My first ever hospital stay was a modest physical and emotional odyssey that broke down roughly as follows.
(NOTE: the following is rated “PG-13” for Pretty Gross, and naughty words that every thirteen year old has heard. You were warned.)
1 day to visit the emergency room (at a small, nearby hospital) with a GI bleed (which is a nice way of saying blood coming out my ass), get checked into the hospital, and wait many hours for a room, until they found me one in the pediatric ward (the adult wing being full). Except for my one admittedly disgusting symptom, and a frequent gurgling sensation in my gut, I felt pretty normal, in good spirits, with no pain. I flirted with the nice nurse when she put me on an IV, to keep me hydrated. I chilled out in the room I had to myself, in the only quiet wing of the hospital, watching TV for the first time in many weeks (mostly assorted reruns of Law & Order).
Later, when nature called, I thought nothing of wheeling my IV to the smallish (pediatric) bathroom, positioning it outside the door, and sitting down on the toilet. Where, in the middle of doing my unusual business, I passed-out, fell off the toilet, bouncing my head off the sink before knocking the door open with it. Regaining consciousness, sprawled gracelessly on the bathroom floor, bleeding moderately from my head and profusely from somewhere else, too weak to get up, with my nice nurse rushing into the room, is definitely the most disgusting and completely vulnerable position in which I’ve yet found myself. After that, the other indignities of hospital life were easy.
3 days in intensive care, because the pediatric ward lacked the appropriate equipment and staff to monitor my seriously anemic and otherwise mysterious condition, and to always keep a virtual eye on me, while assorted specialists took their turn diagnosing the source of my GI bleed.
The first couple endoscopy tests didn't turn anything up, because they start by looking for the most obvious causes, and mine turned out to be a less common condition. All I remember of those tests was waiting for the drug they administered, via my IV, to knocked me out. For the angiogram, I not only got to stay awake, I got to watch: this bright young doctor with the craziest damn miniature sci-fi roto-router tool and attachments you’ve ever seen, gently inserting this thing into an artery in my thigh, manipulating the apparatus with just his hands, using gestures that are somewhere between a deft plumber and a slow jazz improvisation, while I watch the router inside of me, on a realtime X-ray display, moving through my arteries, one at a time, to every part of my abdomen, like a mechanical sleuth in the secret passages of my body. Extra bonus points: this was the first test to find the spot that was bleeding. 
While the fourth test confirmed it was Mekles acute diverticulitis.
While the fourth test confirmed it was Mekles acute diverticulitis.These test each took 10-40 minutes to conduct; but scheduling each one evidently required 10-30 hours.
Which is how I got to spend 3 days in the intensive care unit, being one of the only patients in that ward who was routinely conscious -- as opposed to my immediate neighbors: intubated, alone and essentially in high-tech storage awaiting death. (Yes, that’s every bit as sad as it sounds, and constantly sobering.) In the ICU you get a private room, which is to say your own small room with a sliding glass wall (like a cross between a ‘60s modern apartment balcony and the indoor exhibits at the zoo) that fronts on a bustling hallway. The monitoring and regulating of your health, milli-second by milli-second, is done via a spider’s web of wires and tubes tethering various parts of you to a bedside rack of equipment and scopes. While, hour by hour, it’s a accomplished by bustling nurses measuring everything that goes in and out of you.
Rooms in the ICU don’t have a phone; most of the patients have a tube down their throat, or are otherwise unable to speak. So I had to ask to borrow the head nurse’s cordless phone, anytime I wanted to call someone. Since the room cost a few thousand dollars a day, and so many of the patients are captive zombies, they throw in cable television for free.
But the really interactive and educational media is that bank of equipment constantly measuring your vital signs. Perhaps you’ve read about buddhist monks who spend years learning how to focus inward, who can regulate their breathing and heart rate. And maybe you’ve heard how the act of observation (like the filming of a documentary, the news, or a reality [sic] TV show) changes the thing that is observed. Well, being able to see my own pulse, blood pressure, systolic pressure, and the amount of oxygen in my blood, in real time -- and mind you, having lost and still losing considerable blood, my blood pressure was often high enough to trigger an incredibly annoying alarm on my monitor -- while sharing the ward with nurses who got agitated by alarms or extreme readings, and doctors who then ordered the attachment of yet more wires and tubes, I started watching Vital Signs TV like everybody else. But, being the star of the show, I soon realized I had some control over the programming on this network. After I learned how to read the monitors, I began to focus on my body, and observe how my state of being changed the readings. With the constant and immediate feedback of the monitors, after a few hours of experimentation, I was able to calm myself, to be at peace in the moment (I don’t know how else to describe it), and thereby make those readings go down. It was fascinating, slightly entertaining, and a little reassuring. And it kept the alarm from going off.
During all these days I had no food or nourishment of any kind, not even in my IV. And I found myself overwhelmingly at the mercy of multiple strangers, of varied competence and personality and sleep deprivation, who rotated in and out of my life in 12 hours shifts. I was personally unqualified to solve my serious medical problem, to cope with it’s immediate side effects, nor physically able or permitted to attend to my basic needs, without assistance. To put a finer point on it: I was ultimately unable to keep myself alive.
In the face of this, I chose to focus my energy and attention on one of the few things I could control: my attitude. Despite everything, day and night I remained upbeat, both internally and in every interaction with my caregivers. I do believe attitude directly affects health. And it doesn’t hurt to have the fond opinion of your caregivers, either. Plus, in the ICU, you want the harried and distracted staff to remember that you aren’t just there waiting to die; you want them focused on making you well and getting you out of there as soon as possible. So, I did not dwell on the things I could not change, was friendly and lighthearted with the doctors and nurses, politely followed up with them about test results, always focused on the next step, not the failure of the last test, and simply devoted myself to getting the best possible medical care from these professionals to whom I had entrusted my health and longevity. I never doubted that modern medical science could diagnose and repair any condition with the symptoms I had.
And that repair took...
20 minutes surgery, to remove the offending piece of intestine -- and to put my shoulders in agony for the next four days. (Something about the way they had me crucified on the operating table.) This was followed by...
3 days to recover from surgery and verify that all systems were working again -- and wondering which piece of medical equipment to unplug, so I could charge my laptop.
After many days without a crumb of food, I was literally starving and wasting away, thus pretty excited to experience the culinary wonders of the hospital’s liquid diet. Alas, I’m easily spoiled, and quickly tired of the meager nourishment and flavor to be derived from Jello and bad decaf tea, to say nothing of the horrid texture unique to strained chicken rice soup. Cranberry juice cocktail was the most exciting thing on that menu.
Once my caregivers and I diligently witnessed that my intestines were functioning again, and in the normal way, I was moved back to the still quiet pediatric ward, and graduated to the solid diet. In the morning, I got to read the tantalizing menu descriptions for the day, and order whatever I wanted; but the actual items delivered at meal times made me long for Jello and beef broth. It’s tempting to advise you to stay away from the fancier sounding items on the menu. But it remains a wonder to me how modern science has trained professional nutritionists to screw up something as uncomplicated, and ordinarily harmless, as an english muffin. I drank the cranberry juice.
This new diet, and my improving condition, had me totally psyched about going home soon -- which is when I got...
2 days back in the intensive care unit, to recover from a hyper nasty infection -- with temperatures peaking at 103, 104 then 105.5 -- which I contracted as a direct result of intestinal surgery. It turns out that hospitals are the breeding ground from some of our world’s nastier pathogens; and those pathogens find nothing quite so inviting as a hole cut into a patient with an already weakened immune system.
This infection was the undoing of my positive attitude. Staying happy and upbeat without food or joy is a house of cards that can stand against just so many storms. This unlooked for setback, a fever wracked war raging throughout my corpus between a Blitzkreig infection and the full frontal assault of five different antibiotics in mega-dosages, broke my will, landing me in a depressed funk. I was terrible company, non-conversant, slept most of the day (presumably fighting off the infection), then couldn’t sleep all night.
The ICU is a strange place to be conscious at night. And a damned hard place to sleep. Sometimes it’s a place of life-and-death chaos, with the frequent sound of alarms indicating somebody’s heart has stopped beating, critical patients being stabilized (hopefully), then moved onto a helicopter that’s landed (outside my window) for a quick flight to a trauma center, while staff argue about an unsigned release form -- or patients dying, and being wheeled down to the morgue, while the custodial staff comes in to clean and disinfect their room. And sometimes it’s a place of noisy boredom, as residents wired on coffee and caught up on their rounds loiter at the nurses station (just outside my door) making small talk about buying some $100,000 piece of diagnostic equipment for a specialized practice, figuring how they could pay that off in a year with just 20 billable hours per week. But even when it’s sorta quiet, just the steady hum and gentle beeping of innumerable machines, you’ve got so many tubes and wires taped, glued and clamped onto you, that changing positions in the bed is a project, and no position is truly relaxed. Pretty much you need to be exhausted or drugged to sleep deeply or long.
So I didn’t sleep. Maybe that was some side effect of the assorted anti-biotics, which were winning the war against the infection, or whatever drug they were administering to keep my fever down. But by now I was completely bored with the usual offerings of cable television. So I laid there awake, feeling trapped, and particularly alone. (No one came into my room for many hours; as I could hear, too many people were dying on the ward that night. That seemed like important business; so I filled two available urinals [picture odd little plastic pitchers for collecting and measuring pee], before calling a nurse to empty them, and asking for more drinking water.) And in the course of the night, I rode this wave of depression and dove into it, indulging in several hours of dark reflection.
Until, as the sun rose and the night shift got ready for the changing of the guard, I emerged from fever on a new shore, where depression had given way to anger. I was fed up, and I wanted out of this fucking place. Which is how, in the wee hours of that morning, I found a new focus, and resolved, from that moment forward, to devoted my energy, my every action, word and interaction, to one single mission: getting released from the hospital. And I came up with a plan.
My days being wheeled in and out of various departments of the hospital, and interacting with the various staff, had taught me a few things about how the place was run. And one thing I now realized was how little direct communication there was between all the different people who cared for me. Modern medicine is a complex business, but unlike in my own highly specialized business, no one person truly oversees any single project (i.e. patient). The ship of medicine has a large crew of sailors and highly specialized officers, but it has no captain. And the crew are all so very busy attending to their many individual responsibilities, that they hardly have time to confer with each other. So there isn’t even an active committee in charge. Mostly, they just leave each other notes, in your chart, which they don’t always have time to read carefully; and the nurses talk at shift change, which seems a little rushed, especially if somebody’s dying at the time.
Which meant the only person that they ALL interacted with, was me.
I resolved to use this fact, and each of these interactions -- to use this little power -- to the furtherance of my goal. Beginning that morning, whenever I spoke to anyone, no matter their position in the hospital hierarchy, I steered every conversation to the next action I wanted, and I always spoke as though that action had already been agreed to by everyone concerned. And it’s kinda amazing and alarming how well that worked.
I took it one step at a time. I hadda work the system. First I had to make the ICU staff believe I was too healthy to be there. Gradually I disconnected monitors and apparatus, as though someone else had approved that. I timed things around shift change, or after one of my four doctors came by at the end of his or her busy day, or just before going into surgery or offsite (and thus wouldn’t be heard from again for many many hours). At the beginning of a shift, I just started doing more things for myself, as though that had been the SOP throughout the last shift. The more I “stayed on message”, always talking about the next action I wanted, the more it was on everyone else’s radar, and they started talking about it. When the new on duty nurse spoke to a different one of my specialists, or the new head nurse, the conversation was now about where they were moving me to, when I got released from the ICU. Before you knew it, they were already deciding to whom they were gonna give my ICU bed. And by the time another doctor visited, he was saying the same thing I had first said to a nurse that morning.
Mind you, I doubt I could have gotten released from the ICU if I wasn’t well enough. But, having spent days witnessing the way that uncertainties and new revelations about my condition affected the decision making process, I had a better understanding of how much grey area exists in medical diagnosis and management. I’d also observed a good deal of inertia in the system, seen the status quo hold only because everyone was busy with other things, too preoccupied to push one more cart just now. So I pushed it. And, really, all it took was a nudge, at the right moment, at the tipping point, wherever the system was off balance, whenever people were off guard, distracted, or suggestible. That’s when and where I could effect change. And that’s how I got myself out of the ICU, and once again back in the pediatric ward, more quickly than the last time.
From there, the next step was to look and act like somebody that had no business being in a hospital, at all. For days, I had been declining any pain killer that made me dopey or sleepy. Now, finally untethered from everything except an IV, I took multiple walks up and down the halls of the ward, day and night, each time longer than the last, being sure all the staff saw me smiling and on the move. Since the casters on the pediatric ward’s IV stands were all broken, I practically carried the whole thing with me. I let them see that, too. I made my personal hygiene a top priority. This had been exceedingly difficult, tethered to a bed in the ICU. Now I insisted that the day nurse show me where there was a shower (down at the end of the pediatric ward), providing me with towels and Johnson’s baby shampoo. (If you didn’t ask for this, no one bothered to offered.) I had my civilian robe and clothes brought from home, and I started wearing them at the hospital. I stayed out of the bed, opting for a chair; and setting up my laptop on an extra cart, like a small desk, I was seen getting work done, and heard playing upbeat music in iTunes. (It turns out, my surgeon -- about my age -- was a Gang Of Four fan, back in the day.)
Oh, and not to impress anyone, but simply to nourish myself, I begged everyone who came to visit me to bring real food from outside. I just couldn’t eat the food the hospital prepared. I’d lift the lid, catch a whiff, immediately put the lid back down, and desperately scavenge the tray for some morsel they hadn’t screwed up, like crackers. I thought I’d lost all appetite. But oh my god. Food has never tasted so good as that first sandwich from Rio Grande Cafe: thick slices of fresh roasted, pepper-crusted turkey breast, with garlic mayonnaise and romaine lettuce, on fresh baked baguette. I devoured it in bliss. And I could feel every cell in my body come alive, as every molecule of sandwich was absorbed into my being. I’ll never forget that sandwich. Thanks, Mom and Dad!
In the end, it took...
2 days for the damned Infectious Disease specialist to actually SHOW UP ... er ... send his physician's aide, to write a simple prescription for oral anti-biotics, so I could get off the damned IV and be discharged. (By this time, my left arm was swollen and inflamed from all the needles that had been stuck into it day and night.) The surgeon had approved my discharge on Monday, but the I.D. doc was no show for 2 days. Such was the limit of my new strategy, which otherwise capitalized on the distracted behavior of medical professionals.
In those last days, I wiled away many hours analyzing everything that is wrong with the health care industry, designing several alternative health care systems in my head. Only one of those systems was socialistic; surely capitalism is also capable of much greater efficiency than the current system. I had coped pretty well with the indignities and inconveniences of hospitalization. But the inefficiencies and in-competencies inherent in using a 19th century organizational model, devised for industry in the early days of mass production, now applied to highly specialized 21st century medical tools and knowledge, drove me nuts the longer I saw it in operation.
In an age where I can have a fresh baked pizza delivered to my door in 30 minutes, waiting 6 hours to get a single Motrin from the pharmacy is ridiculous. Hell, even malnourished in a wheelchair with my guts stapled together, I could have gone to the nearest chain drug store and back, in a fraction of that time. I started adding up how little time the staff actually got to spend with each patient, relative to the large sums we’d be billed per day, and compared that to the relatively meager cost of renting a hospital bed and basic monitoring equipment in my own home, hiring both a day and a night nurse to be with me (and only me) 24/7, hiring a cook for a few hours a day, having the doctor(s) phone-in prescriptions to a nearby pharmacy, while paying a courier to pick them up. All of which would be cheaper, faster, and more attentive -- to say nothing of far more comfortable and relaxing -- than the care I seemed to get in the hospital. And, in the event of a medical emergency beyond the abilities of my nurse, I could take an ambulance to the nearest emergency room, or even a helicopter to the trauma center -- which is not so different from what I saw transpire in the ICU, under the same circumstances.
You know your vitality is on the mend and it’s time to check out, when you have the energy to be angry about every inadequacy of hospital care. And all you can think about is strategies to get out. It’s a sign that you’ve stayed too long. I had my modest collection of personal possessions packed 24 hours in advance of my eventual discharge. Only my lack of the appropriate antibiotics kept me from walking out the door. Once I got that, it took me...
10 minutes to get to Rio Grande Cafe. (Stopping by the drug store could wait.)
I'm very happy to be out, where I'm recovering more quickly. I've been driving my stick shift, cooking yummy food, catching up on my laundry, pacing myself but working full days, and just got back from a 3 mile walk on the beach. I haven't had any painkillers since two days after my surgery. (Except the occasional Motrin, to treat the painful inflammation in my arm.) And, thanks to the hospital starving me throughout my stay, I'm the skinniest I've been since my twenties. In eleven days I lost about 30 pounds, and all my muscle tone, to say nothing of many pints of blood. So I'm trying to eat more protein, and iron rich foods, and drinking plenty of liquids. Tonight I'm cooking shitake spinach baked ziti. Mmmmmmm.
Next week, I get the staples taken out, and then all restrictions on my physical activities (no heavy lifting or swimming) are lifted.
I hope to let at least a couple decades pass before I again suffer such a medical condition that the advantages of hospital care outweigh the problems. Fingers crossed.
Saturday, 22 October 2005
