“I Almost Died.” COVID Survivors From 5 Generations Speak Out.
The pandemic seems to be slugging us through a serpentine game of numbers.
On August 9th, the U.S. surpassed 5 million cases – the most of any country in the world. New statistics also challenge our earlier understanding regarding who the virus targets and at what temperature: At least 97,000 children tested positive in the last two weeks of a sweaty U.S. July.
The U.S. coronavirus death toll is now over 170,000, according to John Hopkins. We know the U.S.’s older population has been most devastated by the virus, but we were too quick to believe in some virus-resistant fountain of youth: About 600 young people, infants to 20-year-olds, have developed an inflammatory syndrome linked to Covid-19, reported the Centers for Disease Control and Prevention. Dr. Anthony Fauci has warned of long-term effects of COVID-19 in young people.
There are so many numbers. It’s a way to keep count, to measure, to maintain a sense of order. But when reading COVID-19 obituaries, we are reminded to go deeper than the numbers and care. Care about stories. Care about the stories that didn’t have to end. The Washington Post on Mark Urquiza’s obituary: “The searing tribute encapsulates the fury of critics who say governments at multiple levels are failing at their most basic duty: keeping citizens safe.”
Here at Rantt Media, we thought we’d add to the numbers with real, personal accounts. We interviewed 16 people across five generations who have survived (and are surviving) COVID-19. They come from all over the United States, with two stories from England, and one from the Philippines.
We published their stories in their own words. These survivors delivered detailed accounts of their grueling struggle with COVID-19 and its longer-term effects, discussed COVID-19 testing debacles, critiqued the government responses, and gave advice to others who aren’t taking this seriously. Some interviews were slightly edited for grammar and clarity.
This is what we asked them:
- What was it like falling ill with COVID-19?
- What do you think of your federal and local government response?
- What advice would you give others now that you’ve gone through this experience?
The generation classifications are based on Pew Research Center’s definitions. Some stories are longer than others, so feel free jump between generations using the table of contents below:
Gen Z
Malia, 23 (Gen Z), Los Angeles, CA
What was it like falling ill with COVID-19?
Up until March 2020, I was living and working for a gap year program in NYC. With the spread of COVID, our program was canceled and my live-in position as the gap year students’ residential advisor became obsolete. The building the students and I lived in was temporarily shutting down, so I decided to come back home to LA.
The minute I stepped out into the fresh air at the arrivals section of LAX I felt a heaviness in my chest. At first, I thought I was just experiencing the normal body weirdness after a long flight but when I got home, I took a shower hoping an allergy pill and a steamy shower would make me feel better. It did not. For 2-3 days I experienced a chest tightness like never before.
After the third day, my chest pain slightly subsided but then came the high fevers, the waves of the strongest chills of my life, loss of appetite, and the racing heartbeat. To be honest, the worst part of my COVID symptoms was the forever 1) racing heartbeat and 2) the tightness in my chest. I probably slept about 3-4 hours a night for the 2 weeks I was ill because those two symptoms kept me up all night. All I wanted during those two weeks was a good night’s rest.
After one week of being ill, I had to visit the ER because my symptoms were not improving. Along with being positive for COVID, they diagnosed me with community-acquired pneumonia of the left lower lung. They sent me home with antibiotic pills but 2 days later I returned to the ER because my fevers were getting higher and higher. Sitting alone in a sealed ER room the doctor came to the glass door with a whiteboard and scribbled the note “your pneumonia is getting worse”, “we need to keep you here for a few days”.
I was scared that my pneumonia wasn’t disappearing but simultaneously I was thankful that I would be receiving IV antibiotics to help me. It wasn’t until I was settled into my hospital room that I broke down and started to cry. I sent a message to my friends asking them to pray for my health because at this point in March so many people were dying every day. I’ve had asthma all of my life and I just came home from the US’s hotspot so I was very nervous about my journey ahead.
After being released from the hospital I immediately felt 70% better and was able to sleep again! I’m not sure if COVID damaged my lungs but now I have to take my asthma medications more stringently and more frequently than before I got sick.
What do you think of your federal and local government response?
The hardest part about my COVID journey was dealing with different protocols and information. After leaving NYC I went to LA to stay with my family but my doctors were located in SF because that is where I lived before the temporary NYC assignment. I had to juggle video appointments with my doctor in SF with LA testing and care protocols. At that time it was particularly hard to figure out where to get tested and where to seek care because I was not a resident of LA.
During this time I applauded Eric Garcetti’s response to the outbreak with a strict stay at home order and closure of non-essential spaces. The federal response seemed to leave too much room for each individual governor to decide as some states never imposed stay at home orders. We’re now seeing spikes in those states.
To this day I am the only person out of my different friend groups to have tested positive and to have been hospitalized for COVID complications. It truly felt bizarre to be so young and be afflicted by such a complicated virus. My advice to any young person out there that falls ill with COVID or any other similar sickness is to try and not let the sickness break your spirit. I had to turn off the 24 hour COVID news cycle in our house and on my devices for the sake of my mental health.
What advice would you give others now that you’ve gone through this experience?
Watching the death toll tick higher and higher each day on the news made me more and more paranoid about never recovering, so I decided to put positive energy and hope into my creative outlets. Once I had enough energy to type again, I went back to writing and sharing stories on my travel Instagram @alikaadventure.
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Millennials
Brittany Chavez, 27 (Millennial), OK
What was it like falling ill with COVID-19?
I underestimated the illness, but I just kept getting more and more sick. I ended up with neurological issues and was in bed for over 10 weeks.
At the beginning of this year, I was on no medications, and I was at the gym 4 or 5 times a week. Now I have to take it easy. I get winded walking across my house. My heart was damaged from the virus, and I’m on heart medication.
What do you think of your federal and local government response?
I don’t think the local government did enough for our community. The leaders downplayed the risk and have been dragging their feet on speaking with the community about mitigating risk and wearing a mask.
Our federal government helped with extra benefits, but they have been cut now. My husband is without a job and I’m working now even with my health problems.
What advice would you give others now that you’ve gone through this experience?
If you develop COVID, seek medical help, and rest as much as you humanly can.
Alyssa, 30 (Millennial), New York City, NY
What was it like falling ill with COVID-19?
My name is Alyssa and I’m 30 years old, I started off March with the flu which turned into bronchitis. Since I was so sick, I was home, and watching the market halt and infections first arrive in New York.
My husband and a small group of his coworkers all became ill, and at that time (March 16) there were no tests available for us here in Queens.
He had a fever and cough for 3-4 days. My bronchitis cleared up and then I became ill with COVID (at the time we were unsure, but antibody testing in May confirmed we both had COVID).
I had the less typical symptoms at the time in March. Nausea, diarrhea, loss of smell and taste, headaches, eye pain, body aches. I never had a fever.
Since I was sick so early on, there was very little information out there and mass hysteria. It was very hard mentally. I shut off all news and social media notifications and did a lot of meditating and journaling.
What do you think of your federal and local government response?
I think that Cuomo has done an excellent job in his response and he really led the state with his strict shutdowns, which allowed the numbers to drop significantly. I have never been more disappointed in the federal response. Over months we’ve seen how something as small as wearing a mask has proven huge results in limiting the spread, and our federal government refused to lead the nation by urging citizens to wear masks. As a COVID survivor and long hauler – I still wear my mask every time I go out, for others, not for myself – I have antibodies, but I understand the importance of thinking of this collectively – that we are protecting each other.
What advice would you give others now that you’ve gone through this experience?
The advice I would give others would be to try to remain as calm as you can if you start feeling symptomatic. Isolate, meditate, and get lots of rest. Your body needs all the energy it can get and amping yourself up takes away from that essential energy.
Reed, 32 (Millennial), Mobile, Alabama
What was it like falling ill with COVID-19?
I have thought long and hard about not posting this…. but I feel like people need to be aware of this virus and how serious it can get.
July 10th, I woke up at 1:30 am with a 102 fever, freaking out. I knew exactly what I had; my mom came rushing over. Usually, when I have fevers I cannot walk with my autoimmune disease. That afternoon I went and got tested for COVID. I had fevers on and off until that Tuesday. Also Tuesday afternoon, they called back and told me it was negative. Wednesday morning I felt worse like a train hit me. I couldn’t break my fever nor breathe, and I started to cough.
I went back to urgent care and sat for an hour and a half in the waiting area, then decided to go to a different one.
They took me back immediately and took an x-ray. I ended up having pneumonia and got retested. At this point, they knew I had it and I knew I had it! I literally felt like I was dying that whole night and into Thursday and Friday. Still not breaking my fever and being able to breathe. Come Friday night, I ended up going to the hospital. I had a whole church praying for me at that point. I was terrified to be left alone in the hospital. They ended up giving me a higher dose of steroids and sending me home because my oxygen was over 90%.
I was absolutely terrified they didn’t keep me. After being on the steroids Saturday night, I felt a little better. My fever finally broke and I could manage it with Tylenol. Sunday and Monday, I literally just laid there and felt like a zombie. Monday, they called and told me I tested positive for COVID-19. Which we knew that I most likely had this whole entire time.
Tuesday, all morning I had a high fever of 103 and had weird hot patches all over my body. I broke the fever and it returned later that evening. The next three days were complete hell…I thought the pneumonia was back. I called the urgent care and they prescribed new antibiotics. For the life of me, I could not break my fever for three days. It would go down to 100.7.
I finally broke the fever and it stays at 99.9 as of right now. But I’m here to tell you it’s been a roller coaster ride. I have been extremely fatigued, no taste, no smell, my eyes are extremely painful, my gums have bled, my left lymph node swelled up, the worst chills of my life, muscle aches and cramps, and constant shakes. I was nauseated and sick to my stomach the entire time!
I literally would text my friend to tell her church to start praying in the middle of the night.
Saturday morning, I woke up and I could finally breathe. My back, abs, and chest feel like they are bruised severely. I have a low fever twice Saturday. July 26th and I finally went a day where my temp was only at 99.9. I can walk to the couch, get a drink, and not much more. I am winded and completely exhausted. My left side of my face started tingling and went numb along with my tongue.
Come August 5th I had a low-grade fever once again and could not breathe. I went back to urgent care and they x-rayed me once again and sent me home with inhalers, antibiotics, and steroids. My bronchitis never cleared. I felt decent enough to go to my Mom’s house and take a shower and get dressed. They told me not to come back if I didn’t feel good again, that I needed to go find a primary doctor. They also gave me a card for a pulmonologist that I needed to see right away. I have permanent damage to my lungs. I do not have any insurance and no primary doctors are accepting new patients right now. I feel absolutely lost in this mess. These doctors have no clue what to do or how to treat this virus.
What do you think of your federal and local government response?
I think the government is failing some of us with assistance. I applied for unemployment and PUA money back in March and did not receive it or qualify. I went for 12 weeks without pay then. I have been out of work now for five weeks. I applied for unemployment that first week because I knew I would be sick for a long time and I also got denied once again. I’m a single mom with no help or income, who cannot return to work with symptoms.
I’ve had to use my savings for medicine and doctor visits… I’m out of it. What if this continues or I get it again? There’s no help for some of us and it’s horrible!
What advice would you give others now that you’ve gone through this experience?
My advice…sadly, I honestly do not have any. My only reason is because I know so many people that have gotten the virus and it’s different for everyone.
Wear the damn mask! Just because you think you won’t get sick with it doesn’t mean someone like me with lupus/RA/fibromyalgia won’t die from it. I guess I do have one piece of advice and that is to pray. Pray hard because some of us are fighting for our life mentally, physically, and financially. COVID has almost ruined my life.
m, 32 (Millennial), Louisiana, USA
I am comfortable with being identified by “m” due to the employer I have.
What was it like falling ill with COVID-19?
Falling ill was a nightmare. I lost my sense of smell, taste, and I ran fevers that would break yet restart. I was confined to my home, I couldn’t enjoy my courtyard due to neighbors. I had hell checking my mailbox. I live in a two-story condo building. The neighbors have begged me to sell. They are the most inconsiderate people during this time frame. In a nutshell, I felt like an alien, everyone hated me. This was not something I could prevent; due to my career, I am on the front line.
What do you think of your federal and local government response?
The federal response was already late. We had the virus here, I believe that if you were brought back, they should have kept you in an area similar to Area 51 for 30 days. The local government in Louisiana wanted two more parties. They threw New Year’s Eve and Mardi Gras for everyone as if it was the end of the world. They were caught just like after Hurricane Katrina: “not prepared”. It has gotten slowly better in response, yet they ignore issues, play favorites, and move around on eggshells.
What advice would you give others now that you’ve gone through this experience?
My advice would be to wear a surgical mask, and a second mask that you can buy online. I’d also suggest that people wear a face shield. Sweat, it’s worth it.
Furthermore, I’d suggest not wearing gloves, and washing your hands. I believe that we should limit what we touch, and sanitize our carts and hands upon entering or leaving a store. I think self-checkouts are the devil – we should use Apple Pay to avoid touching the pin pad, cook at home, and drink water. I also had extreme complications from over-using Lysol, bleach, and cleaning supplies in my home. My smell was eliminated yet again, along with taste. Be careful how much or when you use them.
Last piece of advice: if you don’t need to leave home…don’t. If you pump gasoline, that’s appropriate to use gloves. Exxon has a mobile app that prevents you from touching your card and the pin pad. Avoid going to the gas station. Also, dating, day-drinking, and socializing should be on hold.
C-Styles, 35 (Millennial), Brownsville, Texas
What was it like falling ill with COVID-19?
It felt surreal at first; I had lost sense of taste and smell but thought it was my allergies acting up. I was in denial about it because I’ve had that happen to me before with allergies. It wasn’t until I played basketball with my son that I felt so fatigued and out of shape. I was shocked because I’ve never been this tired playing for 5 minutes. When I’d wake up I felt as if the world was on me – any little task was hard for me, like making breakfast or walking from one room to the other.
What do you think of your federal and local government response?
Both federal and local responses have done a terrible job at handling this, not being strict on protocol with quarantine and social distancing. We had open bars here in Texas in the middle of the pandemic till they finally forced them to shut down, and they are about to start school.
What advice would you give others now that you’ve gone through this experience?
My advice is to take this virus seriously because it’s like Russian roulette. Just because you’re young does not mean you’ll survive this, as I’ve had friends that have passed away from it in their 20s. We still don’t know the long term effects, so I’m living my life as if I have 10 years left.
Elly Shirkhan, 39 (Millennial), Richmond, England
What was it like falling ill with COVID-19?
I almost died from this virus and was sick for 5 weeks in total. I am not so blessed and grateful to have been given a second chance in life. I’m not gonna waste it by being scared all the time. Now I live life to the fullest and tell everyone I love how much they mean to me.
By the way, the biggest issue that no one is talking about is the mental health issues after having the virus. I’m suffering from trauma and PTSD and horrible anxiety. I have nightmares from being in isolation for 3 weeks. I’m on anxiety meds and can’t function properly so I can’t work. I lost all of my stamina and muscles and gained weight due to this bloody thing. I used to train and teach Brazilian jiu-jitsu for 3 hours every day, 6 days a week, so I was very healthy and don’t even know why I got it. I was so scared to leave my house for so long – not to catch it again, but that I might give it to someone.
What do you think of your federal and local government response?
My government responded very lovely, and I am forever grateful to the National Health Service (NHS).
What advice would you give others now that you’ve gone through this experience?
The advice I would give others is to be safe and act with common sense, but don’t go over the top, because we will all get it. Don’t lose hope and try to be positive and you will best it like I did.
Generation X
Nurse Apple, 50 (Gen X), Oregon
What was it like falling ill with COVID-19?
So, I accepted a job. I was doing home health nursing, which primarily involved wound care. I visited folks who were homebound, and visits would take a minimum of half an hour and we did have a couple of really complicated situations where we would be in the home tending to their needs for as much as an hour and a half. We had one situation where we had to be in a home for close to two hours, three times a week.
In that time, being in people’s private homes – of course, we were using the personal protective equipment that was required-but it just realistically wasn’t adequate for this.
So, the hospital that the home health was based out of was located in Oregon. There was one other travel nurse that was filling in, and we were all over the place, so I would be driving sometimes between 70 and 90 miles per day, visiting private homes in far reaches of this vast and rural area. Minimize contact and minimize what you’re bringing into the homes was just impossible. That was largely because of staffing.
In the community, there’s a lot of Trump supporters. There’s a lot of non-believers – that COVID isn’t real or that it’s pretty much just like the common cold and what we need to do is just be out there, developing our herd immunity. Just a lack of understanding of what the actual science is. This community had never seen anything like the impacts of SARS, or other things like that, and it became a massive political battleground area for the state. I ended up leaving at the end of July.
So part of the protocol was, in the office area where we were – they tried to keep workstations. Separate, keep us all at least six feet apart, but that’s just really hard and it was a small crowded clinic area. We were also required to take our temperatures once a morning and record them and send that information back into the home office, which was a half an hour away from the temporary office that I was in. And we did have guidelines for the hospital that looked over the home health services, what their guidelines were.
Problem was, that in order for us to be triggered to self-isolate, stay at home, get in touch with employee health and possibly seek testing, they were only going by if you had a fever. Fever, shortness of breath, or cough. And those are the primary things that they were looking for.
I became sick pretty suddenly. It was very, very hot and sometimes it was hard to tell if things are allergies or whatnot, but there was just something a little bit different that was happening with me. Primarily the difference was that I had GI stuff – mild queasiness.
Then, a raging headache was starting to develop, which I learned was the main sort of common symptom that people were having – these just massive headaches that were unrelenting and were not responding to things like Tylenol or ibuprofen.
But the key importance is that I never actually developed a fever. I had chills and night sweats and just felt terrible. I felt enough to know that there was something wrong with me. The last day that I worked, I took my temperature, pretty much every hour because, like I said, it was really hot. It was very hot weather. I was uncomfortable.
And I just wasn’t quite sure what was happening. but I didn’t fit into the guidelines because at that point I did not have shortness of breath. And it just didn’t fit in with the guidelines, with what our employer was willing to want to send us for testing. I did end up leaving early. I did try and call – I let my manager know at the main office, and then I tried to call public health or other employee health to inquire about testing, because I also knew that in the county, COVID numbers were rising.
I was unable to get through to employee health. I ended up leaving a message. I had heard from other staff that there just wasn’t great communication. And so I chose to call the family medicine clinic in the town, which was wonderful. I had an urgent care.
I called them in the afternoon. And what they said was they gave you instructions, obviously that if my symptoms worsened overnight, call for emergency help and get to an emergency department for evaluation. Otherwise, they set me up to drive to their clinic.
I was to be there right when they opened at 8:00 AM and then they were going to come out to my car. That was how they were doing testing, and it was very professional. They had a really great system and again, it was a smaller area. It wasn’t like some of these bigger testing centers you see on TV, where there was just massive drive-thru. It was pretty good personalized attention. First, some staff, like a medical aid came out to sort of gather the information – do your basic vitals and then either a nurse practitioner or a physician’s assistant would come out to, sort of, get done the next deeper level of assessment and then decide how to do the testing from the car. So they ended up testing me for strep throat, influenza, and COVID.
I was fortunate because our county actually had a really wonderful urgent care system and a private lab. I was told that I would get my results within one to three days. I actually got my positive test result that I took myself in for – on my own insurance. I bought it and got that result, within less than 48 hours. I had that information, and obviously had gone ahead and pulled myself from work because it was becoming clear that it wasn’t just discomfort from the physical heat in the working conditions or allergies. Something else was going on.
The mild GI upset. Headaches got much, much worse. A runny nose. And I started having some sore throat at that point early on. I didn’t really develop a major cough or shortness of breath until I was, more into about 48 hours of my symptomatic time. And again, we’re all learning about this disease process. I was living again as a single woman. I’m doing travel nursing, so pretty much completely isolated. My contact had to have been work-related because the only places that I was going to were into patient homes for extensive visits, where oftentimes patient family members were not doing a darn thing to protect – not masking, not doing adequate hand-washing, et cetera. Putting me and the visiting home health staff at risk.
So, like I said, I was proactive. I knew that I had symptoms that were clear from what I had read. It was looking like I did have COVID and I did; my test came back positive and sure enough, I did not have strep. I did not have influenza. As a home health nurse, it was complicated because I wasn’t a part of their regular staff, even though I was working in that capacity, but I was also hearing from regular staff nurses that the hospital administration’s communication was not wonderful for the staff.
It was not good communication. The county health department was not getting the transparency or the timely reports back with detailed information that they were requiring or requesting from the overreaching hospital system. I’m also in charge of the home health for this large rural area, and I didn’t have good communication with them. How am I going to get paid for my sick time?
I had to actively seek out. I know what I need to do to care for myself. So, you know, I’m isolating, for you know, a four-hour drive from my family in a bigger, more metropolitan area. I’m at home with a pulse oximeter, so I could check my oxygen levels my temperature.
I was completely isolated. I did have a landlord who would drop groceries, outside my door, but I had zero contact with anyone. And, I never required any hospitalization. But I was pretty sick. Again, I’m 50 years old and I’m very, very healthy, but I do have a baseline autoimmune disease. It’s Crohn’s disease, which, you know, it’s just like if I had MS or diabetes: it just makes it a little harder for my body to fight things off.
And as we were also hearing that COVID is individualized – not everyone has the same symptoms, or in the same order. And you know, some people have very mild cases. Mine was sort of a moderate case. I did eventually, after the 48- to 72-hour timeframe, lose my smell and my sense of taste, which was sort of just the curiosity questions that people in the community wanted to hear about, as well as county health.
So I was ill, technically the rule for not returning to work. And this is the crucial part that I really am not happy with. It was basically that if I were asymptomatic for a period of three days without the use of any medication – so no Tylenol, no ibuprofen, no Sudafed, no medication – I needed to be without symptoms for three days, and then I could return to work. I never got to that point completely because I was just really – the headaches were the most debilitating part of my personal disease process and just unmanageable fatigue. There was no way that I could work on the required eight-hour shift, with extensive driving. And being inpatient homes at this point – it’s over 90 degrees, without ways to take breaks or stay hydrated or have a clean bathroom.
So as far as what my concerns were as a nurse, as a community member, the other staff that reached out to me, people did have by private texts number. I heard a lot of things.
The hospital system wasn’t being very transparent or, you know, they weren’t being quick with their information and communication with the county health department and their directives to other staff. For lack of a better word, it was shady. They didn’t want staff letting families know about potential possible exposure in their homes. So it was clearly caused by us. It was not just me.
What do you think of your federal and local government response?
The administration was not doing as much testing is I personally think was called for, because we know darn well, you know, that there are asymptomatic carriers. You know, in the small home health group, I was the only one that had enough symptoms that I took it upon myself to go get privately tested. So I’m not “Typhoid Mary” – there were multiple home health staff members that more than likely were either picking up stuff from patient families are bringing it in either way.
There was another travel nurse who was a little bit older. She, a very forthright and Christian lady, was a Republican, but she became very uncomfortable with the way that they were trying to hide me and my symptoms, and not being transparent with the other staff that had curiosities, and shield patient families from any information basically saying, well, patients, families, if they have questions, they can call the county health department for that data. But again, there’s a lack of transparency all the way around.
What advice would you give others now that you’ve gone through this experience?
My overall take-home message for any employee, whether you’re working in a retail environment or restaurant, gas station, grocery store, or in the medical system: We have to hold our employers accountable, especially in a small rural town like this. I’m a well-educated nurse from a large area. I worked in big hospital systems doing oncology nursing for greater than 10 years. I know my union rights, which didn’t apply in this situation, but I have always been willing to speak up, especially to advocate for my patients and my fellow staff members.
Most people are legitimately afraid for their families, their paychecks – they don’t feel comfortable asking tough questions and demanding information from employers.
News outlets are overwhelmed. I’m not a huge tweeter or whatnot, but I would occasionally. And then once I became sick, I didn’t have the energy, but I would occasionally send out like an email or do a tweet and with some basic information and tag NPR staff for the local Oregon public broadcasting. But, you know, they didn’t have time. I’m just one story of many. There’s not a great way to really get communication out there. I’m just glad that I was privately able to go to a wonderful, family medicine clinic with a fabulous urgent care.
It’s been really hectic having to relocate, after losing my home health job. They did finally dismiss me. And then I’ve also lost my benefits, as of last week. I was finally getting worker’s comp pay for COVID illness, but they’ve just yanked all that from me. So now, I’m having to start looking into applying for unemployment and figure out where to, where to go from here. So I think traveling nursing is not going to be an option for me anymore. It’s just too risky as a nurse. I know I don’t have the backup that I would have with the state regulations.
So again, I know COVID has brought about a lot of travel nurses and I think again, no one has time to get into it. But normally as a nurse in Oregon, you have Oregon nurse association protections and state law protections, but travel nursing, as I’m discovering, especially if you’re in a different state – is sort of a wild West. It’s a no man’s land. It’s not really clear what the rules are for staff protection.
But yeah, I’m not shy. I have nothing to lose. I’ve done everything, had to document everything 100%, honestly like I said, to try and get some worker’s comp sick pay. I’ve also wanted to communicate with the county. I wanted to be able to get information from them or for them to get my information. I mean, these small counties are really, really struggling.
Public lack of education, the lack of a knowledge base about a very complicated new disease. People just aren’t getting it. Some of the conversations that I would hear in the grocery stores – people just blatantly refusing to wear masks, politicizing that, and the whole thing about, “I’m not scared, did you catch the fear?”
But, bit by bit, one of the people that I met in the community lost two elderly parents to COVID. You know, they went in for a basic surgery that had to happen, a hip surgery, and then died in ICU from COVID. People often aren’t believing it until it hits them in their own families. And then suddenly, they’re taking a really different look at it.
I had a lot of people reach out to me. I did go back on to Facebook just to kind of update people that were concerned about me, and there was so much just annoying curiosity: “What were your symptoms? What did you do?” And when you’re ill, especially if you’re ill and completely alone, you don’t have time to also be a public health voice and do that outreach. But people are fascinated. I can’t tell you how many people said to me, “You’re the only person that we know that actually had COVID, what’s it like?”
It just doesn’t seem to be sinking into people, and I think this is a huge community problem, especially in rural areas where the cases are fewer and more far between. Communication stinks. People in the media are doing a tremendous job, the best they can, which is why I’m happy and willing to talk to you.
I’m not shy about who I am because I speak the truth and I’m well educated and I’m trying to help. Trying to advocate for my patients and my community members. And, yeah, I’m one of the people that want to encourage better understanding and for people to, you know, listen to Dr. Fauci and play it safe. For goodness sake, play it safe. Err on the cautious side.
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Tim Piccirillo, 60 (Baby Boomer), St. Petersburg, Florida
What was it like falling ill with COVID-19?
My name is Tim Piccirillo. I go by Tim. I’m 60 years old. I live in St. Petersburg, Florida in the U.S.
So what was it like falling ill with COVID-19. My first symptoms occurred on June 8th. And I remember the weekend before, or the day before, I was getting more and more tired, but I woke up with extreme fatigue, fatigue that I’d never experienced.
I had a fever. I had a pretty bad headache at that point and a slight dry cough or I can’t say it was from sinus drainage because I had developed sinus drainage. And, I didn’t know that I had COVID, but within a day or so, I was thinking, yeah, this is definitely, you know, I’m manifesting the symptoms because I would take Tylenol and the symptoms, you know, the fever would break because I was told to take acetaminophen to break the fever and that went off and on, for the next eight days. And that was on a Monday that I developed symptoms. The following Tuesday, I was so sick, I wasn’t getting better. I was getting worse.
So I went to the emergency room by ambulance. It was something because, you know, if I would have been treated a little bit earlier, I think I would have fared a little bit better. This thing almost killed me.
What I did have was an underlying condition. I mean, I did have two underlying conditions. I was aware of the fact that I had high blood pressure. That’s a hereditary thing on both grandfathers and my father has that, but my blood pressure runs in the low/high range, and I do take medication for i., But I also discovered that I had COPD, chronic obstructive pulmonary disease. And, I didn’t know I had that. My doctor didn’t know I do cardio; I’m in relatively good shape. My oxygenation runs around 98% to my brain, so we had no idea. So the thing is, I had all these symptoms and then I went to the emergency room. They gave me all these tests, including an influenza test.
Everything was pretty normal. They gave me a COVID test, sent me home. Two days later, I got the COVID results through an online portal, and I was positive. And that’s when my breathing that afternoon started getting heavy because pneumonia had set in.
What do you think of your federal and local government response?
So what do I think of my federal and local government response? I think in both federal and local, the state of Florida – terrible, horrible, bad, bad, bad response.
First of all, you know what I’ve seen up until I think last week for an entire month? President Trump has minimized this pandemic. We are the epicenter of the world right now, Florida is one of the epicenters – particularly we were getting eight, 8,000 to 15,000 new cases per day. As of last week, I think that it’s starting to flatten a little bit.
They had shut down the state at the beginning of the pandemic, but our governor felt the need to open it, and he opened it up way too soon. And that’s why, you know, I got it, two months ago when there was a surge starting again. So on top of that, DeSantis has wanted to open the schools and he’s ordered reopening, and it got so bad that the teacher’s union here in the state of Florida [Florida Education Association] sued him. They’re going through a process because they just don’t agree with it. They have no plan in place to open the school safely. There is no federal plan. President Trump has, I think, done a woefully inadequate job, based on one reason.
First of all, he minimizes the seriousness of this threat. Florida had as of yesterday, I think it was something like 172 deaths just in this state. So, what I find is that the health care – in other words, the Trump administration will talk, you know, Dr. Fauci, Dr. Birx, who is on the task force, who works right along with them – and if they say anything that does not fit the narrative of what Trump wants, as far as reopening the country, which is way premature – then they’re either chastised or they’re marginalized or, like in the case of the education, if they don’t open schools, Trump had threatened to cut off federal funding.
So it’s unbelievable. Healthcare professionals, you know, if they’re marginalized – in fact, with Dr. Fauci, who is our top infectious disease specialist, has been chastised a number of times. And then there was a smear campaign that came out of the White House just a couple of weeks ago because what he was telling was not fitting the narrative.
[Fauci] was telling, you know, that this thing’s going to continue to get worse. We need to do certain things. And then, also from that political standpoint, our president doesn’t wear a mask. Rarely. We’ve seen two appearances personally, where he wore a mask. So because of that, and it’s an election year, the right, conservatives and Republicans, a lot of them are making a political statement by not wearing masks; they treat it as an infringement of their rights, which is really a stupid thing to do as far as I’m concerned, because you’re putting your rights above the welfare of the populace.So I have a real problem that there’s a continual debate about the effectiveness of masks and it’s been proven time and again that – in fact, the director of the CDC has said time and again: if we simply all wear masks and do social distancing, the curve will be flattened within a matter of weeks, but… there’s things that are so absurd, such as COVID parties, where young people will, there’ll be a couple of them that are infected with COVID and they’ll invite people over knowing they’re infected, trying to get infected.
So this is what we’re dealing with in this country. And it’s frustrating. It’s scary. It’s maddening. I did a Facebook live from my hospital room. I think two or three nights in, when I was very, very sick and people just don’t know the severity of this, this disease. And what happened was that video kind of went viral.
It’s kind of something like close to 25,000 views now, because people don’t know – they didn’t, they couldn’t, and I put a face on it. They didn’t know what this thing was, they didn’t know if it was real. I’m still running into that, where I came from in Pennsylvania, a very rural area. I’m hearing people messaging me, saying they’re still not taking it seriously.
So yes, I think, you know, on one hand, they’re working on vaccines. The government has committed to, if we find an effective vaccine, committed an amount of money to making sure people can get vaccinated. But for the most part, because it’s an election year, I believe that’s huge. And we have a president who minimizes the severity of this threat. So it’s very frustrating there.
What advice would you give others now that you’ve gone through this experience?
What advice would I give others? You know, right now, this virus, they still can’t really track the behavior of it. It keeps mutating – it’s mutated. Where they know it’s more easily transmitted. But it doesn’t make people any sicker. It’s a novel Coronavirus just like SARS. So it’s respiratory in nature. And the thing that got me was the pneumonia. Right, because normally the virus will attack the lungs and why the pneumonia held off as long as it did – I think it’s because my immune system must be good and I have first aid.
So the thing is, it’s wearing masks and social distancing if it scares you. But I have friends that act like business as usual. It doesn’t matter to them. They’re not afraid of getting it because, you know, they’ll say the mainstream media is just, you know, drumming up fear. And it’s not that way at all.
This thing should be taken seriously. There are young people, 30-year-olds, that are passing away with no underlying conditions. There are children getting it now. People of all ages are dying from this. So the problem is that people are minimizing it and it should be taken very seriously because it’s truly a roll of the dice, whether you’re going to get it and how you’re going to get it.
Another thing that stymies researchers is the fact that this bug, this horrendous virus doesn’t make some people sick – they’re asymptomatic. And others, it kills within 48 hours or others, they’ll get it for a week and they die and it’s just very difficult.
It’s a very difficult virus to track its behavior, from what I can tell. What’s going on now with healthcare professionals, from what I understand – they’re getting a handle on treating the symptoms so that your body can rid itself of the virus and. My advice is to isolate as much as you can.
If you go out, definitely wear a mask, social distance. These two things alone have been proven. They’ve been proven time and again, to help cut down the spread and keep you from getting it. This thing is serious. It’s not going away anytime soon.
It’s not a hoax. It is not. I’ve heard every conspiracy theory out there, mostly coming from the right, which is just a deflection of the actual event.
So let’s not deflect from where this is coming from. Whether it’s empowered rabbits and economic reset or whatever the hell it is, there’s a pandemic out here. And there’s a virus that’s killing people and it’s making people – I’ve never been sicker in my life.
Ron Wilkins, 62 (Baby Boomer), New York/Texas
What was it like falling ill with COVID-19?
Having gotten sick with COVID really sucked, especially since I have an immuno-compromised system. I was in a medically induced coma for 32 days, and on a ventilator for 37 days. After that, I spent another 6-7 weeks in two different hospitals recovering and getting my mobility, strength, and coordination back. After that, I spent a total of seven weeks doing occupational and physical therapy (twice a week) to get myself even stronger and healthier. My name is Ron Wilkins, and I’m currently living in Austin, TX, having recently moved from New York City, where I lived since 2012.
What do you think of your federal and local government response?
I think the US national response to the COVID virus has been terrible. President Trump and his administration didn’t move nearly as fast as they should have in getting the proper message out to the American people, and they didn’t have a national strategy in place to slow the spread of the virus. It also doesn’t help that the virus has been made more of a political issue than a national/global health issue.
I think that New York and Governor Cuomo did a decent job of trying to slow the spread, but since I’m now living in Texas, Governor Abbot and his administration focused more on getting people back to work and opening businesses sooner than they should have. Because of that, and instituting a national and state mask mandate, Texas is a hot spot for the spread of the virus, while NY has seen less cases. I’m disappointed in the overall response, and wish the US government would have done the right things to protect the American people sooner, including listening to doctors, scientists, and other world leaders about the virus. We could have applied the proper guidelines for testing and slowing the virus spread much sooner, as well as reduce the number of cases and deaths.
What advice would you give others now that you’ve gone through this experience?
My advice to others would be to wear a mask, continue practicing social distancing, wash your hands regularly, use hand sanitizer often, follow CDC and WHO guidelines, and stay safe. If we look out for each other and ourselves and families, we can slow the virus spread, as well as give our scientists more time to come up with a vaccine that will help.
John & Kathy, mid and late 60s (Baby Boomers), Florida
What was it like falling ill with COVID-19?
My wife first became aware of some mild Covid-19 like symptoms on June 17th. Unlike mine, her immune system could be bottled and sold. She’s that healthy. It started with a continuing headache that she blamed on her staring too much into a computer screen used for work. The next morning though, she also had a sore throat. “Hmm,” we both wondered. I immediately took up quarters into another bedroom and we started to social distance.
Being in our mid and late 60s, and me on medication for some autoimmune disease issues (RA, Sjorgens), we were both as diligent as possible when it came to sanitizing everything in this crazy chaos of COVID.
The following day (Friday, June 19th), I woke with a dry cough that continued throughout the day, and that evening I developed a low grade 99.2 temperature. On Saturday morning I rose out of bed a bit tired from a restless night of periodic coughing, and went to go make my morning coffee. For three and a half months now, that was my personal, go-to COVID test. I would ground the coffee up and take a nice whiff and be thankful I could still smell that flavorful aroma. Well, not this morning.
This Saturday morning, I couldn’t smell a thing. I ran to the shower and grabbed my soaps – nothing, dang it. I started grabbing things from the kitchen: Fruits, cheeses, even an onion. Nothing. Not a scent to be smelt. We struggled the rest of the day with the possibility that we both had COVID.
Sunday morning (June 21st) we’d decided to go wait the four hours at the Orlando convention center and get tested. My wife was a tad reluctant since her symptoms had already cleared up. My cough was getting a bit worse and my temperature stayed in the high 98s to high 99s, which was high for me since I was also taking my temp every 3-4 days.
After our test at the convention center, which was a swab of the throat, we went home and would succumb to quarantine until test results came in. We made pot luck meals and used the food delivery service DoorDash. I practiced some piano, took some photographs outside, and edited wildlife videos. My wife worked long hours every day due to her picking up the workload of a colleague who happened to be COVID positive, and unbeknownst to her at the time, fighting for his life and in a 45-day coma at a New Jersey hospital. He was finally released and actually started back to work recently. Thank you, Jesus!
Fast forward to Friday (June 26th). I had been having chest pressure all day, like someone was pushing in on the right side of my upper chest. After speaking with my daughter, a medical Doctor at the University of Miami Hospital, she calmly but forcibly told me to go to the ER. Fearing the long wait and possible admission, I packed a bag and my music and had my wife drop me off at our new local ER. The waiting area eerily only had one person. Thank God.
I was immediately seen and taken directly to a COVID-only room. An x-ray was taken and the results were negative for pneumonia. I was told I had some bronchial spasms and they suspected I had COVID mostly because I had lost the capability to smell. So I received another COVID test, this time through each nostril, and was told those results would be about 4-5 days. I was also given a steroid shot of the popular drug dexamethasone, an inhaler, and a three day supply of prednisone. I was now on my way home feeling more confident I wouldn’t suddenly turn for the worse in the middle of the night.
We waited anxiously for any of the three test results. My wife’s came on June 29th, 8 days after first being tested. She had tested positive. We finally had some answers. We were now sure that my two tests would also show positive since I’m the one with all the symptoms. I was also developing some brain fog and some short stabbing pains on the right side of my body that could or could not be related to COVID.
The good news though, was that my wife had just passed Florida’s DOH COVID guidelines, which I remembered as 7-7-3 (7 days since COVID test, 7 days since symptoms first appeared, and 3 days have passed since recovery, without using any fever-reducing medications and improvement with any respiratory problem you might have had).
My ER results actually came before my convention center test and on July 1st I received those results. “Negative for COVID”. My wife and I just burst out laughing. My daughter said that the tests are showing around a 30% fail rate and that she’s 100% convinced that I have COVID-19.
I was now really anxious to get the results from my first test taken June 21st. After several failed phone call attempts to the lab that was contracted to test the convention center swabs, I grabbed some hand wipes, masked up, and marched down to their Orlando office. I was immediately told that it’s a completely different lab and I was at the wrong place. “Hold on,” I said. “That’s not true!” My wife received her results from you, and we were both tested at the convention center on the same day. She appeared exhausted and said, “Well, that’s what the trainer told me to say and I am too old to have a reason to lie.”
I was now becoming a bit angry and frustrated. Having gotten nowhere on the phone with them after being on hold a total of one hour and forty minutes over a two-day period, I demanded to speak to the manager. The manager would not come out, but did speak with me on the phone and after verifying who I was. She said that they did not receive my test until June 26th, five days after I was first tested. I honestly didn’t believe her, since I was lied to just a few minutes earlier. But I thanked her and went home to wait.
In the meantime, Seminole County officials called my wife and said we have paperwork here that she tested Positive for COVID-19. They politely told her that she now must quarantine until DOH calls her. They also offered to shop for us if we needed them too. That felt good knowing someone was looking out for you, if you needed it. But, my wife calmly said, “But I have followed the DOH guidelines and I’m OK to go out starting yesterday. The young woman again calmly repeated that she must quarantine and if she is caught outside she could be fined up to $500. My wife, Kathy, hung up the phone and being dumbfounded, just kind of stared at me and explained what this young lady just said. We just started laughing at how odd this was playing out.
Finally, on July 2nd (11 days after my first COVID test) and the first day that I would have met the guidelines to be released from quarantine, I finally received my results, Negative for COVID. “What the @#%&” I mumbled to myself. I was so confident that I had it, that I had called a doctor who was going to perform a minor surgery in early July and told them I had it. They said well in order for the procedure to take place, you will need two negative tests to prove you don’t have it.
Oh, I have two negative tests now I thought. I’m just not sure what it proves.
So now I suppose I can mask up and roam freely with no fear of being stopped by the quarantine police, while my wife Kathy continues to anxiously wait by the phone for a call that might not come anytime soon. Since DOH would not answer the phone and you can’t leave a message, we sent them an email about our confusion.
DOH finally replied on July 5th and said that we should ‘contact our local health department’. Now we are really confused since the local office told us to wait for a call from DOH. In that same email, DOH also changed the guidelines to now 10 days since symptoms first appeared. “When did that change?” I wondered.
On July 9th, DOH called the house and said we were both cleared to go about our business. Both of us? So did I test positive or not? Also on this day, we went back to the convention center to get tested for antibodies. After about a short two-hour wait and an additional 20 mins for antibody tests result, We were both negative for antibodies. Oh darn. We were looking forward to donating our plasma if we could. Unbeknownst to us they also did another COVID test. This one was through the nasal passage.
One week later, on July 16th, we both received text messages for the lab indicating we were negative for COVID. Well…I certainly hope so after all this.
As of August 4th, we are both feeling well, but are left with so many unanswered questions.
What do you think of your federal and local government response?
Both my wife and I thought our local (Seminole) county officials were not only on top of their game with the information they were being given from the state, but they actually seemed to show compassion and would call us and offer to do grocery shopping for us. We declined since we were prepared but knowing they were there if needed, felt good.
From a state/federal standpoint we are just frustrated at all the confusing messages, delayed responses, and what appears to be a total disregard for the safety of our basic public health. It boggles the mind and uproots one’s own convictions that there could either be such a prevalent ignorance about science or willful selfishness towards thy neighbor.
What advice would you give others now that you’ve gone through this experience?
Both my wife and I think it was a waste of time because it took so long to get questionable results that just left us anxious, confused and frustrated.
So the advice we would give is this:
Until such time that they can get more accurate test results and those results back within a day, skip the test if you have mild to medium symptoms and follow quarantine guidelines. Otherwise if serious, go to an urgent care, the ER or call 9/11.
Best of luck Sarah. We hope whatever you write, opens more dialogue and enlightens some, because the way this country is behaving, this isn’t over by a long shot.
August 14th: Just an FYI on our experience. The day after I sent you the last email, I started losing my sense of smell again. By Sunday it was completely gone. No other symptoms. Today it came back with the wonderful smells of ground coffee. My wife was not affected at all and I had no other symptoms.
Silent Generation
Mikki’s Grandpa, 81 (Silent Generation), the Philippines
What was it like falling ill with COVID-19?
My father was diagnosed with COVID right after his father and mother were hospitalized with the same illness. My father was the one who brought them to the hospital and acquired the virus. Sadly, this virus took my grandma’s life. My grandpa and father were fully recovered.
What do you think of your federal and local government response?
They have this government program wherein if you are diagnosed with such illness and got hospitalized, they cover hospital bills. Aside from that nothing else.
What advice would you give others now that you’ve gone through this experience?
Seeing someone you love or even knowing someone with such illness is very traumatic. You get to see them suffer but you can’t help them because you can’t get close to them. It hurts. To everyone, stay at home! It’s a must! If there’s nothing important to go outside, then don’t do it. Save lives through staying at home! Take more vitamins as well, they help boost your immune system.
Gordon & Barbara, 85 and 78 (Silent Generation) through their daughter Heather, Northwestern PA
What was it like falling ill with COVID-19?
My father said he doesn’t really remember falling ill. I remember it started with him not wanting to get up or get out of bed at all; he stopped eating and said nothing tasted good. It ended up with him being sent via ambulance when he couldn’t get to a sitting position and his oxygen level was 75-77. My mother said her experience was more like getting a flu. She started sneezing and had congestion. She doesn’t have any symptoms that are lingering. My dad, however, remains in the hospital after 34 days with pneumonia and is still testing positive for COVID after 4 weeks.
What do you think of your federal and local government response?
[My mom] thinks there is not enough attention being given at the local level to COVID…She feels that no one really knows, not even the best doctors, because they find out new things all the time about how COVID affects people and new symptoms, etc. [She] thinks Trump and the federal government are more interested in money than people’s lives. She believes if the government would have a national guideline for masks, businesses opening and for gatherings, that they could stop the spread. She hates Trump and thinks he let the virus go so long without acknowledging how bad it was, wants to kill off the elderly but it backfired.What advice would you give others now that you’ve gone through this experience?
The advice that my mother says is of course to wear a mask, but to recognize the common cold, flu, etc. is not going around anymore so if you are sick at all stay home, and especially to healthcare workers, don’t get lax and think COVID is over. The hospital where it is believed my dad and I contracted [the virus] wasn’t doing temperature checks for any visitors, so who knows if staff was getting them done.
[My mom says] to pray and pray that this never happens again to anyone…she is 78 years old and never saw anything like this in her life. She said it would have been better if we had a president in the beginning that would have told the American people about the severity of the pandemic. [She says that it] also has been extremely hard watching her husband of 55 years go through COVID. Even worse than when she had cancer and he had quadruple bi-pass surgery twice.A note from Heather, who thinks she also contracted Covid-19 on a trip to the hospital with her father:
Another thing that I don’t think a lot of people realize is how COVID can affect people long after testing positive. It has been 4 weeks and I am still suffering with exhaustion/COVID fatigue…COVID has dominated all of our lives over the last month – month-and-a-half and it still is. Thank you for getting my parents’ story out there. The people that think COVID is fake or not that bad are getting it horribly wrong and contributing to the spread…
Harry, 94 (Silent Generation) through his son Paul, Lancashire, England
What was it like falling ill with COVID-19?
To set the scene, my father lives in Lancashire, NW England. He was showing symptoms of early-onset dementia before being admitted to hospital with bacterial pneumonia in March. At some stage after his admission to the hospital, he tested positive for C19, and his health was reported as poor. He recovered from both the initial pneumonia and the subsequent C19 infection and finally had two successive negative results in June, whereupon he was released.
What do you think of your federal and local government response?
However, his experience as a non-critical patient of the UK’s NHS was less than satisfactory, with poor communication, a period in which he was ‘lost’ in the system and evidence of poor patient care and unnecessary tests for minor ailments inwards with significantly fewer patients than normal. The net result was a rapid deterioration in his dementia over the four months of his isolation, to the point that he no longer recognizes family members.
For this reason, it is impossible to ask his opinion (or seek his consent for this submission). It is not possible to determine whether he has made a sufficiently complete recovery to place him in the same physical state he was in at the beginning of the year, or to say whether his mental deterioration was due to C19 or his experience as a non-critical patient of the NHS.
I am no longer a UK resident, but I have observed the calamitous response to the C19 crisis with dismay and deep concern for my own family, some of whom are nurses close to retirement and fearful of their own susceptibility. The UK evidently lacks either a structured or transparent medium-term plan and the ‘too little, too late’ political response seems to be evidenced by the disproportionate and unbalanced death toll.
What advice would you give others now that you’ve gone through this experience?
It is difficult to offer advice on the impact or effect, but I would draw attention to the fact that a 94-year-old male with a long history of respiratory disease not only survived C19 but also emerged with little physical evidence of damage.