Foundation Views

Both Sides of the Bed

February 2012

It’s been a while since I wrote an article for Foundation Views.  Excuses, excuses...  We all know how life can get in the way.  Some of what has gotten in the way is working hard with the American Thoracic Society (ATS) to raise awareness of ARDS and ARDS Foundation with those medical professionals who are unaware our charity exists.  Of course, family, work, and other daily issues have take time and attention as well.

I have also faced many personal challenges along the way, as I am sure we all have, but most recently, I have faced a challenge that many of you are familiar with…  a loved one with Acute Lung Injury. (ALI)  And I found myself on the other side of the bed.

While many of you know my personal ARDS story, and of course, it is recited on the ARDS Foundation website, ardsusa.org, but briefly, in late May, 1995, I suffered lower back pain that resulted soon thereafter in difficulty breathing; when my doctor refused to see me, I found another doctor, was diagnosed with Sepsis and then ARDS and ended up in the hospital for 9 weeks, on a vent for 8 weeks, and in a coma for four weeks.  I had almost every complication one might have but somehow, after over two months, I walked out of the hospital.  I was thirty-three years old.  Let me repeat that… I was thirty-three years old!

Last October, my father had an earache.  That earache developed into shingles and eventually he was diagnosed with pneumonia.  Yes, the thought occurred to me of what might be, but after a week, he was released from the hospital for Thanksgiving weekend and yes, my family and all of his friends, were especially thankful!

Sadly, the following Monday, he was rushed to the hospital, admitted to ICU, and a few days later, a surgical procedure was performed.  Now I was not the only one in the family who began to consider what might be, but to properly treat his lung condition, the test was necessary. 

That Friday, we did what many of you are familiar with, sat in a waiting room, worried and frustrated.  Eventually, a doctor emerged with a diagnosis!  Wow, a real diagnosis!  My father had BOOP, a treatable lung condition.  We went back to ICU to await my father’s arrival only to be told that they could not extubate him.

A day or two later, his doctor mentioned that he had Acute Lung Injury (ALI), which is treated essentially that same as ARDS.  Supportive treatment, putting fires out, the usual… Second attempt to extubate failed.  The delirium was very difficult, for both him and for us.

A few days later, they tried again to extubate.  He seemed to do better until suddenly doctors discovered he was bleeding internally. A while later, his doctors emerged, very serious, stating that he lost 11 units of blood in mere hours and he needed emergency surgery that they did not expect him to survive. 

All night we waited. Helpless but still hopeful.  What is it I always say? ‘Where there is life, there is hope…’

And somehow, he survived the night.  And in time, they were able to extubate. Soon, he was transferred to a CCU and then to inpatient rehab. About a month ago, my father was discharged.  My father is seventy-seven. Yes, seventy-seven!

So what have I learned on the other side of the bed?  It’s tough!  Really tough!  Going to the hospital day after day after day, on the roller coaster ride we all know too well; it is exhausting, stressful, and overwhelming.  But as my father lay in a bed, on a vent, I could still go downstairs, get a soda, make a phone call, walk, communicate and more! 

My parents had endured my hospitalization, sixteen plus years earlier. They spent everyday, and every night as late as they could, in the hospital with me.  My siblings, too, have endured it, now twice. And everyone they love, everyone our family loves, has also endured it twice.  Acute Respiratory Distress Syndrome, Acute Lung Injury, and Sepsis are tough on the patient and tough on those who love them.

But the ray of hope that I observed was that hospitals seem to be acutely aware of infection control, with masks and gloves everywhere, and disinfectant for the hands of those who visit as well as for those medical professionals who are constantly in the room.  Masks and gowns are readily available, if needed for medical professionals and visitors alike. All of those machines that were once so noisy and intrusive are much quieter, so quiet they did not even cause flashbacks for me.  And the biggest improvement was how attuned the doctors and staff was in terms of ensuring physical, occupational and speech therapy as soon as possible in the hospital and aftercare following his discharge.

This realization is of critical importance for our community; when medical professionals realize the value of providing infection control and in patient therapies, they ultimately improve the overall health of the patient, both physical and mental, increasing their quality of life and reducing potential depression.

Yes, it is, without a doubt, still a roller coaster… but there is progress, there is hope, and at the end of these last harrowing months, I feel that somehow we, the ARDS Community, along with the dedicated medical professionals who study and research and treat patients in our community, have made critical progress – I keep saying it, and now I believe it --we have all made a difference.  And now, more than ever, I know that we can continue to make a difference for others who will undoubtedly face ARDS, ALI, and Sepsis. 

Eileen Rubin, President