A.J. Campbell: A numberless death in a Florida ICU during the COVID pandemic

I woke up early on the last Sunday in April and reached for my cellphone for the latest news about my gravely ill cousin’s condition at an intensive care ward in a regional medical center in Hillsborough County.

It was not good news.

Another cousin had sent us all a message on the family text chain: “Update: Stephen is in multiple organ failure … doctor says brace for the worst.” (Stephen was not his real name. I am using it to protect the family’s privacy.)

His condition was so precarious that his beautiful wife of 35 years was let into the hospital to see him. Every night she would join us in a Zoom room to update us.

She was calm and collected, with boundless optimism for Stephen’s full recovery. But we all suspected that after the call was over, the reality we all knew would sink in.

He passed May 2, their wedding anniversary. While the cause of Stephen’s illness was a mystery, the one thing that the hospital was insistent on was that he did not die because of COVID-19. But he did die of a strangely similar condition.

Stephen was a rock to my family, the peacemaker and chef, the arranger of dinners, and the planner of vacations. He never met a kitchen gadget that he didn’t buy. It was impossible to walk into a big box store and not walk out with a new chafing dish or baking sheet no matter how many he already had. I always thought it was his optimism that made him buy it.

The hope of the next meal with friends and family being just slightly better than the last.

Stephen was medically fragile even before he was admitted into the hospital. He was on oxygen therapy, had high blood pressure, diabetes, and was obese. His medical condition kept him in the house, as it did his wife, who was allowed to work from home.

He took all the recommendations from the Centers for Disease Control and Prevention (CDC) seriously despite Florida Gov. Ron DeSantis’ mixed messages.

Stephen was at home when he was stricken with sharp pains from what he thought was a kidney stone, but it was not. He vomited several times, aspirating some of it. He was admitted to the hospital ICU ward and placed on a ventilator to help him breathe while the doctors were stuck trying to figure out the cause of Stephen’s pain.

We were all worried that his condition was a result of COVID-19. Still, the doctor did not want to test him because he would be moved to the quarantine ward where the doctor feared the care would be worse. It wasn’t until Stephen developed an unbreakable fever that he was tested. The doctor may have had concerns that Stephen could catch the coronavirus after exposure on a COVID-19 ward — especially given his medically fragile condition. So, perhaps it was a risk management strategy.

Stephen and his wife were ardent supporters of President Donald Trump and had expressed that the virus and its impact are overblown, politically motivated, the next attempt to take down the presidency. Most of my family feels the same way.

No one wanted to press the issue of testing besides the liberal wing of my family. There was heated pushback on the mere mention of testing on our nightly family Zoom calls. When Stephen finally was tested and it was negative, we all breathed a collective sigh of relief.

We were so happy to know he didn’t have the virus and he could improve with care and time.

Stephen did begin to recover.

While still in the ICU after being taken off the ventilator, he was on a BiPAP machine, which pushed oxygen into his lungs. His blood sugar was high from the steroids, and he was on broad-spectrum antibiotics. But we had every hope that he would improve. In the back of my mind, I wondered if the COVID test had been a false negative.

So we waited.

Soon, the reports out of the ICU became more concerning. Stephen became delusional. The nurses complained that he was combative and angry, saying he was less of a pain when he was ventilated. He chewed his feeding tube and banged his leg on the side of the bed.

His wife begged for a neurological consultation, which was promised at the end of that week but had yet to come. Seizures and hallucinations have been reported as part of the COVID-19 disease progression, according to The Wall Street Journal. The doctors said that if his condition didn’t improve by Friday he could get the consult.

Stephen’s improvement was just a momentary pause in the illness as it moved to other parts of his body to wreak havoc. Each one of his organs began to shut down until he was placed back on the ventilator. He developed double pneumonia. Fluid rapidly built up in his system; his kidneys, which had been on dialysis, failed, and his heart stopped.

The medical team tried to revive him, but he was too far gone, exhausted, losing the battle he never wanted to fight.

How may many other false negatives exist? New data out of Wuhan, China, where the coronavirus got its start, suggests some COVID-19 tests have a 30% false-negative rate, according to Healthline.

Suggested explanations for possible false negatives include that they weren’t rigorously tested for accuracy before deployment, Dr. Gary L. LeRoy, President of the American Academy of Family Physicians, told Healthline.

If the false-negative rate is three out of 10 tests, it is possible that my cousin’s COVID-like disease progression was the undetected virus.

What if other deaths are being attributed to a heart attack or pneumonia, but were COVID-19 cases? There is a mortality calculation that the CDC follows to show deaths that are more than the standard expected rate. It’s called an “excess death” rate, which is defined as the difference between observed numbers of deaths and expected numbers.

The most recent figures that we have available from 2019 show a monthly death rate of about 250,000 per month from all causes. The total predicted number of excess deaths since Jan. 1 across the United States excluding COVID-19 cases are: 32,325.

Florida began reporting COVID deaths on March 17, and there is an increase in the number of pneumonia deaths at the same time. One possible explanation is the deaths are being coded as pneumonia instead of COVID-19.

For example, looking at the week ending April 11, there were 423 pneumonia deaths and 295 COVID-19 deaths. Compare that to two months earlier in the week ending Feb. 15: There were 273 cases of pneumonia and zero COVID deaths. Pneumonia deaths are seasonal in nature and usually have lower numbers at this time of year.

Nationally, pneumonia tends to peak in February and March. My cousin had double pneumonia and tested negative for COVID-19.

If it was a false negative, and my cousin did have the virus, he might have benefited from COVID-19 therapies. Shortly after Stephen was admitted to the ICU, the Food and Drug Administration (FDA) gave emergency use authorization to remdesivir, a drug that shortens the time a patient has the virus and prevents its replication in the body. The drug is only currently indicated for COVID-19 patients. Other effective treatments, like prone positions, while not ventilated, have shown promising results.

I am not sure if any of these therapies would have helped Stephen or if anything would have helped.

Although my cousin’s wife wanted an autopsy, the hospital and coroner refused. The county coroner’s office received the notification, posed some questions, then refused to do the autopsy. I confirmed this with the coroner’s office.

She was told she would have to pay $10,000 out of pocket to have a private autopsy. With funeral costs and her job to hang on to, this would be a steep financial burden. I’d think the hospital would be desperate to find out why my cousin died so suspiciously.

According to the Hillsborough County website, it is necessary to investigate the medically expected death of someone who died, yet they chose not to do so in his case. When I contacted the coroners’ office, they confirmed that there would be no autopsy. When I pointed out the need for an investigation, they reported that they did investigate by asking some questions.

The remains of my cousin were released for burial.

We don’t know how to tell his mother, who is living with Alzheimer’s, or whether we should tell her at all till the coronavirus is no longer a threat. His mother is medically fragile, we are all afraid of infecting her. She can’t come to our house, we can’t stay with her.

Having a “Zoomeral” ― a funeral on Zoom ― was not our first choice, and none of us know what to do or how to make this real. How do we honor Stephen’s life when we can’t be together? We can’t hug each other. Some of us are vulnerable to infection, and some have been forced to keep working. His brother is a police officer. Without tests, none of us can be sure it is safe.

The isolation and not knowing is unbearable.

I will miss Stephen for his card games and candied yams with the jumbo marshmallows and an entire stick of butter at Thanksgiving and his generous spirit and love for a quirky dysfunctional family like mine. He left this life too soon at 58 years.

One day I would like to know why.