itsnotjusttheflu

By Sarah May

Back in late January I developed a “respiratory infection”. My memory of the time is now a bit fuzzy. I'm not sure if it's because of the illness, because everything has been so disorienting since,or because strangely, I fell madly in love right after. Last January and February many people in the area I lived had been coming down with a “bad cold”, “flu”, etc. I live in a suburban/rural area and Covid was still a new idea thought to be somewhere else. I remember getting sick and thinking I would take a couple days off and feel good enough to go back to work in a couple days like I had when I got sick the previous year. But I felt so much worse this time.

I went to urgent care where they diagnosed me with “respiratory infection”, offered me antibiotics and sent me on my way. A week approached and I convinced myself I should go back to work. I guzzled Dayquil and it barely made a difference for more than an hour. I even wore a mask long before they were implemented because the coughing would not stop. I worked in a store and I had told my supervisors how ill I was but they didn't seem to believe me. They kindly condescended to me that I would feel better soon but I did not for a while. It would seem to subside then come back on strong again. I coughed and coughed until my stomach and lungs ached. I doubled over in pain, the cough still rising from my chest. That ache in my lung was one of the last things to leave.

Vertigo and fatigue set in that made it hard to shower or move from room to room. I'm in my 30s, live alone and come from a family without much sensitivity to others. I learned to “deal” and “push through” some of the most harrowing experiences of my life by myself. I also live in New England where there seems to be a fetishization of suffering silently. As I lay alone in my apartment, I distinctly remember trying to joke with friends, family, or the man who would become my boyfriend...“Might be dying guys.love you...I think my lung might have collapsed...Should I go to the hospital?.. When do I call an ambulance? Haha...ha.” Vaguely texting into the void, I worried quietly about not seeing any of them again. Getting better was gradual. A light cough and fatigue hung around for a while. Again, my memories from six months ago are a bit scrambled at this point.

I now think mine was one of the early cases. I am getting an antibody test. It was a month later when I was laid off from work and quarantine began.

In a side-note, my co-worker, an elderly woman, became ill not long after me. She was almost incapacitated . She is a beautiful person who had been kind and generous to me. She also had some type of spirituality that made her avoid doctors,medicines that weren't natural and believe that becoming ill was a part of some grander spiritual plan. She kept assuring everyone that she was alright and on-the-mend, but as of this writing she is still recovering. Six months later. I carry a lot of guilt that I might have been the one she caught it from. That I might have spread it further in those early days before we know what we do now. And wonder about how things might be different if we had the proper information in due time.

I can say most things I was doing before have gone or changed drastically. The relationship I mentioned has progressed through the bizarre filter of quarantine. I wonder if maybe I had been more open to it due to the fear and solitude I experienced during my illness. I have more money from unemployment but my depression and anxiety have become overwhelming. Routine and staying busy were my coping mechanisms. Any plans I had have been postponed or deviated...possibly for the better. But who can say at this point?

By Jon

I just finished a 10 day working 12-14 hour days in my hospital's COVID ICU. I couldn't go one day without intubating someone. I couldn't go one day without asking my nurses and respiratory therapists to prone a patient to try and get them to breathe. I couldn't go one day without having a heart-and-soul wrenching video conference with a family, telling them their loved one was going to die despite everything we were doing. Every night I would walk out of the hospital, sit in my car, stare at my steering wheel, and sob. And then, after all of that, I see people all around me who still have the audacity to downplay, underestimate, and trivialize a pandemic that continues to spread illness, suffering, and death throughout the country. And doing so with no insight that the very ability to minimize or outright deny this is happening is a luxury that neither I, my fellow physicians, nurses, respiratory therapists, pharmacists, physical therapists, and most importantly the 151,077 (and counting) Americans who have died from this, get to have.

For those of you that point out a declining mortality rate is reason to disregard it, all I can say is, of course it's going down. After the entire world has seen over 17 million confirmed cases (again, and counting) over the past 6 months, my medical brothers and sisters and I have had no choice but to rapidly evolve and get better at managing this disease under the most dire of circumstances. Calculating a mortality rate is an incredibly complicated thing to do, and is continuously affected by countless things: our understanding of medical management like timing of intubation for respiratory failure, prone positioning, using medications that have actually shown benefit in prospective randomized controlled trials and avoiding medications that have not passed this standard, population behaviors like staying away from large crowds and properly wearing masks (yes, just putting a mask on doesn't mean you're doing it right), regional hospital bed availability and capacity to take new patients, availability of rapid testing, to name just a few off the top of my head. In fact, if the mortality rate was not going down that would be absolutely terrifying. That would mean that no matter what we've learned or what we try, our efforts have been completely ineffective and this disease is going to kill the same percentage of people no matter what we do. But that is the beauty of modern medicine; when done properly we have the capacity to learn, improve, and save lives that otherwise would be lost.

I think it is also important to point out what a mortality rate doesn't take into account. It doesn't take into account the morbidity and mortality of other diseases and conditions that are affected when a medical system becomes strained. Every other condition that leads to critical illness and death is still happening and needs care. It's not like hospitals are trading other ICU patients for COVID patients. We are having to taking care of heart attacks, strokes, septic shock, kidney failure, liver failure, traumatic injuries, and everything else an ICU does PLUS the added number of COVID patients. So having a 60 bed ICU doesn't mean you have room for 60 critically ill COVID patients. In fact, most major ICU's in this country run at 80-90% capacity ALL THE TIME. So even if elective surgeries and procedures get cancelled in an area, it's important to understand that there is not a lot of capacity to handle a surge of patients. And when that capacity gets overwhelmed, you can reliably expect that not only will your COVID-related mortality go up, but every other condition that requires critical care will as well.

While we're on the subject of percentages, let's make a few clarifications. In our everyday lives, I understand that 1-5% seems really small. But PLEASE understand that what counts as a large percentage in medicine is completely different. Medicine is not everyday life. It is exquisitely complex. Seasonal influenza usually has a quoted mortality rate of 0.1%. So even at the lowest estimated mortality rates right now, a group of COVID patients is dying at 10 times the amount a similar group of influenza patients does. It is also important to ask, what is the absolute number that the percentage is being applied to? 1% of 100 people is 1 person. 1% of 1 million people is 10,000 people. 1% of 370 million people (roughly the US population) is 3.7 MILLION PEOPLE. And to anyone who doesn't think that could happen, all is can say is, what evidence do you have? This virus has done nothing but spread to any place it has available to it. It spread from a single Chinese province to every single major metropolitan area in the world in less than 2 months. The US continues to post 60,000-70,000 new cases per day. There is not a single shred of evidence to suggest that will change unless we make it change. Everyone needs to understand that this virus will continue to infect until it has nowhere to go, either because it has infected everyone (see the above scenario to see how that will work out), it is cut off from a supply of new hosts (distancing and masks), or everyone it comes in contact with is immune (immunizations, which as yet do not exist for COVID and in the best case are still months to years away).

When it comes to properly interpreting studies, data, claims by people on TV, I get that there is an enormous amount of data circulating and that it is overwhelming to try and figure out what is true and what isn't. I would be wary of anyone claiming to have “absolute knowledge” or “found a cure” or “this works in their personal experience.” This pandemic continues to humble me over and over again, and I've spent 4 years of college, 4 years of medical school, 3 years of Internal Medicine Residency, 1 year as chief resident, and 2 years of Critical Care Medicine Fellowship (roughly 35,000 hours of study, training, and clinical practice) to try and be ready for something like this. For anyone that doesn't have a similar background, I wish I could make this simpler, but I can't. This is complicated. Being able to have a truly informed conversation about this requires knowledge of concepts like Ro (R-naught), ID50, Absolute mortality, number needed to treat, number needed to harm, sensitivity, specificity, positive predictive value, negative predictive value, droplet vs airborne transmission, pharmacokinectics, drug clearance in renal and liver failure, why prospective blinded placebo controlled trials are the Gold Standard and why retrospective studies are so limited to the point that they by definition cannot establish a cause-and-effect relationship, the difference between a statistically significant and clinically significant result, identifying clinically relevant endpoints in a study (mortality or time to clinical improvement, as opposed to viral clearance with no regard for patient clinical status), basic and advanced respiratory mechanics, identifying impending respiratory failure and properly timing intubation/mechanical ventilation, pathophysiology of exudative vs fibroproliferative phases in ARDS, calculation of ventilator tidal volumes based on Ideal Body Weight to prevent ventilator-induced lung injury, proper titration of PEEP, limiting ventilator pressures and understanding the difference between peak pressure and plateau pressure, permissive hypercapnia, preventing hyperoxia, appropriate use of neuromuscular blockade to prevent ventilator dyssynchrony, the benefit of prone positioning and understanding how long to leave someone prone, preventing complications of critical illness in particular venous thromboembolism and choosing appropriate anticoagulation agents, recognizing secondary bacterial infections and treating with appropriate antibiotics, managing volume status and diuresing appropriately, performing adequate spontaneous-breathing trials and extubating patients appropriately to prevent deconditioning... This and more. And while I don't expect people to have this knowledge if you don't do this for a living, if you feel like you “know” this disease without understanding the above concepts, then let me be the one to tell you that you are not an expert. If you are making decisions based purely on your own thoughts and opinions because you “don't trust the experts” but either have never heard of or don't understand everything I just mentioned above, then I hope you will see this and see that you are wrong to do so. What I listed above is the bare minimum needed to even approach understanding this disease at an expert level. So for anyone who doesn't, but feels confident that they have it all figured out, I would suggest some caution and humility, because likely the trained experts are taking things into consideration you have no idea even exist. Medical professionals who have devoted their entire lives to things like this are still grinding away and learning more. And while we may not always get it right, we're always getting better, and the expertise we've attained has been earned over years and decades. It is not something you can spend an afternoon or a weekend reading about. And I would encourage you to hold medical professionals to the same standard. If they spend too much time talking about “their experience and what they know works” and don't attempt to mention a single prospective, randomized controlled trial to support their thoughts, then you are right to not listen to them. Because they are in fact not an expert, they are someone in a white coat pretending to be. I'm not a farmer, I would never in a million years think that I could read a couple memes and youtube videos and walk away thinking I could just go out and plant crops and raise livestock, much less tell an actual farmer what to do.

If you read this, and nothing I've said resonates with you, nothing I've said convinces you, then at the very least think about me, how you know me. If the data, the math, the scientific jargon sounds hollow, then hopefully you can look at the person it's coming from and find a reason to believe. To you, maybe I'm the little boy your kids played with growing up. Maybe I'm the kid you sat next to in high school. Maybe I'm the young man you saw nervously running through the hospital as a medical student. Maybe I'm someone you consider a friend. Maybe I'm the doctor who helped you or your loved one when all seemed lost. Maybe I'm the doctor who sat with you when your loved one was dying and I wished I could do more. Regardless, I hope that you can see me as one person trying to help others and do the best I can in the face of an absolutely overwhelming enemy in COVID. I'm one doctor, working alongside the bravest nurses, NP's, PA's, RT's, PT's, OT's, Pharmacists, Nurse's Aides, Cleaning staff, Kitchen staff imaginable. Together, despite our very best efforts, we've lost many patients to COVID-19, and we face it knowing we are going to lose more. I'm not a conspiracy, I'm not tyranny, I'm not an assault on freedom, I'm not the enemy. And if you can believe that, then I am pleading with you to take this as seriously as you possibly can. Limit the number of people you are around as best you can, wear the masks, listen to the experts about which medications work (Remdesivir and Dexamethasone) and which ones don't (Hydroxychloroquine and Azithromycin) because they are the ones with the technical knowledge to properly figure it out. And if a safe, effective vaccine comes out, I beg you to get it. Because even if you don't know someone who had died from COVID-19, those of us who work in medicine have known them ALL. And if we don't work together to beat this, eventually you will too.

this post was originally written by Jon on facebook and is being shared here with his permission

By Sarah

Hello everyone. I never was tested for covid when I needed to be, but I believe I am a survivor.

I am a nurse who made a switch 2 years ago to teach at the preschool where my 4 children have attended. I have 4 children ages 11, 9, 6, and 4 and also teach Sunday school at our church. My husband is a first responder. I was around many sick kids, including my own, in the weeks before I got sick. Symptoms i saw in the kids around me were fatigue, fevers (some high, some in the 99s), loss of appetite, headache, coughs (a lot!!!!), sneezing and runny noses. In mid March (the week before our spring break) I started having a tickle in my throat that I thought nothing of. In the first week it moved into my sinuses and then into my chest, but I felt fine. That Thursday i was cleaning the house when I very suddenly felt all of the energy drain from me. The skin on my legs was pale and mottled, which alarmed me, and I went to lie down in bed. I stayed in bed all weekend and started having body aches and internal pain. My temperatures were in the high 99s. I called the covid line, but was told I didn't qualify for testing because i hadn't traveled outside the US or been in contact with a known positive case. Also was told my symptoms weren't consistent with covid, but that i should call my doctor because something was definitely going on. I called my on-call doctor over the weekend and he wasn't sure what was going on, but called in steroids and a zpack to have on hand in case. On Monday my husband took me to the ER. I was so weak I barely was able to walk in. I felt like i was dying and wasn't sure if I'd be coming out. My husband waited in a lawn chair in the parking lot. My HR was 150 and BP was 180/100 on admission. I got fluids, labs, chest x-ray. Labs were borderline normal and I was negative for 25 viruses (they did not have enough tests to test me for covid19), ekg was fast but normal rhythm. Cxr showed a viral picture that they weren't too concerned about. I had a dry cough at this point, but nothing terrible. I went home and things got worse. I had trouble staying hydrated, lost my appetite and lost weight, was extremely fatigued but couldn't sleep at night because the pain was too great. I had some strange sensations on my body: a lot of tingling, burning, itching. My fingers and toes would be very numb in the mornings and it took a long time to get sensation back. I also had bad GI symptoms. I had multiple video appointments with my primary and she kept encouraging me and keeping me positive, as did my husband and family. I isolated in my bedroom, but my husband did come and sleep next to me at night, which scared me but also comforted me.

The GI symptoms continued for weeks and my heart rate remained around 100-120 during this time. I started having severe muscle spasms and contractions that lasted for hours and were very painful. The fatigue was indescribable. It felt like every cell, every calorie in my body was being used to fight this infection. I felt like i was fighting for my life. I began praying and repenting and that's all I did for days, weeks maybe, it's very fuzzy. I didn't have enough energy to read or watch tv so i just prayed. I remember waking from a nap in tears because I felt God tell me He healed me. I kept getting sicker. My cough got worse and I became mildly short of breath (resting and laying prone helped relieve it), the fatigue continued, no appetite, diarrhea, and i started having chest pain that radiated into my shoulders and arms. I was still shaking and having spasms and muscle rigidity.

After several weeks of this i started feeling like my body was giving out and couldn't take anymore. I told my children goodbye, wrote them things I wanted them to always know. A few nights later, at 2am, I felt God calling me. My heart started beating in a way I'd never felt before and I started feeling myself separate from my body. I felt so much peace. The pain completely disappeared and I felt comfort in knowing I was going to heaven and my family would follow after me in time. I wanted to tell my husband goodbye so I turned and whispered his name. He woke up and I told him God was calling me. He grabbed me immediately and told me, “no! Not now” and it somehow brought me back.

I slowly started to get better after that. Everything quieted down and I started healing. I gained my appetite and weight back. In May and June I started exercising again, resting when my body told me to. Ive still had GI symptoms off and on and some things that i think are circulatory or neuro like numbness and tingling in my extremities, some shakiness in my legs especially at night. I continue to have fatigue and shortness of breath that comes and goes.

To think that I was considered a mild case breaks my heart completely. This virus is evil and I could feel it when it was wreaking havoc on my body. Im praying for our Healthcare workers, our teachers, our children, our families, everyone. I wouldn't wish this on anyone ever. I pray those who don't believe in the seriousness of this virus never understand.

By Megen

I started having symptoms on June 28th- it was just a little bit of shortness of breath. I live with a roommate my son and her daughter. We already had suspected we would get it, because my roommates daughters babysitter had tested positive. So when we started having symptoms, we went to get tested the next day. Fast forward to July 1st and that is when I got really bad with the breathing so I went to the ER. They did an in house test on me, and it came back positive. But the facility that tested me 2 days prior had come back negative which wasn't true. I went a week generally just dealing with shortness of breath until midnight July 6-7th. I fell extremely Ill. I was shaking uncontrollably and vomiting and hot. I called an ambulance and went to the ER but they sent me home because my labs were good.

That whole week was the sickest I ever felt. I was so sick I don't remember my first 2 days. I was weak, couldn't walk or get up, debilitating fatigue, nausea, SOB and elevated HR. Very slowly over the course of 2 weeks I got better with the exception of 1 more hospital trip on the 10th and there I was diagnosed viral pneumonia. Based on my symptoms and recovery, my covid nurse released me from isolation on July 20th. On July 21st I felt great and did a grocery store trip with my son, but that evening had another relapse and fell very ill again.

This time I couldn't sleep I would wake up every 2 hours hot, nauseous, my whole body ached and had a burning tingle. I had nightmares every night and was extremely weak, pale and my eyes were swollen and I couldn't eat I couldn't pass a bowel movement in 4 days. That friday, July 24th I caved and went to the ER where I was there for 10 hours and 2 bags of fluids. My pneumonia was resolved my labs were find and a CT of my heart showed no problems. They sent me home chalking it up as unresolved issues from covid.

Today is Thursday July 30th. Since my hospital trip I've been improving, but with no warning or explanation as to why, yesterday July 29th I had a relapse, smaller, but a relapse. I struggled with the same issues I did the last week and today I am experiencing extreme fatigue and cannot get out of bed. My appetite has diminished as a result.

Currently I am supposed to get my son back from family after a week and a half on Saturday, but I keep getting so sick that I am unable to care for him. I am worried about my future and what it entails. So I've turned to God after 12 years of being out of faith.

That's my story.

By Jackie

I am a RN that works at a large hospital in GA. I have a disabled spouse that has had a transplant, heart disease and a disabled mother with COPD and heart disease that reside with me. I live with the fear of bringing this virus home to my family, while continuing my calling and career as a nurse. I see the real reality of this virus in patients and the spreading in society because a lot of people refuse to believe this is a real pandemic, but unfortunately is is all too real and the cases are continuing to grow in our hospital and we are having to open more covid units, we have more positive covid patients now than ever before. I pray people become aware and the only way we can prevent spreading this virus is through social distancing and when we can't do that wear a mask, and continually wash hands, use hand sanitizer, as well as educate yourselves and make sure you are taking anything you hear and read from reputable and scholarly persons and sites. God bless and stay well.

By Megan

My husband had no underlying conditions. He was a healthy 54 year old who went to the gym, played music, and enjoyed being a husband and father. He started out with a fever. Then he got so bad so quickly. Too quick to even do anything about. Less than a month later he was dead. This is unbelievable. It makes no sense. It is a horrible sickness. Please take it seriously. My children deserve a father. Your family deserves you.

By Jess

I’m in the cosmetology industry – waxing specifically. My business had shut down mid March with the pandemic lock down until June first. I went back to work June third. I wore a mask every store I went in, walked around with sanitizer in my pocket, lysoled grocery packaging, door handles and steering wheels, etc. June 24th, I had a client come in for a service. They had texted me saying they didn’t have a mask (in order to come in the building, you need one), so I met them at the door with a clean and disposable one. I stood inside the building at the door (with my mask on), while they were outside and handed it to them in an arms length distance. Side note – I do a covid consent waiver before they’re allowed in the building as well. The only time I came into contact with this guest while their mask was off, was when I was handing them one. To their knowledge, at the time of their appointment they had not known they were exposed to someone positive. June 28th rolls around and I start to have allergy like symptoms. Congested, mild sore throat, sneezing and face pressure. June 30th, my client contacts me to inform me that they had been tested a couple days back and their result was positive. My significant other and I rushed to a testing site. It took 8 days for the results. And the WHOLE time of waiting, I knew I had it. I was vocal about it. I just felt different and off. Also side note – I’m currently 17 weeks pregnant. Migraines are a usual thing for me and even my boyfriend, but these are nowhere near comparable. We wake up with them and go to bed with them. No medications even come close to touching them. It feels like an electrical shocking helmet has been placed on my head covering the base of my neck, temples, forehead and everything in between. A cough for me personally lasted 2 days. I never actually got a fever either. Body aches then came along with 100% loss of smell. Back pain in the lung area slowly appeared. Chest tightness and being out of breath is a regular thing for me now. I’m 5 weeks of still having covid and I can’t even let out my own dog sometimes. Mid conversion I have to gasp for air. My heart rate is through the roof, the migraine is constant, and it feels like a 400 pound person is sitting on your chest. The newest symptom I’m experiencing is the feeling of being heavy headed and heavy eyes. I’m quite confused and I just feel a little slower at processing things than usual. I’ve had moderate surgeries and have recovered faster than this. I have had tonsillitis, strep, bronchitis and pneumonia more times than I can count on my fingers and toes. This is not close to any of this. This is head to toe. I’ve never been sick consistently for 5 weeks and counting. My boyfriend is the same way, however he has more of a cough. This is not the flu. I know people who have troubles pronouncing words now, their voice has changed, vision changes, there are folks I know going on week 18 of this. This is not the flu. This is not a joke. It’s very real. The assumption is that you have either died or 100% recovered. There are so so many people in between with permanent daily effects. Mild or severe, the flu has never left me with anything like this.

By Yael

I live in Israel. I remember when I traveled to the US in early February to visit my Dad, I was nervous. I tried to buy a mask in Israel, but all the stores were sold out, so I bought a mask in Florida for the plane ride home. As it turned out, I did not contract Covid19 until late March. I began feeling sick, and my adult daughter who I see often lost her sense of smell and taste. She had the first positive test. My husband and I and our four daughters living at home were then tested. Only one daughter did not test positive. At the time, Israel was very proactive about testing. They sent someone from MADA (the equivalent of Red Cross) every few days. Our family had over 40 tests administered before we all had two negative tests in a row. That allowed us to leave our well-monitored quarantine (lots of visits from the police and ministry of health and cell-phone tracking).

The girls were either asymptomatic or did not get very sick. My husband has diabetes and we were very worried about him. He had fever for almost 2 weeks, and he lost a lot of weight. Ironically, the weight loss has helped his diabetes. I lost taste and smell, had general malaise, and diarrhea.

Since “recovering” both of us have had lingering issues. My husband has severe insomnia and is very fatigued. I continue to have diarrhea and now have a lot of chest tightness and cough. Both of us have had several falls, making us suspicious that there may be some neurological issues. My doctor started me today on 10 days of antibiotics and referred me (and my husband) to the Post-Corona Clinic. Not sure what will happen there, but I suspect they are collecting data on long-haulers.

Israel just started reducing their vigilance and now follows CDC guidelines which state you aren't contagious after 14 days, and they are no longer doing follow-up tests. I am very sad that after the great start Israel had, the country seems to have lost its focus. Corona cases climb every day.

I've been dealing with this illness since late March, and it is now the end of July. I feel discouraged and wonder if it will ever end?