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Cheating Destiny: Living with Diabetes, America's Biggest Epidemicby James S Hirsch
My son is thirsty.
For most parents that sounds rather harmless, one of many needs that any three-year-old has. At first, Garrettand#8217;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, and#147;Daddy, Iand#8217;m thirsty,and#8221; repeatedly over several days, I wonder if the damage has already been done.
Soon Garrettand#8217;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 heand#8217;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 fire hose. A couple of times the force is too great, and he pees in his bed.
and#147;Thatand#8217;s okay, buddy,and#8221; I tell him. and#147;We just canand#8217;t drink so much water at bedtime.and#8221; 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 and#151; abnormal thirst. Itand#8217;s an early symptom of diabetes: your body, suffering from elevated blood sugar, pees out the excess glucose and triggers 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 treated with insulin.
I was diagnosed with type 1 at fifteen, and like every parent with diabetes, I scrutinize my kids and#151; we also have a six-year-old daughter, Amanda and#151; every day for symptoms, real or imagined. Hunger. Thirst. Fatigue. Weight loss. Emergency trips to the bathroom. Cuts that heal slowly. Crankiness. Unusual cravings. Any aberrant behavior could be a sign, however tenuous, of disorder in a childand#8217;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 hasnand#8217;t lost weight, increased his appetite, or complained of tiredness. On the contrary, he cannot look any better or behave any more vibrantly, a high-spirited little boy with tousled sandy hair and limpid brown eyes. His preschool teachers call him and#147;Smileyand#8221; because heand#8217;s always laughing. He loves sports and#151; running, tackling, kicking a soccer ball and#151; and is already hitting live pitching in our driveway. Heand#8217;s strongwilled and#151; a nice way of saying heand#8217;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 the crib. Minutes later, thump! He had repeated his escape to the floor. At eighteen months, he was out of the crib. His pediatrician says that, pound for pound, heand#8217;s the strongest patient she has.
But all the signs of health are now misleading. A nagging cold has slowed him down, and despite my coaxing, his desire for water continues to be strong. Events take an eerie turn one day in September 2004 when I interview Jeff Hitchcock in Boston for this book. Hitchcockand#8217;s daughter, Marissa, was diagnosed with diabetes in 1989. Finding little medical information, he started a Web site about diabetic children from his home in Hamilton, Ohio. The site was so wildly successful and#151; 250,000 hits per day from 149 countries and a raft of advertisers and#151; that Hitchcock quit his engineering job and now organizes conferences and programs as well. He is revered by parents who feel neglected by health care professionals and 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 that improved therapies will eliminate diabetic complications. But he also directs stinging criticism at the medical field. This combination of hope and frustration resonates with any diabetic. Asked what the success of his site reveals about diabetic care in America, he says, and#147;It stinks.and#8221; And what should parents do if their child is receiving poor care? and#147;Fire the doctor,and#8221; hhe says. and#147;That doesnand#8217;t happen nearly enough.and#8221; That night, Garrett complains during his bath that his feet and legs hurt, and he again drinks seeeeeveral cups of water. He goes to bed but wakes up around midnight, saying he doesnand#8217;t feel well. He is thirsty, but I tell him he just had a drink a few hours earlier. He again goes to the bathroom and, sniffling and achy, climbs into our bed. I look at him in his baseball pajamas, pale and uncomfortable. Until now, I have not mentioned anything to Sheryl, my wife, about my fears. She knows about the genetic risks of diabetes, but when I tell her that Iand#8217;m going to test Garrettand#8217;s blood sugar, sheand#8217;s surprised.
The glucose meter measures blood sugar in milligrams per deciliter. The normal fasting range is less than 100 mg/dl. Between 100 and 125 represents and#147;impaired glucose fasting,and#8221; so 125 is the magic number and#151; anything higher is a sign of diabetes. I take my lancet and quickly poke Garrettand#8217;s finger for 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 to read the value, but the newer meters and#151; mine is a OneTouch Ultra from Lifescan and#151; has a five-second countdown. I place the drop of blood on the test strip and prepare myself. But the whole thing is anticlimactic.
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, 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 from diabetics, youand#8217;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.
and#147;Heand#8217;s high,and#8221; I tell Sheryl. and#147;I think weand#8217;ll have to take him to the hospital.and#8221; She grabs Garrett and hugs him, and will soon dry her tears with the bloodstained tissue that I used to wipe his finger. I get him a water bottle and apologize for not letting him drink more. I have tried to deny his bodyand#8217;s downward spiral, to will it back to health by limiting his fluids. But my son is thirsty. and#147;Here, buddy, drink this,and#8221; I say.
and#147;Drink as much as you want.and#8221; I call my brother, Irl, whoand#8217;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 has ketones, a fatty acid burned by the body of an uncontrolled diabetic that spills out in the urine. Almost 1,900 diabetics die each year from ketoacidosis, and a small child, once ketonic, can become fatally ill. A simple urine or home blood test can determine the presence of ketones. I tell my brother that I donand#8217;t know yet, but I will keep him posted.
Sheryl calls the answering service for Garrettand#8217;s physician; 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 Childrenand#8217;s Hospital Boston, about a half-hour drive from our house in Needham. I had been across the street from Childrenand#8217;s earlier that day when I spoke with Hitchcock at the Joslin Diabetes Center. We talked about his Web site, Children with Diabetes. Now I will return that night with my son in the back seat and#151; a child with diabetes.
Our daughter is sleeping, so Sheryl stays home while I take Garrett. When he sees her packing his overnight bag, heand#8217;s excited. and#147;Are we going to a pajama party?and#8221; he asks.
and#147;No, buddy,and#8221; I say. and#147;We arenand#8217;t going to a pajama party.and#8221; I tell him weand#8217;re going to the hospital without explaining why. He has never really been sick and hadnand#8217;t been in a hospital since he was born. We load up the Honda Pilot, and Sheryl kisses Garrett and me good-bye. We briefly hop on the highway, then take Route 9 toward Boston. The road, normally chaos, is now dark and quiet, with streetlamps 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 heand#8217;s going on an adventure, a late-night ride to the hospital and#151; or and#147;HOTH-ibal,and#8221; as he calls it, with a slight, endearing lisp and#151; something he can tell his friends about the next day.
We arrive in the Emergency Room at 2 a.m., 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 Garrettand#8217;s admission. We sit down.
and#147;Do you have insurance?and#8221; 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 ask if you need medical assistance. Otherwise, reimbursement takes priority.
and#147;Yes, we have insurance.and#8221; We are sent to a room where a nurse takes some information and Garrett is weighed and#151; 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 doesnand#8217;t ask any questions as hospital staff members drift in and out with glucose machines, needles, tubes, and other devices. It appears that we are the only customers on the floor, and a calm settles in. But that soon ends.
The nursesand#8217; first task is extracting Garrettand#8217;s blood. They initially use a lancet to get a drop from his 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 the nurses positions the needle above his arm. As she drives it through the flesh, 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. and#147;Daddy, that hurts me! Daddy, that hurts me!and#8221; and#147;I know, buddy, but theyand#8217;re almost done. Theyand#8217;re almost done.and#8221; But they arenand#8217;t. The nurse pulls back the plunger but draws no blood. She tries rotating the needle, increasing the pain and getting more resistance from Garrett. But she has missed the target, so she removes the needle and plunges it again into his arm. Garrett tries to escape, but I hold him down. Tears are rolling down his reddened face as he yells again, and#147;That hurts me! That hurts me!and#8221; The nurse explains that itand#8217;s often hard to hit a vein in a young child and says she will try the back of his hand instead and#151; which, for my money, does not seem particularly promising. Iand#8217;ve had blood drawn well over a hundred times, 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 Garrettand#8217;s hand, and this time he closes his eyes and cries even louder. Still no blood. The nurse again maneuvers the needle, fruitlessly inflicting more pain until she gives up. I realize I should have said no to the gouging of his hand; while Garrett has not yet been officially diagnosed, I have learned a crucial lesson: do not assume health care providers know what the hell theyand#8217;re doing.
The nurse eventually hits the vein in his left arm, and somewhere amid the screams and tears and struggles the blood is drawn. Iand#8217;m certain it wasnand#8217;t just the needle that hurt. Garrett is also confused and angry. He has done nothing wrong, but 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 he will have to take insulin for the rest of his life, that he will be denied many foods, that he may pass out from low blood sugar, and that every organ in his body is now at risk?
and#147;Garrett, I know it hurts, but you have a boo-boo inside your body, and we have to make it better . . . Iand#8217;m so sorry, buddy, but we have to make it better.and#8221; I ask a nurse about Garrettand#8217;s blood sugar. and#147;It was high,and#8221; she says, and#147;but we donand#8217;t have an exact reading.and#8221; Great. Hospitaland#8217;s got the same damn meter I have.
I call Sheryl on my cell phone to confirm the diagnosis. Of course sheand#8217;s awake. and#147;Heand#8217;s doing fine,and#8221; I tell her. She doesnand#8217;t need to know how much her son is hurting.
Garrettand#8217;s night has just begun. His arm is wrapped with gauze and taped to a plank of wood, keeping the limb straight to allow an intravenous tube to be inserted. The tube is attached to a bag of saline, which will help rehydrate him until and#151; as the doctor later explains and#151; Garrett becomes and#147;metabolically stable and able to eat on his own.and#8221; The precaution is understandable. Most newly diagnosed children have been sick for some time and require aggressive intervention. Garrett was never so ill that he couldnand#8217;t eat or drink, and he may have been fine even without the IV. But now he canand#8217;t bend his arm, and he struggles to free it from the plank. The nurses also places a tube in Garrettand#8217;s nose, to determine if he is exhaling carbon dioxide, which occurs during ketoacidosis and would signal the severity of his condition. The device is one more uncomfortable entanglement.
A nurse returns with information: Garrett is not ketonic, but his blood sugar is 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 preschool or curtail any activities. Iand#8217;m sure heand#8217;s been running high for weeks, but with the exception of his thirst, he rarely complained. 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 has 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 heand#8217;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 tell me later that Garrett is fortunate to have a diabetic for a father, but Iand#8217;m not sure. Most parents with a newly diagnosed child fear the unknown. I knew too much.
When the sun comes up, we are in a hospital room, and Garrett is finally relieved of the tube in his nose and the IV in his arm. He 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.
and#147;Itand#8217;s 279,and#8221; 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 wasnand#8217;t imminent, but he was dying, his body unable to fulfill its most essential function and#151; 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 would 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 millennia since diabetes was first recognized.
But the insulin saves him, so for the moment I do not despair over his burden but feel a surge of happiness. My son is no longer thirsty.
Copyright and#169; 2006 by James S. Hirsch. Reprinted by permission of Houghton Mifflin Company.
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