Article
The author thought he already understood what seriously ill patients go through. Then came his personal crisis.
The author thought he already understood what seriously ill patients go through. Then came his personal crisis.
Dorothy was 78 and struggling with arthritis, memory loss, incontinence, and weakness. Her daughter accompanied her into the exam room, to make sure Dorothy would be honest with me.
She needn't have worried. First I examined Dorothy, and asked a few questions. Then I took a few minutes to describe the feelings she must be having: frustration over being unable to sleep or to reach the bathroom in time at night . . . fear of becoming exhausted . . . terror at the prospect of falling and being unable to get up . . . embarrassment over not remembering what you were just doing . . . the anguish of knowing that you have less and less control over your life. As we concluded the visit and made follow-up plans, I'm not sure which of us had more tears.
I'd spoken to Dorothy from personal experience. My own struggles had begun in the fall of 1999 when I returned to my family practice group after a refreshing three-month sabbatical devoted to making a 400-mile bike tour, serving as a summer camp counselor, and completing a few long-delayed home-improvement projects.
Three weeks after resuming practice, I contracted a URI. Two days later, it turned into a "killer flu," with high fever, GI upset, and myalgias. By that evening I was too weak to walk. An ambulance took me to the ER, where three liters of IV fluid restored enough strength for me to walk to the car for the trip home.
By the next morning, however, I felt no better, and I'd developed a slight cough with some right anterior pleuritic chest pain. My wife drove me to my clinic, and a chest X-ray there showed the upper two-thirds of my right lung whited out. So back I went to the hospital for IV antibiotics, oxygen, and nebulized albuterol.
I was in excellent condition for my age43so I expected a brief hospital stay while the powerful antibiotics did their work. Unfortunately, my stay was hardly brief. Within 72 hours I was unconscious, in the ICU, and on a ventilator, with full-blown ARDS. I have no recollection of the next seven weeks because of the heroic doses of paralytics, narcotics, and benzodiazepines used to prevent my body from fighting the ventilator that kept my stiff, fluid-filled lungs functioning.
Although my doctors employed every conventional treatment during my 10 days in the ICU, I continued to deteriorate. They sent me to the local tertiary care hospital, where doctors had been experimenting with nitric oxide inhalation therapy for similar cases. With that treatment I improved a bituntil a day later, when I incurred my first pneumothorax. In addition, a bleb was forming on my right lung.
Over the next four weeks, seven tubes were placed in my right hemithorax, in an effort to reduce the bleb and stabilize lung function. With two more weeks of maximal therapy, I finally began to improve. After a total of six weeks in the ICU, the doses of sedatives and narcotics were reduced enough for me to regain consciousness intermittently.
The doctors had told my wife that I might be disoriented and combative when I awoke. Instead, I emerged from my drug-induced coma goofy and agreeable. When she told me that two months had passed, that I was at a different hospital, and that I'd been near death for weeks, I was amazed.
The reaction of my doctors, nurses, and aides made recovery even more exciting. After battling for what seemed like an eternity by ICU standards, they had huge grinsand occasional tearswhenever they saw me breathing on my own, eyes open and even able to speak.
My vocal cords and diaphragm, however, seemed to be the only muscle groups still working. I couldn't sit up without support, couldn't swallow food or liquid, and could barely get my hand to my face. Standing wasn't even a possibility. Although physical therapists had been working with me for weeks to prevent muscle contractures, and despite all the muscle relaxants I'd taken, my joints were remarkably stiff.
Still, every day brought further improvement, and I felt hope rather than fear. My wife told me that prior to my "awakening," there'd been times when I talked to imaginary individuals or laughed for no apparent reason. My only recollection from that period was one occasion when I struggled to communicate with a nurse, but couldn't make myself understood. I remember thinking then that I must have suffered a stroke and could no longer speak.
My final days in the ICU were difficult. Although the sedatives had been discontinued, their levels in my bloodstream took weeks to diminish. There were times when I could think clearly while awake, but then I'd doze off and become confused. With my normal sleep pattern disturbed, nights became an endless series of fitful naps and noxious dreams.
In many ways, I found rehabilitation more difficult than acute illness. Rehab patients are constantly given tasks they can't yet perform. Day after day, that's a tough physical and emotional assignment. If I hadn't seen some improvement almost every day, I could easily have become depressed.
It took more than half an hour every morning to get dressed. Then came the struggle with breakfast as I tried to regain control over drinking, chewing, and swallowing. The effort often left me exhausted and without appetite.
After breakfast, pool therapy gave me an opportunity to warm up before the tougher physical therapy sessions on dry land. It took one strong assistant and two handrails to help me get from sitting on the edge of the bed to a standing position. The therapist felt that using a walker might keep me from relearning a normal gait, so I had to teeter along with no external support besides the therapist's safety belt. If I scuffed my foot on the carpet, bent a knee too much, or just got off balance, I could have found myself down on the floor, with no way to get back up without help.
After 10 to 20 minutes of this workout, I'd lie down exhausted and rest for up to three hours. I both welcomed and dreaded the arrival of my next therapist. That meant being asked to do more near-impossible tasks; but it also meant another chance to see that my body was recovering.
Because my doctors were concerned about whether I'd suffered any anoxic brain injury during the worst of the ARDS, I had to go through a six-hour series of cognitive tests. I feared that my responses weren't correct, quick, or rational enough to permit me to return to my medical practice. It didn't help when the evaluators kept saying things like "Everything seems to be okay," as though there had to be a deficit lurking somewhere. I suppose I can't blame them for being cautious. I wouldn't want to learn, after being treated, that my physician was only 85 percent mentally competent.
Finally, 10 weeks after entering the hospital, I was ready to return home, just in time for Christmas. I can't describe the elation I felt when I walked into our cozy home and rejoined my wife and daughters. (Sunlight, carpeting, home-cooked food, and happy chatter are all in very short supply in the ICU.) I didn't need any other Christmas present; just being in the same room with them again was gift enough for me.
Two months later, I gradually resumed my practice. Although I got a little short of breath when I walked from my car to the office, it was a joy to be back at work. During those first weeks at the clinic, I was scheduled for just two patients an hour for a few hours every other day. As I saw them, I felt as though a curtain was lifting before my eyes. Before my own illness, I used to think that if I was caring enough, I could understand what so many of my patients experienced during their illness or injury. To some degree, I still believe that.
But experience is definitely a better teacher. I now understand more fully that members of illness-specific support groups don't gather just to increase public awareness, or to celebrate their good fortune at being alive. Those people also come to look into the eyes of others who have walked the same road they havea road few others have seen or understand.
Jeffrey White. Unconscious in the ICU: Been there, done that. Medical Economics 2001;7:54.