The Killer Behind Killer Pneumonia: Acute Respiratory Distress Syndrome

More than 36,000 people die in the U.S. each year from flu; perhaps twice that many die of pneumonia. Yet, in reality, pneumonia itself is not the killer it once was. Advances in medicine now make it possible for many to successfully be treated and recover from this serious respiratory condition without hospitalization.

Instead, when we hear today that someone has died from pneumonia, it is often a case of complications from pneumonia. One of the most deadly is Acute Respiratory Distress Syndrome, or ARDS, a little heard-about and often fatal lung infection that affects about 150,000 Americans each year. While ARDS is still not fully understood, its early diagnosis and immediate treatment is vital to survival.

Yet, even with proper diagnosis and treatment, the mortality rate runs between 40 and 70% and is considered a catastrophic illness which can leave the fortunate who do recover to cope with tens or hundreds of thousands in hospital bills many insurance companies will not pay, debilitating symptoms that can last throughout the rest of a patient’s life, and at serious risk for Post Traumatic Stress Disorder.

What some find most terrifying about ARDS is how quickly it can fell a person. ARDS acts by literally starving the body of oxygen. In just hours, a patient can go from the symptoms of a bad cold or other infection to a state where bodily organs begin to die from oxygen deprivation. Exactly what triggers this “super bug”, as some doctors call it, is not entirely clear. But pneumonia or some other form of infection is often present when ARDS rears its ugly head.

I’m one of the lucky ones. A pretty healthy person who had never been in the hospital except to have my tonsils removed as a child, I was at my desk working just a few hours before a nurse was rushing me into a treatment room at the nearest hospital.

In my case, I spent about a week with a sense of body heaviness and a severe pain in my side. I know enough of the signs of a heart attack that I was unconcerned; my pulse and blood pressure were good. Since I’ve had pneumonia twice before, I dismissed pneumonia as a possibility because this did not seem like any thing like that.

When I started to feel flu-like symptoms, including low grade fever, I was almost relieved, sure now it was merely the typical body aches of a bad cold or influenza. I kept up my frantic pace because I was in the middle of writing three books about to go into production.

Then, late on a Friday afternoon of a holiday weekend, I could not breathe without severe pain. Trying to schedule an urgent appointment with a doctor was impossible nor would I consider going to the emergency room. Hospitals, after all, are for sick people and I confidently knew I was not really ill. The one doctor we did reach could not see me but suggested my husband make me walk and do yoga to feel better.

“If she can walk at all,” the doctor told my husband, “she’s going to be fine and healthy by Monday.” I can’t tell you how many walks my husband dragged me on or why he failed to notice my lips got bluer with each effort. I could not so much as sip water nor could I sleep.

Somehow, I hung on for more than 40 hours before, early on a Sunday morning after hours of trying to do so, I crawled successfully to the other part of the house where the master bedroom lay up a long flight of stairs and screamed, with neglible volume, until my sleeping husband finally heard me.

“Get me to the hospital now!” I managed to tell him.

We arrived to a busy ER but the nurse who first saw me lunged for me, pushed me into a wheelchair, and hurried me into a treatment room where suddenly all the staff was present. I suspect they thought I was having a heart attack. A CT scan showed pneumonia had consumed my left lung and my right lobes were now filling, too.

“Great,” I said, beginning to feel a little better courtesy of IV painkillers and fluids. “So you can give me an antibiotic and I can go home.”

“Uh, no,” the ER doctor said. “I think you might have to stay overnight for observation.”

Overnight turned into more than a three-week odyssey mostly spent in the Intensive Care Unit. After two days in a standard hospital room with an oxygen mask, a doctor drained fluid from my lung which brought instant relief. I was up and about almost immediately and pestering the staff to let me go home.

But my primary doctor, a wise man, did not want to let me go until they knew exactly what was going on. They knew I had pneumonia, but it was not a usual form. SARS was killing many in Asia at the time, and the concern was that I might be a rare American case.

As it was, the relief was short-lived, just as I almost was. Just hours after beginning to breathe better, in the middle of an inhalation therapy treatment, I simply stopped breathing. By the next morning, the doctors were shaking their heads and telling me I would need to be rushed to a larger medical center as the only possibility to save my life.

Then, finally, the lab results came back with the diagnosis of ARDS. Surgery was performed right there in my ICU bed to insert a tube in the space between my collapsed lung and my chest attached to a pump to draw away fluid. This pump would stay with me for more than a week and the tube followed me home from the hospital weeks later. I was also treated to oxygen being forced into my body at high levels of pressure and a central venous line implanted in my chest to handle all the drugs that needed to be pumped into me simultaneously.

Sure, that was bad enough, but the alternative was worse. Many ARDS patients must be placed into a drug-induced coma before they are put onto a ventilator where they must stay for between one and three weeks. Without it, the organs collapse from lack of oxygen. Yet, as somebody who can’t stand sedation, the cure sounded worse than the illness.

But my luck turned. Eventually, I began to improve. Somehow, I actually managed to work on my books through most of my stay in ICU, even with the aquarium gurgles of the lung pump, all the wires attached to my body, and a haze of drugs because of the severe pain. Three-plus weeks later, I left the hospital 35 pounds lighter save for the $60,000 hospital bill, but very, very grateful to be alive. Today, my life is pretty much back to where it was before the illness except for a large amount of scar tissue that makes every breath quite painful.

The moral of this story, if there is one, is that any serious pain, especially one in the general area of the chest, should be checked immediately. Pneumonia and ARDS, like heart attacks, don’t always produce the same symptoms in everyone. You don’t have to sport a 104 degree fever to be very ill. Like me, you can be walking around and working just a few hours before you can barely crawl or call for help.

Also, while pneumonia can be treated very effectively on an outpatient basis today, it still requires close monitoring by medical professionals to be sure pneumonia – or other infection – does not progress into a super bug like ARDS. Even the pros can have a tough time diagnosing the change from pneumonia into acute respiratory distress. Seek expert help and report any worsening of symptoms immediately.

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