was on its way here, recognizing early on that this had nothing to do with The Flu whatsoever. I also preached about Covid19 at work and prepped my staff, just to show you how serious I have been about the epidemic before it was even called a "pandemic". While so many I know were preaching conspiracy theories, I became somewhat of an online Cassandra.
I also read everything that came my way for months. I used to collect these articles, until they started to repeat themselves. Many decisions I made in December were based on my meticulous reading about Covid19, from personal experiences posted on social media to scientific data. I saw CNN's Unseen Enemy several times and started following scientists on Twitter.
I begin with our prepping because it has much to do with our survival in December. We live in a one-bedroom apartment in Jackson Heights, a few blocks from the infamous Elmhurst Hospital that birthed our national nightmarish images of trucks-turned-into-body-freezers. For many of us in the most diverse NYC borough, the epidemic wasn’t only visual, it was auditory as endless cries of ambulances assaulted our senses day and night. There was no escaping it with closed windows. What you couldn’t see, you would hear. Netflix offered little relief.
Just to layout what I mean by “prepped,” we have the following at home: boxes of face masks and face shields of all kinds, boxes of plastic gloves, book shelf turned into a medicine cabinet of Tylenols (not aspirin), bottles of electrolyte, flu medicines, bottles and bottles of 90% rubbing alcohol, and most importantly, oximeters and thermometers (both oral and scanner). The entrance to our apartment has been turned into a decontamination room where we hang our masks and face shields– with labels – on the wall. His is on that wall, while mine is in the other hallway.
Not only in our apartment, I also always wore a combination of mask and face shield wherever I went. I have done this since March 2020. I have never failed to wear a face shield, no matter how ridiculous I looked to some people. I have seen many people in the streets who don't even know how to wear a mask properly. We don't know who is sick around us. We don't know when and if we are sick. Infected people are contagious and not know it. What I know, I can protect myself better, and by doing so, also protect others.
I must also mention that since March, I have been an avid buyer on Ebay. I am also on Amazon Prime, and Groupon. During the pandemic, I have found Ebay to have more choices of what I need. I have also been conscious of the small businesses I am helping by purchasing everything on Ebay. The masks below, which I have bought for myself and also gifted to others, are all from Ebay.
On Ebay, they are called "fisherman cap."
Further reading, my previous blog posts on the Coronavirus:
Ordeals Begin with Sniffles
On Tuesday of my mother’s birthday week, my husband started showing symptoms. He said it was his allergies. I thought it was something else. Since he worked all the time, and I was home all the time, our interaction was mostly after work – late night. He worked extremely long hours, every day. No weekends at home. He started with the usual cold-like symptoms, sniffles, slight throat issues. On Thursday, his patient was rushed to the hospital. (There is a whole story on the transmission that I won’t go into detail here, to protect his peers. That story in itself was tragic. Suffice to say, he caught it at work.)
By Friday morning, he found out that said patient was positive for Covid19 and he was instructed to take the test. I was on a webinar Friday morning when my husband was in line for the test. It gave me a few hours to think about what to do if he indeed tested positive. I set up the living room as planned during webinar breaks.
When he texted me that the test came back positive and he was on his way home, I told him to not take off his mask. The ordeal had begun. Covid19 was in our home.
Behold the Healthy
People love to ask this question—do you have pre-existing conditions?—when they hear about severe Covid19 cases. Since March, we have been told to believe that the more vulnerable you are, the sicker you become when you catch it.
Let me tell you about us. We are a couple who drink our water with ground flaxseed and quinoa. When we couldn’t go to the gym during the pandemic, we bought a “gym.” We have weights, a bench, and a whole box of elastics in our living room. I started running in the summer when they opened the streets (i.e. no car traffic). We religiously took Zinc, Vitamin C, and Vitamin D every day. In fact, I am on a 50,000 weekly dosage of Vitamin D because I happen to be deficient. (And google the whole Vitamin D and Covid19 love/hate affair if you don’t know.) My husband boiled fresh garlic and turmeric and drank it as tea every day. He took teaspoons of Apple Cider Vinegar on a daily basis. I personally couldn’t do either until recently, in fact not until our December ordeal.
Something I read about very early on was Cytokine Storm, and how Covid19 could possible attack those who have strong immune systems. I already knew that staying healthy as a way of life was not an instant protection from Covid19.
More about Cytokine Storm:
Weekend with Covid19
On Saturday, the day after he was confirmed positive, I started writing an email diary. It was mostly for remembering what I was doing--so I would email notes to myself on my phone. I was already on full PPE garb by then – not the traditional PPE but a DIY one. I was in the bedroom, he was in living room. It was a warm winter week, and the generous weather allowed us to keep the windows open for a week. We had air circulation. I put a fan in the living room. I ordered an air purifier on Amazon Prime on Friday, and it arrived on Saturday. The unseen enemy was already around us. It would have been difficult to evade it if it had color. I just assumed it was everywhere, and I made sure it wasn’t in the spaces where my husband was not allowed to go – the kitchen and the bedroom. The bathroom was another conversation.
I also had turned the bench press into a medicine table, and repurposed some small tables and chairs as different “Covid19 Stations” everywhere to avoid inter-contamination. I lost my work laptop "desk" to a Covid19 station. I separated our eating utensils, and kept a small set of mine in the kitchen. The living room was separated from the rest of the spaces with curtains, a visual reminder of where the concentration of virus was (living room) and the need to switch gears whenever I crossed the threshold. I was very aware of how the virus was injected into the air. I had seen all the video experiments (read here). I understood the logic behind outdoor eating spaces, and how air circulated. I read them all. The goal was to recreate a well-circulated space so that the virus didn't sit in the air for a long time, so it would disperse easily or land anywhere in big concentrations. The goal was to break it up so that I wouldn't inhale it if I walked through a cloud of invisible viruses. There was also the risk of it landing on my PPE and my touching it later (fomites). My husband was wearing a mask the whole time, but at night, that was a difficult thing for him to do.
By Saturday, my husband started to have more symptoms. I could hear him coughing while he watched TV. Later that day, his respiration started to change. He was already on Flu medication for the whole week. Whether that helped or not was difficult to ascertain, but by Saturday, the fever began as well.
My husband, the caregiver, was now the patient. I was now the Caregiver. Closest to my husband way a tray full of MUSTS: Do your oximeter, Take your temperature. A mantra for weeks to come. I also told him to either sleep on his side or on his stomach, to open up his lungs. He has always been a side-sleeper, unlike me who can only sleep on my back. I have read about patients being put on their stomach in the hospitals.
Since we were now in separate rooms, I was worried that I wouldn’t hear him if he called me late at night. Keeping his oximeter and thermometer company was our Christmas bells décor which we usually hang on the door knobs. I asked him to shake it if he couldn’t speak so I would be alerted. I, the light sleeper, would hear.
My diary first served as a monitoring tool of my husband’s oxygen level and temperature, until I decided to google a more organized monitoring sheet. I thought that there must be one, having been in this epidemic for ten months now. I found and printed and started using this instead (Find here):
I started filling out these sheets a few times during the day. Since I couldn’t go close to him, I asked him to take a picture with his phone and text me both the images of the oximeter and the thermometer. Since the text and images have dates, it was easier for me to jot down the numbers, or do it later if I forgot.
Of course reading the oximeter is another issue. There are two numbers on the oximeter -- what are they both for? Which one is the oxygen level? While most of us are trained since childhood to read a thermometer, an oximeter is a whole new tool all together. I bought mine in March, but never used it. At the time, they all disappeared from the pharmacy that I had to order it online.
More on the oximeter here:
https://www.everydayhealth.com/coronavirus/can-a-pulse-oximeter-save-your-life-if-you-have-covid-19/
Sunday. He was now having difficulty walking to the bathroom. A co-worker suggested a urinal way back but I never took it seriously because our apartment was small enough that he could easily walk to the restroom. I didn’t realize that he would get so bad that getting up from the sofa would take such a heavy effort. I brought a bucket from the kitchen so he didn’t have to go to the restroom to pee. We don’t hear or read much about patient’s daily struggles with Covid19. They always say – quarantine at home until you get better. Fourteen days! But nobody talks about what really is happening on a daily basis (forget hourly) of those fourteen days.
And what was happening to someone so healthy was a worsening, a quick downhill progression that questioned everything I read about this virus. As well-read as I have been about it, I began to see loopholes – things missing in the narratives. I began to question the meaning of “mild” and realized that it was a terrain bereft of personal accounts. Since so many claimed to be "mild," we really didn't know what it meant. Was there a thin line between "mild" and "severe." What exactly was happening when they crossed over?
By then, I knew that my husband couldn’t get up to get water, nor go to the restroom. Eating, by Sunday, had become an excruciating effort as well. We had ordered three big platters of his favorite pupusas, but he could not even finish one piece. By then, I knew something was really wrong. I knew something was off. I knew this was not the “mild symptoms” language candy we often read about. He just did not look right.
I started looking for articles about the daily symptoms of Covid19. There weren’t a lot. I wanted to know what to expect on a daily basis, how it progresses. There seemed to be a one-week, two-week progression mid-points that could inform whether someone was getting better or worse. It was his first week. He had gone from an X-ray of clear lungs to fevers, coughing and shortness of breath. Is this normal? I kept asking myself.
We have been told to self-quarantine and self-medicate with off-the-counter medications. I had a whole bookcase of cold meds. I ran into an article about cough suppressants vs. decongestant, and realized what I had at home (decongestant) wasn’t the one he needed. In my full garb of masks and face shields, I went out to pick up more essentials—more bottles of electrolytes, better medication, paper towels, plastic garbage bags, and a new cough suppressant (!!!!)
Time line Check: Monday - Friday, early symptoms. Friday, tested positive, with an X-ray showing normal lungs. Weekend, Got worse. Fevers, Coughing. Shortness of Breath. Weakness.
More here on Covid19 Daily Progression:
More on Air Circulation
More on Monitoring forms:
https://www.hss.gov.nt.ca/professionals/sites/professionals/files/resources/monitoring-form-case.pdf
Who Surrounds Us
We are who surrounds us. Filipino-Americans on the East Coast have historical ties to the medical community. I am one of them. Almost half of my father’s ten siblings were doctors. My brother-in-law is a doctor. I am surrounded by nurses and other frontline medical workers from the whole ladder of health care workers. I had a bag of PPE at home—real not DIY—that my sister gave to me after caring for my Aunt (also a doctor) who passed in May last year. Her PPE was my backup.
Needless to say, I had access to medical advice, both fact and opinion. I didn’t post my ordeal on Facebook until it was all over (weeks later in fact) because so many people I “know” are quick to offer unsolicited advice. In times of desperation, we believe them. They are as dangerous as consulting a Filipino Faith Healer. I saved myself from the tragedy of Facebook doctors-wanna-bes by keeping my ordeal within my immediate family and inner circle—in other words, people I trust with and know in my life. Most of our exchanges were happening on TEXT.
On Sunday, my husband called his health provider and left a message to call him back. We never heard from them. On Monday, I called CityMD in our area and also his health provider and also never heard back. I wanted to get him an Xray. But since it was impossible for him to walk a few feet to the restroom, I couldn’t imagine how we would go to the local CityMD ten blocks away. By Monday, he was already experiencing fevers over 101 degrees, incessant coughing and shortness of breath. My husband, being the nice and gentle person that he is, doesn’t speak the language of suffering and hyperbole. So when he told me he had shortness of breath, I didn’t fully understand the severity of it. I could only tell that he could no longer formulate one whole sentence without stopping multiple times to catch his breath. He was all gestures, and even that was difficult for him.
My communication on Text with my medical circle had come full swing. My brother-in-law in California, who has treated Covid19 patients, joined my text circle, as advised by my sister. On Monday, I was already trying to figure out what to do in case he got worse, although at that point, I really didn’t know what “worse” meant.
On Monday night (Tuesday 1am), I got up from my bed because my husband was coughing non-stop. I put my PPE on, went to the living room to check. He was sitting on the sofa. He told me something different – he said, in Spanish, our language at home, that he was “burning inside”. His temperature was 102. I could bear watching him suffering like this. I texted my friend in panic and told him I was calling 911.
I had never called 911 in my life, although it was a part of the lesson plans I created in my decades in adult literacy. I personally didn’t have experience with it.
911 at Midnight
“Is he breathing”? The 911 woman asked. I don’t remember what I said, but she asked the question three times. I told her that my husband had Covid19 and could hardly breath. “His temperature was very high, please send an ambulance”. I gave my husband a new bucket with warm water and a towel (my mother’s advice) so he could put the warm towel around his neck and lower his fever while we waited.
A heavy set EMT man in full PPE showed up. He stood many feet away from my husband. He must not have minded standing next to me because of what I was wearing. I told him that my husband’s oxygen level has dropped to 92. I have read that when you hit 92 (and 98 is normal), you must call the doctor. The man didn’t check him, and just stood there. He started telling me that my husband didn’t look bad. He told me that there were worse cases than him. When I mentioned the oximeter reading, he told me that my oximeter was cheap, and that he would only bring him if he’s reading has dropped to the 80s? He also said that if he brought him to Elmhurst hospital, my husband would only wait there and get discharged. The idea of going to Elmhurst hospital was terrifying. Without him going into details, he brought back all the stories I heard about the emergency room there. And since I have friends who were admitted there during the height of the epidemic and someone who worked, I knew what was going on there. When my husband heard the EMT, he said that we would stay. He took solace in hearing “you don’t look so bad.”
When the EMT left, he screamed at me, “You should get out of here.”
I whispered, “Fuck off.”
Tuesday Everlasting
We hardly slept. My husband doesn’t know how to complain. Pulling out information from him was not easy. We barely ate breakfast. My husband couldn’t really eat. His fever was going on a see-saw. The coughing was unbearable to listen to. Since shortness of breath was preventing him from fully communicating, I had to read his face and body. I had to make a decision. Today. Now. Right that very minute.
Not that we didn’t call his medical providers. We did. It’s that no one called us back. When I brought up getting him another X-ray (he got one on the day of his positive test) to my friend, he said to me by text that the X-ray wouldn’t tell us much. There were other peripheral issues related to Covid19.
What he said didn’t really sink in. I didn’t get “peripheral issues.” I was so focused on his lungs.
At around noon, with no hopes of hearing back from anyone, I asked my friend for details on Columbia Prebysterian. So you know, we live in Jackson Heights, Queens. Why my friend was referring us to a hospital in Washington Heights, in Manhattan, on 168th street was a complete mystery to me. All I knew was that he works in one of the Queens hospitals and never failed to tell me what was going on at his job. Perhaps that was the reason I was horrified that the EMT might bring my husband to Elmhurst Hospital. Columbia Prebysterian was not in Queens, but we would have to take a cab to go there.
I called a cab and learned it’s $40. Did we have $40 at home? Yes, I have $100 in fact. Good enough. I told my husband I didn’t want to go through what we went through last night. We should go to the hospital as advised. I also asked my brother-in-law, a medical doctor, and he said, it’s a good idea. My husband agreed it’s worth trying. He could get an X-ray and other things at the very least, and we could always take a cab back, all the 40 minutes on the cab.
Time line Check: It's been a week since he started showing symptoms.
The Go Bag
We have a disaster Go Bag, but we didn’t have a hospital Go Bag. When we packed, we only packed his charger, his personal information (cards, I.Ds), extra masks, and plastic gloves, and money. I wasn’t thinking any longer. I just wanted to get to the hospital right away.
In retrospect, our Hospital Go Bag should have contained: extension cords for the phone, charger yes, photocopies of names of emergency contacts, photocopies of insurance, a book to read, a notebook and pen, phone chargers, cash cash cash (taxi cab cash) and most of all, non-perishable FOOD and bottled water.
West 168th Street
I would normally hold his hand. We had been in cabs going to the airport, and we were always holding hands. I was wearing plastic gloves, and he winter gloves. I told him to close his eyes and relax. We would get to the hospital soon. Between us and the taxi driver, a plexiglass. That was a slight relief.
If I would have gotten infected, it would happen on that day. I always thought of Tuesday as the day when my walls broke down. I wasn’t emotional, not crying, not panicking. I was focused, but in the desperate attempt to get him to the hospital, I knew that my guards had crumbled as well. But I had to walk him to the cab, and we had to sit together in the cab for 40 minutes. Even if I slightly opened the windows for air circulation, I knew I was too close to him. I was aware of the risks of close proximity. We were going to the hospital, and I have heard all the stories. I didn’t want to think about what could possibly happen there. I just wanted to know that he was going to be all right. I didn’t give myself a choice.
I had never been in an Emergency Room. I didn’t even know what happened in that part of the hospital.
When we went into the building, we went straight to the front desk where everybody was in PPE. I signed up my husband and told the woman that he was positive and needed to get checked. There was a ramp to the Covid19 section. The woman told him to walk there. I said, “I have to walk with him because he is very weak”. The woman told me he had to go there by himself. That made me nervous.
I had to think fast. By then, my husband was already at the door. I went back to the woman and told her that he was my husband and I needed to get a test. The black woman screamed, “You are a patient, too!” I said, “Yes, I am a patient.” She gestured me to go in, and I ran to where my husband went.
My husband was next in line in this relatively empty Covid19 lobby. I asked him to sit down and that I would wait for him. When I got to the front of the line, I asked him to join me. He gave his data, and got his hospital bracelet and was directed to one of the nurses waiting by the entrance to the main Covid19 unit. When it was my turn in the line, I got a bracelet too. Seeing my husband being checked was a sign of relief. He was taken into the Covid19 section where the rooms were, while I waited for my turn. Before I got in, a staff came to me and asked me for information. I also told her that I wasn’t there by myself. I gave her my husband’s information and told her to make sure that they had my name as an emergency contact. I was often wary about these situations because my husband and I don’t have the same last names. I kept a picture of our marriage certificate on my phone for exactly this situation. Luckily, the staff willingly added my name to his online file. My husband texted me that he was inside in a room. I told him to take a picture of where he was, and send me the picture.
By now I understood why my friend sent us there. I texted him and told him that I really liked the place and that it was empty. He told me that it was the “number one hospital in NYC”. In the lobby there were stations where you could rate the cleanliness of the hospital. There were sanitizing stations everywhere. Some seats were taped to keep us six feet apart. I didn’t see the tragic emergency room scenes I often saw in TV medical series.
Inside the Covid19 Unit
I grew up in hospitals. My father was always in the VA hospitals in Manila and on 23rd street in Manhattan. I knew what to expect. While a labyrinth for some, it was coming home to me. I would be taking my third Covid19 test.
The South Asian health care worker who gave me a swab and took my blood was very cordial. She was probably one of the nicest ones I ever met. When I asked her for tissue, she gifted me the whole box. I told her about my husband and that I needed to see him. I told her that he said he was inside in a room somewhere. She asked where, and I showed her the picture my husband sent by text. She walked there with me.
The Covid19 unit wasn’t the nightmare I saw on TV during the height of the crisis in NYC. It was busy, but not terribly busy. I couldn’t imagine what that place must have been like in the spring. The staff didn’t look as tense. Many were very friendly.
We found my husband lying in bed in a single-bed observation unit. I immediately took a picture of the sign so I know where he was. The woman opened the door slightly so I could talk to him. She said to me, since he’s your husband and you live together, it’s okay. I asked him how he was, and he said he was okay. He asked me to take the iced water from his hand and ask for water without ice. I went in and did that. I got to see him closer. He was attached to a machine, with the blinking numbers on it.
I told him that everything was going to be fine and that I was going to wait for him outside. He told me to take care of his family for him.
I went back to the waiting room and started texting people who live around the block on how to get a cab. It was then that my husband texted me again and said that he was going to be admitted. That wasn’t part of the plan. I looked around trying to figure out how to sneak back into the unit.
I had a patient bracelet on me, so I wasn’t suspect. The doors opened wide and took time to close back in. Sneaking in was the easy part. Finding him again required remembering how I walked out. When I found him, I stood outside again. A nurse told me to go inside and keep the door closed. I forgot that it was a unit for those who already have the virus. I took pictures of everything I could. I even videotaped the whole room. I saw an outlet on the wall next to the bed. I asked my husband where his charger was. I immediately took it from his bag, and plugged in his phone. I had been worried about him losing batt. I usually carry two portable batteries with me, but I left them at home. But the charger cord was long enough for his phone to be on his side. The goal was to maintain contact at all costs.
Another nurse saw me inside and screamed at me to get out. She said only people with PPE could be in there. What did she think I was wearing?
I asked another staff if my husband was getting food. He hadn’t eaten all day and we didn’t bring food. She said, yes. I told him he would get food later but he should ask for it, too. Leaving him there was the hardest part. I have read all the stories. The Ipads. No visits. They were all real. I was only inside because I made myself a patient. When someone stared at me, I made my bracelet visible so they would leave me alone. When it was time to go, it was time to go. I told my husband, Te quiero mucho, so he had the comfort of those words until I saw him again.
Time line Check: Tuesday was exactly a week after he started showing symptoms.
On the Train
I didn’t leave immediately. The Covid19 waiting room had a charger section. I charged my phone before I left. I was after all on the Upper West Side, very far from home. I wasn’t sure what I was feeling at the moment. I was exhausted, more so emotionally exhausted. I couldn’t take another cab home. I am a bit cab averse as I have motion sickness. The train would work just fine. It would give me time – to think.
To think, and nothing else. I thought about what I had to say to my husband the next time I spoke with him, which would be as soon as I got off the train. I remembered what he said about – taking care of his family – and how I needed to reverse that narrative of fear. I sent the pictures of the room and the machine to my brother—in-law and friend so they could teach me how to read it. They said his pulse was high, but he might be nervous, and that he definitely had SOB (shortness of breath). I also told my family that Carlos was admitted. I told them I was okay as their default was always to ask me how I was. I never quite thought about myself for some time now, and not even a bit worried as I was a walking PPE.
The train trip was my brain in a numbing progression of time. Language has been my gift. I could destroy and uplift with it. It was easy for me. The immediate goal was of course to bring hope to my husband, and I knew then what I had to tell him.
When I got off the train, and called him, I told him, you’re in the number one hospital in New York City. That’s why we brought you there. You are going to be okay. But you have to be optimistic.
I spoke with my mother afterwards. She had been through this ordeal with me. She told me what I had to do next, which I didn’t tell her I already planned. Go home. Spray Lysol everywhere. Open all the windows. Go to bed.
And that’s exactly what happened.
The Next Day
In bed, I texted my husband all night. Plugging his phone proved to be a great idea. He could talk again, so we spoke as well. I asked him what was going on. He was on oxygen he said. He had tubes in his nostrils. He sounded, for the first time in days, like he used to be. He could speak in complete sentences without catching his breath.
He told me that he asked for dinner. A white man (staff) came to his room and started screaming at him and blaming him for Covid19. He told me he ate the worst dinner but he was so hungry that he ate dry hospital burger anyway. I told him not to engage when that happened again, because he didn't want to be a target.
At midnight he texted me and said that a black female doctor came and took off his oxygen. She told him that he was – stable. (I would often ask him to describe these people coming to him, especially that he didn’t have their names). I have been taught to always remember their names as these staff sometimes go on rotations.
Stable. Stable. He was NOT stable?
I don’t quite remember when he started getting his cocktail of meds. What I can remember is that I have never heard of most of them, except for Remdesivir. I could talk to my husband when he was on oxygen, but when he’s off he immediately went back to shortness of breath, so I had to make sure I got as much information as I could. He told me he was receiving a lot of medication the next day. I recognized the fact that most hospitals knew more about the virus than they did ten months ago, and that whatever they were doing now was definitely from lessons learned from the tragedy of Spring. I took comfort in that reality, although I still wanted to know exactly what his treatment was. My brother-in-also also asked me what they were giving him so he could explain to me what was going on. He also asked for his X-ray.
My husband told me they gave him steroids. I didn’t know what they were for.
At home, I cleaned. I went to the laundromat and washed my clothes that had been sitting there for days. I didn’t do his, so his clothes could sit there for days until the virus weakened and died. I started rethinking my prepping. I was missing a lot in the past days. I bought a few foldable tables, more electrolytes, new oximeter and a new oral thermometer, regular Tylenols. I was now prepping for the possibility that I might already be sick.
Contact
What makes Covid19 very challenging to families impacted by sudden hospitalization is the loss of contact. While I was lucky to have maintained contact with my husband, I had no contact with medical personnel. I didn’t know whom to call. I didn’t know exactly where he was in the hospital. It was good that he could communicate with me, but as I knew from his experience at home, he was already very foggy and couldn't really think much. I didn’t want to stress him out. During my father’s hospitalizations, we were always in the hospital with him, talking to doctors. My Aunt would come with her doctor friends and interrogate the medical personnel. I would watch as I absorbed the medical information, most of which I couldn’t understand. In the case of my husband and for his own sake, I was very desperate to learn every single detail of his treatment. While I had my own discharge papers for being tested there with hospital phone numbers, it still took me some time to find the unit where my husband was eventually moved to. I would have otherwise been there every single day of his hospitalization, with a notebook as I would have done exactly the same kind of interrogation my medical family used to do when my father was interned. But none. None. I had no contact. I didn’t even know the name of his doctor.
The Treatment
It was on Wednesday when I told my husband he had to ask a lot of questions. He was on oxygen and could speak. I could demand a little bit more. He was moved to another unit with another recovering Covid19 patient, an Arab man. The word “recovering” was comforting. I also asked my husband to take a picture of everything. He sent me a picture of the name of his doctor. Now I have a name.
My brother-in-law texted me a list of what he wanted me to find out. A list of acronyms, Med-speak. Now that I knew the name of his doctor, I could call and asked to speak with her. I could also ask her to give me the numbers for all these acronyms that I personally didn’t understand. I just needed the numbers. My brother-in-law would interpret. What was his treatment -- was his big question.
I was learning new words from my husband: Heparin that went into his stomach, and Demathesone, the steroids. I already knew about Remdesivir – and the controversy around its usage. Because he was asking a lot of questions, he found out the he had Covid Pneumonia, which explained the SOB + Cough + High fevers. When he had an x-ray when he tested positive, his lungs were still okay. Our weekend of hell was all about Covid Pneumonia. Now we had a name. Even a name brought comfort. No need to explain it further.
On Wednesday, whenever my husband was off the oxygen, he immediately went back to shortness of breath. He had no fever by then. The coughing had stopped as well. He especially had a reaction after they took his blood on his fist. He went back to his bed and couldn’t breathe well again. The doctor told him that if he continued improving, he would be discharged. When the doctor found out that my husband had shortness of breath when he went to the restroom he was told to stay on Thursday for observation. On that day, there was a snowstorm in NYC.
Bureaucracy
One of the things I learned as a child who spent many a day in a VA hospital is to remember names. I memorized names from name tags of my father’s doctors, and immediately use them when I said, Thank you, Doctor _____. I obviously couldn’t do that because I had not been back in the hospital since we went there on Tuesday.
I googled the name of the doctor and didn’t find anything, so I went to my favorite research library, Twitter. There was an article in USA Today with her picture and how she has been in the middle of the fray since the epidemic hit NYC. Information to use. I had planned to call her to ask her how my husband was doing. I had my list of questions, the acronyms my brother-in-law had given me. She could also explain to me why they were doing what they’re doing.
I had been struggling to get my husband’s X-rays. Staff at the hospital kept on telling him that he would get his information after he's discharged. But I wanted it now. Now, my brother-in-law wanted it so he could tell me what was going on. My husband had to authorize me before they could give me access to all that information. I didn’t know that. I tried to get my own information because two days after getting tested, I had not received a call from the hospital.
When I left the hospital on Tuesday, I got two contradictory statements – that I would be informed of the results the next day and that I would be informed after three days ONLY if I were positive. If negative, I wouldn’t hear from them. So I went looking for information from them. I needed validation codes to get a MyChart account. My own discharge papers didn't have validation codes. I went through the whole process that involved sending them my I.D and actual pictures of my face, but wouldn’t hear until seven days later. It was a dead end for my own personal information. Forget about getting my husband’s.
At the very least, I got hold of the nursing station where my husband was. I had one ONE phone number. A life line to the professionals. I counted that as success. Of course that was after several phone calls later.
The Dominican Homophobe
On Thursday morning, the day NYC was hit with a snowstorm, I spoke with my husband on the phone. I could tell he was improving. He told me that he was taking his oximeter last night after walking a little bit, and he was maintaining 94. I was told that they probably wouldn’t release him until he had more stable oxygen levels (95 and up). I had to confirm that info with the doctor.
He was on speaker phone whenever he spoke with me. It was easiest because he didn’t have to lift his arm to bring the phone to his ear. His previous Arab roommate had been discharged and he had then a new one, a Dominican man (the hospital is in Washington Heights). Before I hung up the phone, I could hear the man’s voice in the background but couldn’t figure out what he was saying. My husband texted me that the man started harassing him for being gay and started making homophobic remarks.
Since I now had a direct line to the nursing station, I called and found his nurse. Her name was Lara. I thanked her profusely for her service and for taking care of my husband, and showered her with praises. I told her (as my mother advised me) that my husband was one of them, that he was also a health care worker who got infected at work. That morning ,my husband’s patient died. My husband called me crying on the phone. I told Lara that as well, then I added, “that’s not the only reason why I am calling you.”
“My husband has a new roommate. He is harassing my husband and making homophobic remarks. My husband is very weak, and he cannot recover if someone is threatening his life. He doesn’t deserve being put in that situation. My husband doesn’t know I’m calling you about the situation.”
Lara told me immediately before we hung up, “I won’t tolerate that.”
When I texted my husband about what I did. He told me that in that very moment Nurse Lara was wheeling the Dominican homophobe out of his room, saying simply, “I’m moving you.”
“Good,” I said, “Now you have a private quarter.” What I was thinking: and that man can fucking go and rot in hell.
Blood Clots
I got hold of the Doctor on Thursday. I had to ask around how to pronounce her Polish name. I thanked her profusely for what she was doing. I told her I was one of those people clanging pots for her and my husband since March. I started asking her my list of questions, and she was more than willing to answer them. I told her the doctors in my family kept asking me a lot of questions but I had no access to any information. Thanks to her explanation, my husband’s condition and treatment came to full light. Although I didn’t understand the acronyms, she explained them to me in detail. She talked about inflammation and blood clots – two things I only read about but didn’t realize to be so critical. The conversation made me glad we went to the hospital. We can't diagnose blood clots at home until it’s already very bad. It wasn’t even in my vocabulary on what to watch out for. As my friend told me before, getting him an X-ray wouldn’t be very telling of the whole picture. Covid19 is very complicated. Different bodies. Different reactions. And most of us are very focused on cold symptoms related Covid19.
It was a snowy day on Thursday. My husband was asked to stay and be observed for another day. Thank goodness. It would be a challenge to get a cab back to Queens in the snow. I went to the laundry to wash my husband’s clothes. I bought many new things to add to our regimen at home for when he came back. I finally took a shower, albeit with a mask on. I added more hooks in the restroom on which to hang a mask when we took showers. Our shared bathroom was a Covid19 haven. I had not entered it since his infection without my PPE. I brought my own toilet paper. I had a little Covid19 station there as well with 99% alcohol bottle and paper towels. I washed my face and brushed my teeth in the kitchen, where he was not allowed. Taking a shower for the first time in days was cathartic. Water as healing. Water as awakening. Water as signals to a new reality. Water as emotion kept so deep and deep the traumatized self, it couldn’t get out, not even a tear drop.
More on Blood clots
On the Train. Again.
I learned on Friday morning that my husband was going to be discharged. It would be easier to take a train than to take another cab. There are express trains to that very hospital, the station being in front of it. I was worried for my husband. I knew he was still weak. To hail a cab meant waiting outside in the snow, and I didn’t know if he could do that. The train was full of people, many unmasked. Someone threw up on the train that we had to move to another car. I didn’t see people. I saw future infected careless passengers. They guy who sat in front of me was too cool to wear a mask, but he was in full aviator glasses and smiling at some other guy was doing somersaults on the train for money. If only I could tell them all what I had gone through. “You think you’re so healthy and cool, don’t you?” I would begin.
My husband was waiting for me in the lobby. The security guard had approached him a couple of times and told him he couldn’t stay there. My husband told him someone was coming to bring him home. I couldn’t understand for the life of me the lack of empathy these people have and how such types could possibly work in a hospital's emergency room. What did he want my husband to do? Wait outside in the snowy sidewalk? I just ignored. It's not that I had become so forgiving of these idiots, I just there were more important battles at the moment.
It’s Been Four Days
We didn’t have a hard time finding a cab. A friendly African with the biggest yellow cab brought us home. I would tip him $20, I decided. It’s been four days in the hospital. As relieved as I was that he was getting better care, I was even more relieved to see him next to me on our way home. I had a big shopping bag with food, snow boots, scarf and extra masks. As it turned out, he was warm enough with his clothes. He must be very hungry, I thought. He once sent me a picture of his hospital lunch, which he forcefully ate although he hated it. He had a lot of Pupusas at home. He would finish those in one sitting. We got home faster than when we went there.
The first thing he did was go to the bathroom and take a shower. While he did, he started coughing aloud. I panicked and ran to the bathroom and told him to finish up and come back out. He said he was okay. It must have been the steam. I asked him to take his oximeter immediately to see if his oxygen level changed. He was normal. We continued our practice of him taking his oximeter and temperature, taking a picture with his phone, and texting them to me. I continued monitoring them and writing them down. That went on for two more weeks. The fever didn't come back.
It didn’t stop us from being careful. I still kept my PPE on. I was the risk now. I never heard back from the hospital, and that might mean I was negative. My husband continued to be stable over the weekend. Hospital staff called him every day since his discharge to check on him.
On Monday, a few days after he was discharged, I woke up with a fever. I had taken Tylenol before bed because I didn't feel okay. I kept my own issues to myself. No need worrying him. I took another Tylenol when I woke up and immediately checked the Covid19 testing schedule in the CityMD nearby. I ran to the testing site at 8:30AM. I didn’t get in until almost four hours later. It was a critical day, because if I were infected, it would have happened the week I took him to the hospital when I was most vulnerable. Since the hospital never called me, I assumed I was negative when I tested with my husband.
The new test came back negative, too. For now, I was safe. I was probably psychosomatic from the stress of the past weeks. The fever didn't come back, but I kept the thermometer forehead scan next to me and started monitoring myself as well on a daily basis.
Our holidays would be different, quiet, recovering both from Covid19 and the trauma it wreaked upon us. I took time off from work so I could take care of him more closely. My whole family was happy to know he was home. It’s been a really delirious two weeks, and it wasn’t over.
Time line check: Friday discharge was a week after he tested positive for the Virus.
Return to PPE
To wear PPE at home was to survive. I mentioned in the beginning how we OCD prepped. I brought that up earlier because in a war against this unseen enemy, you don’t have a choice but to be very conscious of everything around you. These days, NYC has been more relaxed. I also see a lot of people outside without masks. All kinds of people. I am almost certain they are not as informed about the risks they are taking, nor are they aware of what might happen to them when and if they get infected. As someone who writes about wars, and having come from a war-affected family, I know that if these people could see the enemy (tanks, soldiers, etc.), they would be acting differently. Perhaps it’s the way some brains work. Or perhaps it’s religious fanaticism. Perhaps disinformation. Because they can’t see the virus, it must not be there.
For four days of his hospitalization, I only wore a mask at home. I also cleaned, sanitized our space, and took all his beddings and blankets to the laundry (my laundry process is a whole new article to write about). When he came home, I took out the PPE my sister left me, and started wearing that as well. My DIY one was a yellow raincoat with a face shield that I wore once to go jogging. It immediately fogged up, so I never wore it outside again. But it was extremely useful as a PPE indoors. I always did a combo of disposable plastic gloves, my PPE, and multiple pajamas that I interchanged daily. It was an intense practice that I eventually got used to doing. It was important for me to understand that the unseen enemy was at home, millions of them possibly floating in the air. It was important that I could easily touch them and accidently move the virus to my space. I read about how long viruses stay on surfaces as early as March. I sent those images to my family as well. I had perfected the art of washing my hands like doctors do. I have gallons of conditioning hand soap. Soap, I told my husband once, was our best friend. In the absence of soap, the sanitizer was our second best friend. I always carried a hand sanitizer in my back pocket and used it a few times when I’m outside.
During this exposure, I had stayed negative, not for my health but for the extreme caution I put myself through.
2021: The Year of #Hope
By early January, my husband decided he was strong enough to wait outside in line to take another Covid10 test. He had not had any symptoms for over 12 days by then. The doctors who checked on him by phone had told him that he was no longer contagious. But he just needed that extra confirmation. Unfortunately, sometimes, even when one is already in post-Covid19 recovery, that person continues to test positive. When I took another test, I waited outside for four hours. I asked him if he was sure he was strong enough to endure the waiting. Where we lived, the line was literally outside on the sidewalk. You are exposed to the elements, and it’s winter. It took him three hours.
My husband new test came back negative. That was a big step. We could relax a little bit at home. Our home would look a little less than an ICU unit. When he got home, he cleaned the whole apartment and threw everything he used when he was sick into the garbage.
It’s been weeks since the beginning of our ordeal that began on my mother’s birthday week. It was around this time I first shared my experience on Facebook. Nobody knew except my inner circle what we were going through. Facebook of course is the great façade. We are made to believe we know everything about everyone judging by what they choose to present themselves to us.
We celebrated Christmas in January. We didn’t really have a holiday, although we were both not working. I took time off from work to take care of him. I had planned to buy him gifts the week he got sick, so I had to go to the store after the holidays. Physical gifts of course are superficial and ephemeral things – but they always look good in pictures, especially if the ones exchanging and laughing and smiling have just survived a long traumatizing ordeal. When my Aunt passed in May, we didn’t have any rituals. We had to find a Catholic priest to do the last sacraments with her. Even that was a challenge. Although I am no longer religious, I respect and understand the need for rituals. I understand more now what they matter so much to people. What I went through for a month with Covid19 in our home were rituals, albeit small and personal. I chose to be very cautious, read everything I could about the virus, and prep ourselves for its possible visit. I had everything from N95 masks to face shields to filters for our cotton masks. I no longer tell people to buy masks. I used to do that in the spring of 2020 at the height of Covid19 in NYC. What people do is their business. Our world has revealed that worst in us in 2020 – a rising presence of religious extremists and conspiracy theorists amid ever increasing death rates of Covid19 patients. I have learned I am really not here to convince you or anyone on what you have to do. If you have gotten this far, and not learned a thing or two about our experience with Covid19, well, that’s your business, too. But this is our story, and thank you for reading. Stay safe and healthy.
(What we were wearing were his Christmas gifts. I normally dressed as Santa. Now it was his turn to dress me up. And yes, I bought him more masks. I just couldn't help it.)