Note: I have the utmost respect for healthcare workers and am astounded by their dedication during this pandemic. Maybe they regard being exposed to contagions as just a hazard of the job. To the rest of us it’s just plain heroic.
The experiences I relate in this post are meant to accurately document my own story, and the unknowns that still exist about the latest corona virus.
This Is the Beginning
My Covid-19 experience is probably atypical.
In fact, until an accurate antibody test is available, I can’t say for sure that I had the virus. Today is June 3, 2020. I went to the emergency room on March 28, 2020.
But I was very sick for a month, and now that I am into month 2, I continue to have muscle pain around my rib cage. I struggle with fatigue and to stay hydrated.
So little is known about this virus that it took me months before I could convince a healthcare provider that I needed testing.
10 weeks later and life hasn’t returned to normal.
When my husband and I started experiencing symptoms, we decided to request testing by emailing our Primary Care Physicians (PCPs).
In response, we were directed to quarantine for 14 days, or 72 hours after being asymptomatic.
In Ohio, as in other states, there is a shortage of Covid-19 tests. So, testing has been reserved for those over 60, those who are hospitalized, and front-line responders.
But after an ER visit, 14 days in bed, and severe dehydration, here’s what I’ve learned about this illness and its effects.
Listen to Your Inner Voice
When I called my Primary Care Physician (PCP) in late March, I was told that she was out-of-office.
I started to list my symptoms to the nurse, who would relay them to the doctor on call, while I waited on the phone.
I felt short of breath and tightness around my rib cage.
I felt dehydrated and was drinking water but it kept rolling right through me. By that, I mean that I was drinking water and then urinating. None of that water seemed to be staying in my body.
I was tired and light-headed, but couldn’t sleep more than an hour or so without startling myself awake.
I had wheezing in my lungs a few days earlier, but that had been replaced by just a heavy feeling. My rescue inhaler wasn’t helping.
My leg muscles ached when I walked upstairs.
I was fatigued.
I had diarrhea the day before and though it resolved, my stomach continued to gurgle.
My husband had been in bed for a week at this point, with a low-grade fever, sore throat, and congestion. He had experienced the diarrhea and stomach noises a couple of weeks earlier.
I did not have a fever nor did I have a sore throat.
The nurse stopped me and insisted that I only answer her questions yes or no, she didn’t want background information.
To be fair, I think she was doing exactly what she was instructed to do: read a prepared script and provide the answers to the doctor.
Except the script wasn’t very effective.
She didn’t ask about GI symptoms, or whether I was around someone who had flu-like symptoms.
When I tried to explain to her that I was caring for a sick husband, she stopped me and said, “I only want a yes or no answer to my questions.”
The nurse finished her interview with me. I felt frustrated that I couldn’t report all of my symptoms and circumstances to her.
She then relayed the doctor’s message: It didn’t sound like asthma. I agreed with that.
Protocol, she explained, was to go to the nearest Emergency Room (ER) for shortness of breath in the event it was heart-related.
I could tell by the nurse’s tone that she wasn’t convinced that I needed to go to the ER.
This was my first taste of the overall feeling I would soon experience from some medical personnel; I was overreacting, probably because of media hype surrounding Covid-19.
After thinking it over and talking with my husband, I decided to stick it out. The clear signal was that this was all in my head.
I still felt pressure around my ribs and now and then an uncomfortable muscle contraction under my breastbone. It was frightening. I tried to calm myself down.
I’ve gone to the emergency room before for severe asthma attacks. But this didn’t feel like one of those episodes.
Sleeping that night was difficult. I tried getting some relief by laying on my side, but it was fitful and I woke up exhausted.
I was also completely parched. My mouth had no saliva, and it felt like my lungs were breathing “raw” air – like the air had zero humidity. I still couldn’t retain any water.
In the early morning, I got out of bed and went downstairs to monitor my symptoms: Still short of breath, pressure in my rib cage, and just a general “something’s wrong” feeling.
But not just a little wrong, more like “SOMETHING’S WRONG!!”
I could feel my pulse in my ears. My body was tense. I had hot flashes followed by chills, but weirdly, no fever.
I told my husband that I was going to the ER. He offered to drive me, but he was still very sick himself.
The ER
Since it was still early and no one was on the road (the stay-at-home order was already a week old), I drove myself the two miles to the ER.
I didn’t see a single car on my way.
The ER was dark and empty when I arrived. Staying 6 feet away from the reception desk (I wasn’t offered a mask), I told the attendant (who also did not have a mask) that I was sent by my doctor because I was short of breath and having chest pressure.
I also told him that my husband was self-isolating with a fever and sore throat.
I was escorted into the “triage” room, where the attendant gave me a mask and handed me a thermometer.
No fever. But I already knew that.
I walked with him back to the ER, where I was told to disrobe and get into bed.
I could hear a nurse arguing with the desk attendant about me. She believed I should be isolated in a dedicated Covid-19 room. She was probably right.
I wasn’t moved, though I repeated my symptoms and my husband’s illness to each technician, doctor, and nurse.
Then came the tests for my heart and lungs. But no Covid-19 test. Even with a history of temperature and allergy-induced asthma, at 59 years old I was not classified a high-risk.
After heart and lung testing, The ER doctor arrived to talk with me.
He looked at my chart before walking into my cubicle and observed “Oh, no fever.”
He then took off his mask. I was worried about his cavalier attitude, because I felt very contagious at this point.
The doctor explained that I wasn’t having a heart-attack (thankfully). My lungs were clear (another thank you). I was going to get a nebulizer treatment, a shot of prednisone and more steroids to take as a follow up.
I was confused. They weren’t considering “the virus?” I remembered reading that steroids were maybe not a good way to treat the virus.
They were going to treat me for asthma. I felt like this wasn’t the right diagnosis.
But I wasn’t the expert.
The nurse came in to start the nebulizer. I asked her about the treatment plan. She told me that I could refuse the steroid shot, “But, this is the emergency room.” Another indication that this was all in my imagination.
Was I an alarmist using up vital resources, even though I was the only patient in the ER?
Still, I had this nagging suspicion that I was experiencing the virus. I kept my mask on.
After the non-steroidal drugs, I was more jittery than before, but I did feel a loosening in my lungs. The nurse told me that the jitters were a side-effect of the therapy.
I considered and then told her that I didn’t want the steroid shot.
At that point, I was done with treatment.
When a second nurse came in to remove my saline solution IV, I asked if I could stay to finish it because I still felt very parched.
He said, “Sure, I don’t mind. You’ve only had a small amount so far.”
Some instinct, or my very dry mouth, told me I needed the IV.
The steroids, not so much.
You’re on Your Own
I stopped at the drugstore to fill the prednisone prescription. Maybe I’d change my mind about needing it.
Was I the stereotypical patient who thought they knew everything about healthcare because they knew how to Google – the one doctors roll their eyes at?
I saw a display of Gatorade Zero and bought two quart bottles on impulse.
Back at home, I was still breathing better, but continued to feel pain around my torso and was exhausted.
I got a pitcher of water and took it upstairs with me, along with the Gatorade.
The next few days were pretty hard. The tightness around my ribs continued and now my kidneys were hurting due to the constant urinating.
My husband suggested I start eating salty foods like mixed nuts and tortilla chips along with the Gatorade.
I didn’t feel hungry, but I forced myself to eat every day. I ate bananas and drank pomegranate juice because they were supposed to be good for you, right?
Although I had no hunger, I consumed lots of hard-boiled eggs, oranges, and strawberries. I made myself eat salads and grilled chicken breast. I lost weight just lying in bed and breathing.
The IV, salt, and Gatorade slowed down my loss of fluids. I was starting to make a tiny bit of saliva now and then. My kidneys were getting some relief.
Still not sure what was wrong with me, and having no energy to do much but stay in bed, I started searching online for any indication that my symptoms (which were so unlike my husband’s) could be attributed to Covid-19.
It honestly didn’t take long to find a story in The New York Times Magazine about a young female resident who had identical symptoms and tested positive for the virus.
I now felt fairly certain that I had been infected.
A month had passed. Maybe I wasn’t going to die.
It was the end of April.
Stopping and Starting: The Virus Doesn’t Give Up
The entire month of April is a blur to me now.
One day, I would feel like I was getting better. The next day, I would feel short of breath and exhausted. It was the same for my husband.
He tried working from home. We tried talking on the phone to family and friends. But, even talking was absolutely exhausting.
The gastrointestinal issues would come back for a day. Then, on other days the shortness of breath would return.
The constriction around my rib cage would come and go, but was especially severe when I was fatigued.
Our neighbors and friends were kind and concerned. Neither of us could go out in public. They brought us groceries and incidentals. What would we have done without them?
Still, it was hard to talk to anyone without feeling panicked. The news of awful symptoms and fatalities made me anxious.
Reassuring loved ones that we were okay was difficult, probably partly because we weren’t so sure of it ourselves.
I stopped watching and reading the news.
By the first week of May, my husband was ready to give up. “I can’t live this way,” he told me. “I don’t want to spend the rest of my life like an invalid.”
Was he right that we were permanently damaged by the sickness?
After all, the “official” information was that Covid-19 lasted 7 to 14 days and that most people would feel “mild, flu-like symptoms.”
Maybe this wasn’t Covid-19. Maybe it was worse.
The Quest for Recovery
On May 11, I called my PCP and set up an appointment to “follow up” on my March 28 ER visit.
I thought that it would be a virtual visit, but because of the chest tightness she wanted to see me in person.
A nurse called me prior to the appointment to monitor possible Covid-19 symptoms. This interview was much more specific than the first time I called the doctors office.
Clearly, by May 2020 the facility had updated its screening checklist to include GI symptoms, muscle pain, and possible exposure to others suspected of having Covid-19.
I received a call from a scheduler informing me to report for testing on Friday, May 8. I said “Okay, but what test am I reporting for?”
“Covid-19,” the scheduler responded.
Finally.
42 days had passed since I visited the emergency room.
Drive-Thru Testing
I drove through an obstacle course of orange cones and barrels into an empty parking garage where technicians in full hazmat gear greeted me.
I was directed to put my car in park and keep my windows up until given instructions.
There was one other car ahead of me.
When my turn came, a cheerful guy with a face shield, mask, and surgery scrubs asked me to lower the car window. He produced a long swab and told me to tilt my head back and try not to move. He was going to swab the back of my nose/throat for 15 seconds.
And that’s exactly what he did.
He counted aloud. It was a long 15 seconds. I wondered what kind of sample I’d produce, given that I still had almost no mucus.
The swabbing was not comfortable, but it wasn’t horrible.
After being assured I did a “Great job,” I drove home.
Two days later I got the email that my test was negative.
The next day was my follow-up appointment.
Testing, Testing
I saw the doctor on May 11. To prepare, I made an index card that abbreviated my illness and present symptoms.
I told her that I was still having GI issues, though not diarrhea – it was stomach gurgling and weird stools. (Sorry about the details, but I want to be accurate.)
I also experienced shortness of breath when fatigued, which was anytime I was out of bed for more than a couple of hours.
But most distressing was the muscle tightness around my rib cage. After about an hour of being on my feet, it would start. And it didn’t stop until I went back to bed.
I asked about an antibody test but the doctor explained that the hospital system did not regard any of the current antibody tests on the market as sufficiently accurate.
I thought they were probably right, given my present experience with healthcare providers and Covid-19 knowledge.
The doctor told me that “We all have the virus on our minds, but, you know, people still have other health issues. Those continue. Because you are drinking a lot of water and fatigued, I am going to order some blood tests. Your glucose levels were okay in January, but I’d like to check it out.”
Again, the persistent message that my imagination was getting the better of me, it was not the virus.
A couple of days later the tests showed that my thyroid levels were low, my white and red blood cell counts high. My glucose was fine.
The blood test results made sense to me because I still believed I was fighting a virus.
My endocrinologist raised my synthroid dosage. My PCP’s office called me to schedule an appointment with a hematologist.
What? The doctors were still pursuing other avenues. No one was buying the virus scenario.
Another Doctor, Another Opinion
To be accurate, the department I was headed to was “Hematology and Oncology.”
Now, I was more confused than ever. Did the PCP think I had leukemia? Instinctively, I still felt that it was the virus. Why wasn’t anyone hearing me?
It couldn’t be a coincidence that my husband and I were both very ill, and that the onset of acute symptoms was sudden.
The hematologist listened to my symptoms and did a thorough exam including a checklist of possible causes of my blood results, everything from carbon monoxide poisoning to multiple myeloma.
He palpated my organs and lymph nodes.
We sat down and he gave his opinion.
“I don’t think you are facing anything long term, but I’m going to order more tests. If something is concerning, I will call you and set up another appointment. Otherwise, we will monitor you and do a follow up in six months.”
“Your high blood cell counts may be the result of dehydration. Be sure to drink a lot of water before your next blood test,” he advised.
I asked about the tightness around my ribs and my illness.
“That is your muscles,” he explained. No comment on my illness.
Well, at least I got an answer on the chest discomfort, and it seemed to make sense. Were my muscles fatigued from all of that struggling to breath? That also made sense.
I’ve since learned that an overproduction of red blood cells has been observed in covid-19 patients. This is sometimes referred to as a “thickening” of the blood which can (and has) led to blood clots and strokes.
Now, I was headed back to the lab for more blood tests and an ultrasound of my abdomen.
This Is Not the End
All of the blood work, including genetic testing, revealed no abnormalities. My white and red blood cell counts were now in the acceptable range.
This didn’t surprise me. I was now 11 weeks beyond my Emergency Room visit, and I was slowly regaining strength.
The only symptom that continued was the tightening of muscles around my lower rib cage, and a slight ache on my left side just under the ribs.
Yesterday, I had an ultrasound that took about a half hour. It was pretty intense for an ultrasound, and I felt some soreness in my left side as the technician worked.
I should get those results soon. I have an appointment with the hematologist in November, barring anything unusual happening before then.
Last night, I slept pretty well. My muscles continue to be sore under my rib cage. The feeling comes and goes.
I guess I’ve learned to live with it.
Getting to the Point
My husband and I survived this illness during our country’s pandemic lock down. Ohio is now starting to reopen.
Our state hospital facilities were not overrun. If anything, they seemed under used.
Summer is coming and our neighbors continue to exercise, work in their yards, go to stores, and will soon start revisiting their favorite restaurants.
So why go into this story now? Why do I hope that you’ll read it to the end?
Because I see something alarming happening that was predicted by our state governor and chief of health: we avoided a healthcare disaster, so it doesn’t seem real to most people.
My brother in New York City reports a different scenario. People are very aware of Covid-19 because the city was a hot spot for the virus in April.
But here in the Midwest, I notice that fewer people are remembering social distancing. Fewer people are staying at home. Fewer are wearing masks and cleaning their hands often.
My husband and I are probably safe for now, as we most likely have some immunity.
But for those who don’t feel vulnerable, please understand that you are.
As public places open, including some schools in the fall, remember that the virus is still out there.
Because our healthcare institutions don’t understand it, you are very much on your own unless you are hospitalized.
This is not just the flu. Worldwide, the impact of this illness is yet to be determined.
So stay safe. Be mindful that we all have a responsibility to keep those high-risk people safe.
This story continues.