CHEATING DESTINY: Living With Diabetes, America's Biggest Epidemic
by James S. Hirsch
Copyright © 2006 by Houghton Mifflin.
Excerpted with permission of the publisher, Houghton Mifflin.
NOTE: Excerpts are provided on dLife.com for informational purposes only. The information contained within will not be updated by dLife and may be outdated. Please consult your doctor before acting on anything described here.
Excerpted from Prologue ***
My son is thirsty.
For most parents, that sounds rather harmless, one of many needs that any three-year-old has. At first, Garrett's request seems particularly innocuous. He has always preferred drinking milk or juice to eating. His constant running and playing would dehydrate any child, and he shows no sign of illness. But when he looks up at me and says, "Daddy, I'm thirsty," and says it repeatedly over several days, I wonder if the damage has already been done.
Soon, Garrett's complaint becomes more urgent, and the water flows right through his small body, causing frequent trips to the bathroom. I try to break the cycle, telling him he's had enough to drink and hoping that his craving will go away. But still he drinks. He is potty trained, and he does all he can to hold the tidal wave of water coursing through him. On several occasions, he groans in his sleep to avert wetting his bed. I rush into his room, hustle him into the bathroom, and yank down his pajamas just in time. Splash! The urine rushes out like water from a firehouse. A couple of times, the force is too great, and he pees in his bed.
"That's okay, buddy," I tell him. "We just can't drink so much water at bedtime."
I am hoping for something, anything, whatever it takes to diminish his longing. But the water has become his lifeline. I watch him hold the glass in both hands, lift it carefully to his mouth, tilt it, and swallow again and again. I had once been thirsty like that. It was many years ago, but I remember it well.
In medical speak, the word is polydipsia – abnormal thirst. It's an early symptom of diabetes, as your body, suffering from elevated blood sugar, pees out the excess glucose, triggering the demand for more water. As the disease progresses, the body burns its own fat for energy, leading to a similar cycle of insatiable hunger followed by rapid weight loss. These are signs of type 1 diabetes, which is usually diagnosed in juveniles and is treated with insulin.
I was diagnosed with type 1 at fifteen, and like every parent with diabetes, I scrutinize my kids – we also have an older daughter – every day for symptoms, real or imagined. Hunger. Thirst. Fatigue. Weight loss. Emergency trips to the bathroom. Slow-healing cuts. Crankiness. Unusual cravings. Any aberrant behavior could be a sign, however tenuous, of disorder in a child's finely tuned metabolic system. As a diabetic, I learned early on that the price of health is eternal vigilance, but as a parent, the price of devotion is chronic paranoia.
Garrett, at this stage, displays no other symptoms. He hasn't lost weight, increased his appetite, or complained of tiredness. On the contrary, he could not have looked any better or behaved any more vibrantly, a high-spirited little boy with tousled sandy hair and limpid brown eyes. His pre-school teachers call him "Smiley" because he's always laughing. He loves sports – running, tackling, kicking a soccer ball – and is already hitting live pitching in our driveway. He's strong willed, which is a nice way of saying he's stubborn. One night, we heard a loud thump in his room. He had climbed out of his crib and crashed to the hardwood floor. We figured he had learned his lesson and put him back in his crib. Minutes later, thump! He had repeated his escape and was once again on the ground. At eighteen months, he was out of the crib. His pediatrician says that pound for pound, he's the strongest patient she has.
But all signs of health are now misleading. A nagging cold has slowed him down, and despite my coaxing, his desire for water never diminishes. Events take an eerie turn one day in September, when I interview Jeff Hitchcock in Boston for this book on diabetes. Hitchcock's daughter, Marissa, was diagnosed in 1989. Finding little medical information, he started a website on diabetic children from his home in Hamilton, Ohio. The site has been so wildly successful – 193,000 hits per day from more than 140 countries and a raft of advertisers – that Hitchcock quit his engineering job, and he now organizes conferences and programs as well. He is revered by parents who feel neglected by health care professionals but find his site informative and comforting. When I meet Hitchcock, I understand his appeal. A lean man with graying hair, glasses, and a soothing demeanor, he speaks optimistically about the day when improved therapies will eliminate diabetic complications. But he also has stinging criticism for the medical field. This combination of hopefulness and frustration resonates with any diabetic. Asked what the success of his site reveals about diabetic care in America, he says, "It stinks." And what should parents do if their child is receiving poor care? "Fire the doctor," he says. "That doesn't happen nearly enough."
That night, Garrett complains during his bath that his feet and legs hurt, and he again drinks several cups of water. He goes to bed but wakes up around midnight, saying he doesn't feel well. He is thirsty, but I tell him he just had a drink a few hours ago. He again goes to the bathroom and, sniffling and achy, he climbs into our bed. I look at him in his baseball pajamas, pale and uncomfortable. Until now, I have not mentioned anything to Sheryl about my fears. She knows about the genetic risks of diabetes, but when I tell her that I'm going to test Garrett's blood sugar, she's surprised.
The glucose meter measures blood sugar in milligrams per deciliter, the normal fasting range between 80 and 125 mg/dl (4.44 and 6.94 mmol/l); so 125 is the magic number – anything higher will be a sign of diabetes. I take my lancet and quickly poke Garrett's finger to draw a drop of blood. He is too groggy to complain or even notice. The blood comes out easily in a thick, gooey drop. The older meters took thirty seconds or even a minute before reading the value, but the newer meters – mine is a OneTouch Ultra from Lifescan – has a five-second countdown. I place the drop of blood on the test strip and prepare myself. But whole thing is anti-climatic. I already know the result.
The machine reads: "HI."
I have never seen such a reading and am momentarily confused. "HI?" Why the hell is the machine suddenly greeting me? No, no, no. Not "HI" as in "HELLO." But "HI" as in "HIGH." As in real "HIGH." As in your entire life has just changed. I curse Lifescan under my breath. With the millions of dollars it makes off diabetics, you'd think it could afford to put two more letters on an elevated glucose reading, instead of subjecting us to this incongruously cheerful, heartbreaking welcome.
"He's high," I tell Sheryl. "I think we'll have to take him to the hospital."
She grabs Garrett and hugs him, and will soon dry her tears with the blood-stained tissue that I used to wipe Garrett's finger. I get him a water bottle and apologize for not letting him drink more. I have tried to deny his body's downward spiral, to will it back to health by limiting his fluids and refusing to acknowledge reality. But my son is thirsty. "Here, buddy, drink this," I say. "Drink as much as you want."
I call my brother, Irl, who's had diabetes since he was a child and now, as an endocrinologist, runs a large diabetes clinic in Seattle for the University of Washington. He asks if Garrett had ketones, a fatty acid burned by the body of an uncontrolled diabetic and spilled out in the urine. Almost 1,900 diabetics die each year from ketoacidosis, and a small child, once ketonic, can swiftly become fatally ill. A simple urine test can determine the presence of ketones. I tell my brother at this point I don't know Garrett's status, but I will keep him posted.
Sheryl calls Garrett's physician practice, but with no one on call, the operator bounces us to another practice. A doctor finally gets on the line and tells us to take Garrett to Children's Hospital Boston, about a half-hour drive from our house in Needham. I had been across the street from this hospital earlier that day to interview Hitchcock at the Joslin Diabetes Center. We talked about his website, "Children with Diabetes." Now I will be returning that night, with my son in the back seat – a Child with Diabetes.
Our six-year-old daughter, Amanda, is sleeping, so Sheryl stays home while I take Garrett. When he sees Sheryl packing his overnight bag, he's excited. "Are we going to a pajama party?" he asks.
"No, buddy," I say. "We aren't going to a pajama party."
I tell him we're going to the hospital, without explaining why. He has never really been sick and hadn't been to the hospital since he was born. We load up the Honda Pilot, and Sheryl gives Garrett and me kisses good-bye. We wheel out of the driveway, briefly hop on the highway, then take Route 9 toward Boston. The road is normally chaos, but now it's dark and quiet, with street lamps splashing islands of light on the pavement. The city is at peace. Soft music drifts through the car. Still in his baseball pajamas, Garrett looks calmly out the window, probably thinking he's on some small adventure, a late-night ride to the hospital – or "HOTH-i-bal," as he calls it (with slight, endearing lisp) – something he can tell his friends about tomorrow.
We arrive in the Emergency Room at 2 a.m., with Garrett in my arms. The place is empty. A man at the information desk points me to a woman in a cubicle who will handle admission. We sit down.
"Do you have insurance?" She does not look up.
I guess if you enter a hospital in the dead of night with your son bleeding from an open wound, choking, or screaming, someone will first inquire if you need medical assistance. Otherwise, reimbursement takes priority.
"Yes, we have insurance."
We are sent to a room where a nurse takes some information and Garrett is weighed – thirty-three pounds. Then we move to another room. Garrett sits on my lap, and I assure him that everything is going to be okay. He doesn't ask any questions as hospital staffers drift in and out with glucose machines, needles, tubes, and other devises. It appears that we are the only customers on the floor, and a calm settles in. But that soon ends.
The nurses' first task is extracting Garrett's blood. They initially use a lancet to get a drop from Garrett's finger, which they test in a meter. But now they need tubes of blood, not just drops, so they have to draw it from his vein. I hold Garrett on the table while one of nurses positions the needle above his arm. She drives it through the flesh, and Garrett lets out a scream unlike any I have ever heard. Shocked by the attack, he yells, squirms, grits his teeth, and howls some more. "Daddy, that hurts me! Daddy, that hurts me!"
"I know, buddy, but they're almost done. They're almost done."
But they aren't. The nurse pulls back the plunger but draws no blood. She tries rotating the needle, increasing the pain and drawing more resistance from Garrett. But she has missed the target, so she withdraws the needle and plunges it again into his arm. Garrett tries to escape but I hold him down, tears rolling down his reddened face, yelling again, "That hurts me! That hurts me!" The nurse explains that it's often hard to hit a vein in a young child and says she will try the back of his hand instead – which, for my money, does not seem particularly promising. I've had blood drawn well over a hundred times for diabetes-related tests, always from the arm. The puncture stings, but at least the arm has some cushion, while the hand is as hard and unforgiving as parched earth.
The needle lunges into Garrett's hand, and this time he closes his eyes and cries even louder. And still no blood. The nurse again maneuvers the needle, fruitlessly inflicting more pain until giving up. I realize I should have said no to the gouging of his hand, and while Garrett has not even been officially diagnosed yet, I have learned a crucial lesson. Do not assume his health care providers know what the hell they're doing.
The nurse eventually hits the vein in his left arm, and somewhere amid the screams and tears and struggle the blood is drawn. I'm certain that it wasn't just the needle that hurt. Garrett is also confused and angry. He has done nothing wrong, but now it feels as though he is being punished. I try to explain, but how do you convey the enormity of a chronic, life-threatening disease to a three-year-old? How do you say that you have to take insulin for the rest of your life, that you will be denied many foods, that you may pass out from low blood sugar, and that every organ in your body is now at risk?
"Garrett, I know it hurts, but you have a boo-boo inside your body, and we have to make it better…I'm so sorry, buddy, but we have to make it better."
I ask a nurse about Garrett's blood sugar. "It was high," she says, "but we don't have an exact reading." Great. Hospital's got the same damn meter I have.
Garrett's night has just begun. His arm is wrapped with gauze and taped to a plank of wood, keeping the limb straight and allowing an intravenous tube to be inserted. The tube is attached to a bag of saline, which will help rehydrate him until – as the doctor later explains – Garrett becomes "metabolically stable and able to eat on his own." The precaution is understandable. Most newly diagnosed children have been sick for some time and require aggressive intervention. In Garrett's case, he was never so ill that he couldn't eat or drink, and he may have been fine even without the IV. But now he can't bend his arm, and he struggles to free it from the plank. The nurses also places a tube in Garrett's nose to determine if he is exhaling carbon dioxide, which occurs during ketoacidosis and would signal the severity of Garrett's condition. The device is one more uncomfortable entanglement.
A nurse returns with some information: Garrett is not ketonic but his blood sugar was 550. I know how achy and uncomfortable I feel when my blood sugar spikes to 300. Even though he was almost twice that, he did not ask to stay home from pre-school or sit out any activities. I'm sure he's been running high for weeks, but with the exception of his thirst, he rarely complained about anything. Tough kid.
By 4 a.m., exhaustion has worn him down. He still fusses with the tube in his arm and the intolerable stick of wood, but he finally falls asleep. At some point, he is given his first injection of insulin.
Garrett had experienced pain before. Shots from the doctor. Scraped knees. A bumped head. Of course he has cried. But never this. His short life had mostly been kisses and hugs and cuddles, always very physical and affectionate, and his outpouring of love and energy was always reciprocated by those who adored him. Now, this. He's been robbed of his childhood, I think, and he will never know what life is like without diabetes. Then again, I was diagnosed at fifteen, and I can barely remember myself.
Friends will later tell me that Garrett is fortunate to have a diabetic for a father, but I'm not sure. Most parents with a newly diagnosed child fear the unknown. In my case, I knew too much.
When the sun comes up, we are in Garrett's hospital room, and he is finally relieved of the tube in his nose and the IV in his arm. Garrett enjoys pushing the buttons on the retractable bed, and television cartoons bring some relief. A nurse comes in, and I tell her that we have to be out of here in a couple of days because Garrett has a soccer game on Saturday. She pokes his finger for a morning blood sugar. "It's 279," she reports.
A weird sense of elation suddenly comes over me. This much I understand: before he got to the hospital, before he received his insulin and his IV tube and his saline, my son was dying. It wasn't imminent, but he was dying, his body unable to fulfill its most essential function – converting food into energy. Eighty-two years ago, before the discovery of insulin, he would have suffered a swift, miserable death, perhaps fading slowly at first but then rapidly and inexorably. If he were lucky, he may have been put on a starvation diet, which would prolong the agony but not change the outcome. That would have been his fate, his destiny, as it had been for countless others in the three millennium since this disease was first recognized.
But the insulin saved him, so for the moment I do not despair over his burdens but feel a surge of happiness. My son is no longer thirsty. ***
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Playing off of a #DSMA conversation and Kerri, one of my favorite bloggers at www.sixuntilme.com, I've concocted a job description for diabetes. Wanted Immediately! Extraordinarily patient individual with high pain tolerance, ability to multitask as if their life depends upon it, must be able to keep a stable job with solid health insurance (outside of the work described herein), able to stay up late and get up early, and undeterred by constant shifts in...