Friday 27 April 2018
Field Notes from a Medicare Disaster: One
Medical mysteries are like Tolstoy's unhappy families-- none is mysterious in exactly the same way. As with any other suspense story, each new clue seems relevant, salient, and vital--until it's replaced by the next. And there's always a next.
I don't remember when I first noticed that something was not right with him. I'm pretty sure it was after granddaughter number one made her way into this world, so not that long ago. I was surprised, even irritated, that he declined to go for long walks, that he declined to dance. He used to love a good walk, was enthusiastic on a dance floor, even on the kitchen dance floor. At first I took it personally. He's done with me, I thought. What do you expect after so many years squabbling and loving each other? So there was nothing really wrong, nothing to worry about: after all, he was still playing tennis, wasn't he? But then his enthusiasm for that began to fade too. He had been an avid player for thirty years, ever since those private lessons from a pro on a private court in L.A.'s Mandeville Canyon. After he acquired his cruel serve, he loved running for hours under a blistering sun, pouring monsoons of sweat while sizzling aces past much younger men, men less than half his age.
There were twists and turns to this developing not-rightness, but let's just say that in retrospect, it must have started long before he paid attention, long before he stopped walking unless he had to. Moments of obvious illness were so transitory. Stomach issues came and went, though he had enjoyed an iron gut (except when migraines kicked in, but they'd stopped decades ago, ever since they shut that coal-fired plant near the downtown core). He was a fan of TexMex and Sichuan and Indian curries hot enough to make steam rise off his scalp. But suddenly he was seized by the runs. We searched through science articles online, read the new work on the microbiome. It raised this question: could it be that the antibiotics his doctors and dentists had shoveled into him for sinus infections and root canals had killed some important biota in his gut? Or was he developing IBS? Or Crohn's? A gastroenterologist examined him with a scope, found inflammation, prescribed yet another antibiotic and after examining him once more a few days later, assured him he didn't have either, just a little stray inflammation which had disappeared entirely. After that, he loaded up on probiotic yogurt whenever he was prescribed an antibiotic. It helped. We put the gut issue down to sliding into his sixties. As one clever elder cousin likes to say, aging is a long surprise.
And so it is: it turned out that all that was prologue. At some point, he acquired a new posture. His arms slumped forward when he was standing still and his head drooped. He couldn't seem to make his arms swing in a coordinated fashion when he walked. He said there was something wrong with his left thigh, and sure enough, calcified scar tissue was discovered there, the result of a muscle tear ( yes, a tennis injury) that had to be broken down with ultrasound, followed by physio. But the physio didn't seem to help: his walk continued to change. His feet made sssshing sounds on the pavement. I had always been able to spot him far off, even on a crowded street, because of the sway of his big shoulders, the way his feet kicked from side to side, a confident, rollicking, even arrogant stride. I shouldn't be hearing your feet drag like that, I thought, I should be hearing your heels hit the pavement first. What is that about?
Then he began to say he felt unsteady. Not dizzy. Unsteady. What in hell is the difference, I'd ask. He couldn't explain but he was adamant. Unsteady was how he felt. I'd like to be able to say exactly when this all added up to something that said go get medical attention, but the best I can do is create a crude divide between good and not-so-good. Thirteen years ago he was still so strong that he helped paramedics carry one of his oldest friends, brought home in an ambulance from a hospital to die, up to his bedroom at the top of a long, steep flight of stairs. If he was breathless, I didn't hear it. Ten years ago at an August wedding in Israel I almost passed out from the crazy-making heat and humidity, but he barely noticed, thanks to tennis, and my gut went haywire after a lovely dinner party, not his. Nine years ago he was perfectly fine, overseeing a prototype turbine installation for testing down in PEI. Five and a half years ago he was still playing tennis and a picture shows his grandchild number one swinging off his left arm as they walk up from the beach to the car. He's carrying a loaded beach bag with the other arm. He is perfectly steady. His feet are moving the way they always had and his shoulders are as they should be. Yet I do remember he was not altogether right that day. The gut was acting up again.
Later that summer, one of his associates screamed at me to come quick, he was on the back deck but he was unable to rise from a bench. I was irritated. Big deal, I thought, he's a little wonky, it's a hot day. I went out, saw he was somehow stuck between standing up and sitting down, called his name, got an incoherent response. I felt his skin: he was burning up. I sent his associate scrambling for help from the neighbors. Working together, we still couldn't get him upright so we let him slide down to the deck. His temperature was 103, his pulse fast and thready. I had to cut his shirt off to cool him down.When the ambulance came he couldn't cooperate with the paramedics.
They took him to a downtown teaching hospital, part of the University Health Network. So we are speaking of one of the best hospitals in the country, in the top tier in the Western world, the kind of hospital medical students hope to do their residency in. In the emergency, they diagnosed sepsis and hit him with an intravenous antibiotic bomb. That night, there being no beds available on the wards upstairs, he stayed there on a narrow gurney. He wasn't happy. He tried to climb off it, over and over, tried to pull out his IV too, because he was that out of it. He was still out of it the next day, and the day after that. What brought this on? There had been something dental the week before, no antibiotic given, was that the cause of this whole body infection? Finally, after two days, they found a bed on a ward for him, the gerontology ward to his dismay, the same ward his mother-in-law had been on a few months earlier. She is 25 years his senior.
"I'm not old," he kept saying. "Why am I here?"
"Well technically you are," said the young doctor he complained to. "Anyone over 65 is old."
"I beat men half my age at tennis," he said, meaning age has nothing to do with chronology.
That ward had locked doors leading to the stairwells and the elevators, and there were security guards hanging around, the first time I'd noticed security guards on a ward as well as at the entrance to the emergency where wild behavior does occur. Actual old people wandered these halls with their gowns flapping open, muttering. One elderly woman repeated the same undecipherable phrase over and over as she poked her head into his room, tapped the floor with her metal cane. Musicians sometimes performed in the lounge area, no doubt to soothe these savage ancient breasts. He didn't attend, not being ancient or savage, and besides, getting up to walk was hard. He'd tire after a few yards and had to use a walker to steady himself. As my father was no longer in this world and no longer available to consult, I looked up sepsis on Google because I could never seem to find the leader of the team in charge of his care to get an explanation. The individuals on the team seemed to change every third day. I was shocked to discover sepsis could have killed him because none of the team had bothered to explain. The nursing care, on the other hand was excellent: on time, more than competent,yet there was something missing from it too. I didn't identify it until much later, when he was in another hospital which has a different culture of care. ("No one is malicious here," one of the nurses there later said," we make mistakes, yes, but we get rid of the malicious ones.") The quality that was missing in this first hospital was kindness. The care was efficient, brusque, unsympathetic. And the parking was shockingly expensive.
And one more thing: while he was there, his own family doctor never came to see him. When my Dad was in practice, a patient's family doctor often went to see his/her patients when in hospital, even if they had no hospital admission privileges and their patients were therefore under another doctor's care. There were good reasons for this, starting with the most obvious: the family doctor knows the patient intimately, knows the history, can advise on past issues, when the patient himself is unable to explain. This is not such an important safeguard when the patient has a family who come to the hospital daily and have some knowledge of the patient's history. But in a society like ours, now, where diversity is our strength, and many of us have left families behind on another continent as we struggle to put down new roots, it can be downright dangerous. As you will see.
He didn't notice his doctor's absence. He was more interested in the flocks of students who came in to examine him. They asked interesting questions about him and his work. He asked interesting questions about theirs.
Soon he was better and then better still, though his digestive tract remained in an uproar from the massive antibiotic assault. A daughter spoke to a nutritionist who recommended a strong course of probiotics, not the pap available in commercial yogurts, but a pill containing several live strains, only on offer at health food stores. He took them for a short time, improved rapidly, and came home.
The dentist was advised to use antibiotics in advance of treatment in future. And from that time forward I paid sharper attention to how he was doing. I noticed little things that I couldn't explain. He'd slump to the side when his office was too hot, or if he was eating outside on a hot summer night, like a plant drooping from too much heat. He didn't notice: I had to remind him to sit upright. He'd try. Then he'd slump again. He went to see his family doctor, a wonderful diagnostician who still used his hands and his ears and his eyes to examine his patients, an old school kind of doctor trained in Ireland. There might be a neurological issue, he said, after watching his new walk. He made a referral to a neurologist. A daughter conferred with a gerontologist in the UK who had theory regarding too much fluid washing through the ventricles of the brain. He should be examined for that, he said. Six months passed before the neurologist could see him, and then several more months for a CT scan.It showed brain shrinkage but nothing out of line for a man his age. The neurologist ruled out Parkinson's. I had no clue why he had considered Parkinson's, but since he'd ruled it out, I forgot about it.
A dear friend of mine died suddenly. There was a memorial that spring. He sat in the back, didn't mingle, which was really unusual, and was grateful he didn't have to walk too far, that there was an elevator. After it was over, he sat on a bench outside in the sun waiting for me while I said goodbyes inside. I found him slumped to one side, needing help to stand up on his own. The husband of my dead friend said: hey, what's going on, he doesn't look well. And it was true: this was a marked change. He had helped them pack their house a year earlier when they decided to move to another part of the GTA.
A few weeks later he had another bout of sepsis, again following a dental something. By then, walking had become a significant issue, too much heat another. I thought exercise would help, the brain being a highly changeable, use it or lose it kind of place according to a new school of neuroscientists. He bought Nordic poles to see if he could retrain his brain along with his walk, get into the swing again.
And so we come to the summer of 2015, two and three quarter years ago.
We decided to go to a cottage with our eldest and her family for a few days though we have always known that taking vacations in Ontario usually ends in disaster for us ( usually someone gets sick, or someone dies, or a tornado tries to take us out on a highway). Let's not call it a vacation, it isn't really a vacation, I said to him, it's a time out, it will be fun. We'll take the poles, you'll walk.
He did take the poles. He did walk.
Friends came to visit. We sat on the grass by the lake for hours, talking, laughing. Well, they did and I did. He was quiet. After a few hours, he got up to go to the bathroom in the cottage. It was on top of a hill, reached by a long run of stone steps with a stone embankment at their base. He was unsteady getting up: I asked if he wanted a hand on the steps which had no rail. I'm fine, he said, and walked past me.Then someone screamed, the eldest. She lay her baby on the ground and ran past me. I turned to see where she was going, appalled that she had put her baby, grandchild number two, on the grass like that, only to see him sprawled at the base of the stone embankment, blood pooling from his head. He was out, completely out. Three frantic minutes went by as we tried to get the blood stopped, called for an ambulance, checked his vitals, called his name. His pallor was such that I thought he was next to gone. Then his eyes flickered open and his life started again. The ambulance came and the paramedics got him on a back board with his head immobilized. I jumped in the front seat of their van with some of his clothes. They drove with the siren going to a local hospital, one that had no overnight beds and only one doctor in the emergency-- on a summer weekend in cottage country. The doctor did an X-ray, determined there was no skull fracture, picked stone chips out of his scalp and then called for medical evacuation.He was not really coherent, couldn't explain to the doctor what had happened to him, was too sleepy. It took two hours for the next ambulance to come. The paramedics put him in the back, told me I could ride up front. We sailed down the highway into the dark night, going so fast, so smooth and fast, like an iceboat sailing across a frozen lake. The speed would have been terrifying if I had room for that kind of terror. I was 100% focused on the idea that he might be dying behind me on that backboard. He kept asking if he could turn over on his side. Not yet, sorry, the paramedic sitting with him would say. Over and over and over.
Two and a half hours later, at about three o'clock in the morning, I sat in a dark room in the trauma center at St. Michael's hospital waiting for a verdict. A doctor came in and said he was okay, he had no skull fracture, no brain bleed, he was going to be transferred to a ward, I should go home.
I breathed a huge sigh, and went out into the humid night, got in a taxi, slept at home. Trying hard not to think, trying hard not to focus on the most important question: why had he fallen like that? Why couldn't he remember? Had he misplaced his foot on the bottom step? Or had he fallen because something went awry in his brain?