January 20, 2003
In 1995, I was diagnosed with Adult, now called Acute Respiratory Distress Syndrome, after experiencing excruciating lower back pain that then moved five days later into my lungs created difficulty breathing. I spent eight weeks on a ventilator, four in a coma, and certainly beat the odds, as at least half of the estimated 150,000 US citizens who get ARDS yearly, do not survive
I am a survivor, but of what? I say this because when people ask me what caused me to be so ill, and I begin to explain, their eyes glaze over. They had seen me in the hospital for weeks, even months, in a coma, hooked up to countless machines and heard the explanations by my doctors, nurses, family and friends, hell, sometimes they are even my family and friends, and I can still see it in their eyes…. the blank stare and the thought behind their eyes: this is not something that will ever happen to me.
Sometimes when I tell people about ARDS, their eyes brighten and they begin to perk up: “I had an uncle, he went into the hospital for a hernia operation…had some problems with his lungs and then, he was suddenly on life support and never got out alive. I bet he had what you had.” Other people might say, “Is that what Jim Hensen had? That was so sad.” I will follow up with that fact that Dick Schaap, the sport’s personality, died from ARDS after fighting for nine weeks with acute respiratory distress syndrome following his hip replacement surgery, and I find that almost no one will have heard about that fact.
In a day and age where our media is almost everywhere, network television news, cable news, online news, radio, newspapers, cable health shows, it seems almost impossible to believe that a syndrome that affects over 150,000 people a year in our country, killing half of them, would still be virtually unheard of;
The million dollar question is why would a syndrome that kills more people each year than breast cancer and AIDS, in the United States, still be unknown?
Why would those in the media be responding similarly as my family and friends. Those dumbfounded looks. Perhaps, it’s not their fault. Maybe they don’t get it either. One reporter told me that it was difficult to explain ARDS to the masses. I was doubtful, but if patients, families who have lost loved ones, medical professional do not explain it better to those in the media and those on Capitol Hill so that other people can comprehend our immeasurable battle, and our immeasurable loss!
So, what is the definition of Acute Respiratory Distress Syndrome? It is a sudden, life threatening, lung failure, often called shock lung, white lung, or wet lung. Mechanical ventilation, or some other form of assisted breathing devise is required, because without it, the patient would not be able to live. ARDS occurs after a precipitating cause, sixty have been identified, and anything from infection to trauma, and it comes on within 24-48 hours of the initial insult. ARDS can strike men, women, and children without warning. There is not prevention and no cure. A person cannot live with ARDS. One must live through ARDS, or die.
The number of people who are diagnosed with ARDS each year in the United States is staggering. So, is ARDS too frightening to report to the masses? Is it the fact that currently it appears there is little hope? What could be the reason that no one is letting the public know about this syndrome that affects so many Americans every year?
There was a time when people lacked comprehension of other diseases or syndromes, but now, when people hear the names of those ailments, they innately understand the treatments involved. No one has to explain. But ARDS…ARDS is more illusive; still, it is not impossible and those who have endured ARDS should not feel resigned to those faces devoid of comprehension.
As a large population devastated by this syndrome, survivors and families who have lost a loved one, we are equally deserving of the attention by those in Washington and those in the media. Without the publicity and media attention that these other illnesses, syndromes, and diseases obtain, ARDS will never be able to get the funding needed to sufficiently research the essential questions that all survivors are asking: “Why did this happen to me?” Worse yet, the families of those who lost a parent, sibling or child, are left with that burning question, “Why?”
The more attention that ARDS can garnish, then the more funding this syndrome might be able to raise for research, and then, perhaps, these deaths, which total about 75,000 a year in the United States will not have been for naught. For each patient that the medical professionals send off to rehab, they send another one to the morgue.
And that is our challenge. I am a survivor. I wear that label proudly. But I would be happier if others knew of what I had survived.