By ABIGAIL ZUGER, M.D.
It was two decades ago that a group of culinary mavericks took a giant step backward down the evolutionary trail with the “slow food” movement. Instead of fast food produced by the assembly lines of giant consortiums, they championed products of small-scale agriculture — time-consuming to prepare, beautiful to behold, very good for you.
Now (and, some might add, at last) doctors are following suit, rejecting the assembly line of modern medical care for older, gentler options. The substituted menu is not for all patients — at least not yet. For the very elderly, however, most agree the usual tough love of modern medicine in all its hospital-based, medication-obsessed, high-tech impersonality may hurt more than it helps.
In its place, doctors like Dennis McCullough, a family physician and geriatrician at Dartmouth Medical School, suggest “slow medicine” — as he puts it, “a family-centered, less expensive way.”
This medicine is specifically not intended to save lives or to restore youthful vigor, but to ease the inevitable irreversible decline of the very old.
Dr. McCullough directs his book to the children of elderly parents, and he pegs it to the story of his mother. She evolved from a vital, healthy 85-year-old retiree to a feeble 92-year-old dying in hospice care, not from any particular disease so much as the aggressive frailty common among the oldest of old people.
His bottom line is this: It is up to friends and relatives to rescue the elderly from standard medical care. And slow medicine, like slow food, involves a lot of hard work. Readers who sign on will acquire a staggering list of tasks to perform, some of which may be just as tiring and tear-producing as chopping onions.
First, while the aging parent is still vital and lively, children must not fool themselves that this happy situation will last forever. This is the time, Dr. McCullough suggests, to reinsert themselves back into the parent’s life, to show up at doctor visits and to raise unpleasant topics like advance directives and health proxies.
After few more years, it is time to address the “Should you still drive?” and “Can you still manage at home?” issues, and to help create routines that compensate for a slipping memory and slightly wobbly balance.
Medical crises will inevitably arise; the child must be vigilant for a hospital’s bad habits when caring for elderly patients. An “advocacy team” of friends and relatives should be mustered to help protect the hospitalized parent; a wider “circle of concern” should be tapped for moral support.
Still down the road is the complex world of rehabilitation, either home-based or institutional, and the even more complex spectrum of available nursing options for the slightly impaired, the seriously impaired and those near death.
All the while, medical care for the parent should favor the tried and true over the high tech. For instance, Dr. McCullough points out that instead of a yearly mammogram, a manual breast exam may suffice for the very old, and home tests for blood in the stool may replace the draining routine of a colonoscopy.
The parent’s doctors should be nudged to justify flashy but exhausting diagnostic tests, and to constantly re-evaluate medication regimens. The high-blood-pressure pills that are life-saving at 75 may cause problems at 95, and paid companionship or a roster of visitors may prove to be antidepressants at least as effective as any drug.
The pace of care should be slowed to a crawl. For doctors, that means starting medications at low doses and increasing them gradually. For children, that means learning not to panic and yell for an ambulance on every bad day. And for a good overall picture of a parent’s condition, a child is well advised to ignore the usual medical and nursing jargon and to focus instead on the sound of the parent’s own voice. “No one,” Dr. McCullough says, “can be a bigger expert on a parent’s voice than a former teenager trained in the same household.”
Some standard self-help muzziness creeps around the edges of this book, with reflections on the value of scrapbooks to preserve family memories and admonitions that “it is always the right time to say ‘thank you’ and ‘I love you.’ ” Dr. McCullough’s decision to call each stage of old age a “station” (as in “The Station of Crisis,” “The Station of Decline” and “The Station of Prelude to Dying”) may be a little too religious for some and far too reminiscent for others of the food stations at large catered events.
Instead, he might have steeled the book’s spine with a few hard-headed tips for those who would valiantly try to slow the twin Mack trucks of the modern doctor and the modern hospital. How should relatives go about applying the brakes to their fast doctors without alienating them or earning for themselves the label of troublemaker? Dr. McCullough, by his own report, works in something of a paradise when it comes to geriatric care, but in many medical venues the phrase “slow down” is an obscenity.
Still, he has written a valuable book, chilling and comforting in equal measure. A similar book directed at fast doctors, fast hospital administrators and fast insurers might be the next welcome stride backward down the path.
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Senin, 17 Maret 2008
Many Doctors, Many Tests, No Rhyme or Reason
By SANDEEP JAUHAR, M.D.
I recently took care of a 50-year-old man who had been admitted to the hospital short of breath. During his monthlong stay he was seen by a hematologist, an endocrinologist, a kidney specialist, a podiatrist, two cardiologists, a cardiac electrophysiologist, an infectious-diseases specialist, a pulmonologist, an ear-nose-throat specialist, a urologist, a gastroenterologist, a neurologist, a nutritionist, a general surgeon, a thoracic surgeon and a pain specialist.
He underwent 12 procedures, including cardiac catheterization, a pacemaker implant and a bone-marrow biopsy (to work-up chronic anemia).
Despite this wearying schedule, he maintained an upbeat manner, walking the corridors daily with assistance to chat with nurses and physician assistants. When he was discharged, follow-up visits were scheduled for him with seven specialists.
This man’s case, in which expert consultations sprouted with little rhyme, reason or coordination, reinforced a lesson I have learned many times since entering practice: In our health care system, where doctors are paid piecework for their services, if you have a slew of physicians and a willing patient, almost any sort of terrible excess can occur.
Though accurate data is lacking, the overuse of services in health care probably cost hundreds of billions of dollars last year, out of the more than $2 trillion that Americans spent on health.
Are we getting our money’s worth? Not according to the usual measures of public health. The United States ranks 45th in life expectancy, behind Bosnia and Jordan; near last, compared with other developed countries, in infant mortality; and in last place, according to the Commonwealth Fund, a health-care research group, among major industrialized countries in health-care quality, access and efficiency.
And in the United States, regions that spend the most on health care appear to have higher mortality rates than regions that spend the least, perhaps because of increased hospitalization rates that result in more life-threatening errors and infections. It has been estimated that if the entire country spent the same as the lowest spending regions, the Medicare program alone could save about $40 billion a year.
Overutilization is driven by many factors — “defensive” medicine by doctors trying to avoid lawsuits; patients’ demands; a pervading belief among doctors and patients that newer, more expensive technology is better.
The most important factor, however, may be the perverse financial incentives of our current system.
Doctors are usually reimbursed for whatever they bill. As reimbursement rates have declined in recent years, most doctors have adapted by increasing the quantity of services. If you cut the amount of air you take in per breath, the only way to maintain ventilation is to breathe faster.
Overconsultation and overtesting have now become facts of the medical profession. The culture in practice is to grab patients and generate volume. “Medicine has become like everything else,” a doctor told me recently. “Everything moves because of money.”
Consider medical imaging. According to a federal commission, from 1999 to 2004 the growth in the volume of imaging services per Medicare patient far outstripped the growth of all other physician services. In 2004, the cost of imaging services was close to $100 billion, or an average of roughly $350 per person in the United States.
Not long ago, I visited a friend — a cardiologist in his late 30s — at his office on Long Island to ask him about imaging in private practices.
“When I started in practice, I wanted to do the right thing,” he told me matter-of-factly. “A young woman would come in with palpitations. I’d tell her she was fine. But then I realized that she’d just go down the street to another physician and he’d order all the tests anyway: echocardiogram, stress test, Holter monitor — stuff she didn’t really need. Then she’d go around and tell her friends what a great doctor — a thorough doctor — the other cardiologist was.
“I tried to practice ethical medicine, but it didn’t help. It didn’t pay, both from a financial and a reputation standpoint.”
His nuclear imaging camera was in an adjoining “procedure” room. He broke down the monthly costs for me: camera lease, $4,500; treadmill lease, $400; office space, $1,000; technician fee, $1,800; nurse fee, $1,000; and miscellaneous expenses of $200.
“Now say I get on average $850 per nuclear stress test,” he said. “Then I have to do at least 10 stress tests a month just to cover the costs, no profit going into my pocket.”
“So,” I said, “there’s pressure on you to do more than 10 stress tests a month, whether your patients need it or not.”
He shrugged and said, “That is what I have to do to break even.”
Last year, Congress approved steep reductions in Medicare payments for certain imaging services. Deeper cuts will almost certainly be forthcoming. This is good; unnecessary imaging is almost certainly taking place, leading to false-positive results, unnecessary invasive procedures, more complications and so on.
But the problem in medicine today is much larger than imaging. Doctors are doing too much testing and too many procedures, often for the sake of business. And patients, unfortunately, are paying the price.
“The hospital is a great place to be when you are sick,” a hospital executive told me recently. “But I don’t want my mother in here five minutes longer than she needs to be.”
Dr. Sandeep Jauhar is a cardiologist on Long Island and the author of the new memoir “Intern: A Doctor’s Initiation.”
I recently took care of a 50-year-old man who had been admitted to the hospital short of breath. During his monthlong stay he was seen by a hematologist, an endocrinologist, a kidney specialist, a podiatrist, two cardiologists, a cardiac electrophysiologist, an infectious-diseases specialist, a pulmonologist, an ear-nose-throat specialist, a urologist, a gastroenterologist, a neurologist, a nutritionist, a general surgeon, a thoracic surgeon and a pain specialist.
He underwent 12 procedures, including cardiac catheterization, a pacemaker implant and a bone-marrow biopsy (to work-up chronic anemia).
Despite this wearying schedule, he maintained an upbeat manner, walking the corridors daily with assistance to chat with nurses and physician assistants. When he was discharged, follow-up visits were scheduled for him with seven specialists.
This man’s case, in which expert consultations sprouted with little rhyme, reason or coordination, reinforced a lesson I have learned many times since entering practice: In our health care system, where doctors are paid piecework for their services, if you have a slew of physicians and a willing patient, almost any sort of terrible excess can occur.
Though accurate data is lacking, the overuse of services in health care probably cost hundreds of billions of dollars last year, out of the more than $2 trillion that Americans spent on health.
Are we getting our money’s worth? Not according to the usual measures of public health. The United States ranks 45th in life expectancy, behind Bosnia and Jordan; near last, compared with other developed countries, in infant mortality; and in last place, according to the Commonwealth Fund, a health-care research group, among major industrialized countries in health-care quality, access and efficiency.
And in the United States, regions that spend the most on health care appear to have higher mortality rates than regions that spend the least, perhaps because of increased hospitalization rates that result in more life-threatening errors and infections. It has been estimated that if the entire country spent the same as the lowest spending regions, the Medicare program alone could save about $40 billion a year.
Overutilization is driven by many factors — “defensive” medicine by doctors trying to avoid lawsuits; patients’ demands; a pervading belief among doctors and patients that newer, more expensive technology is better.
The most important factor, however, may be the perverse financial incentives of our current system.
Doctors are usually reimbursed for whatever they bill. As reimbursement rates have declined in recent years, most doctors have adapted by increasing the quantity of services. If you cut the amount of air you take in per breath, the only way to maintain ventilation is to breathe faster.
Overconsultation and overtesting have now become facts of the medical profession. The culture in practice is to grab patients and generate volume. “Medicine has become like everything else,” a doctor told me recently. “Everything moves because of money.”
Consider medical imaging. According to a federal commission, from 1999 to 2004 the growth in the volume of imaging services per Medicare patient far outstripped the growth of all other physician services. In 2004, the cost of imaging services was close to $100 billion, or an average of roughly $350 per person in the United States.
Not long ago, I visited a friend — a cardiologist in his late 30s — at his office on Long Island to ask him about imaging in private practices.
“When I started in practice, I wanted to do the right thing,” he told me matter-of-factly. “A young woman would come in with palpitations. I’d tell her she was fine. But then I realized that she’d just go down the street to another physician and he’d order all the tests anyway: echocardiogram, stress test, Holter monitor — stuff she didn’t really need. Then she’d go around and tell her friends what a great doctor — a thorough doctor — the other cardiologist was.
“I tried to practice ethical medicine, but it didn’t help. It didn’t pay, both from a financial and a reputation standpoint.”
His nuclear imaging camera was in an adjoining “procedure” room. He broke down the monthly costs for me: camera lease, $4,500; treadmill lease, $400; office space, $1,000; technician fee, $1,800; nurse fee, $1,000; and miscellaneous expenses of $200.
“Now say I get on average $850 per nuclear stress test,” he said. “Then I have to do at least 10 stress tests a month just to cover the costs, no profit going into my pocket.”
“So,” I said, “there’s pressure on you to do more than 10 stress tests a month, whether your patients need it or not.”
He shrugged and said, “That is what I have to do to break even.”
Last year, Congress approved steep reductions in Medicare payments for certain imaging services. Deeper cuts will almost certainly be forthcoming. This is good; unnecessary imaging is almost certainly taking place, leading to false-positive results, unnecessary invasive procedures, more complications and so on.
But the problem in medicine today is much larger than imaging. Doctors are doing too much testing and too many procedures, often for the sake of business. And patients, unfortunately, are paying the price.
“The hospital is a great place to be when you are sick,” a hospital executive told me recently. “But I don’t want my mother in here five minutes longer than she needs to be.”
Dr. Sandeep Jauhar is a cardiologist on Long Island and the author of the new memoir “Intern: A Doctor’s Initiation.”
When Is a Heart Attack Not a Heart Attack?
By LISA SANDERS, M.D.
1. Symptoms
The patient’s symptoms and blood tests indicated heart attack (left) but could also have pointed to damaged skeletal muscle tissue (right).
Multimedia
Graphic
“I don’t think he had a heart attack,” the patient’s wife declared emphatically. “I don’t care what the doctor in the hospital said.” The patient nodded his agreement. “But we need to be sure,” she added in a distinctive Long Island accent. That’s why they had gone to see Dr. Bruce Decter in New Hyde Park, N.Y., a cardiologist just out of training — to get a second opinion from someone a little closer to the books. The patient, a lanky 42-year-old man with a chiseled jaw, retreating hairline and skinny ponytail, seemed tired and anxious and grateful to have his childhood sweetheart do all the talking.
He had chest pain off and on for most of his adult life. His internist didn’t think it was his heart, and a normal stress test done the previous year seemed to confirm that. Then the week before his visit to Decter, his chest began to hurt while making love. It spread to his left shoulder and arm. And it didn’t go away. He hardly slept at all that night because of the pain and a gnawing anxiety that this time it really was a heart attack.
First thing the next morning he went to his internist. An EKG was normal, but the patient was so worried that his doctor arranged for him to see a cardiologist that afternoon. By then the patient was pale, sweaty and shaking. “I think you’re having a heart attack,” the cardiologist told the patient and then sent him straight to the E.R. The EKG done in the hospital was normal, but a series of blood tests indicated that he was having a heart attack, and a big one. He was rushed to the cardiac catheterization lab to see if the clogged vessel could be reopened. To the doctors’ utter amazement, there was no blockage; his heart looked fine.
Still, the cardiologist was certain that the patient had some kind of heart problem. As he explained it, there was either a blockage that reopened on its own, or he had a spasm in one of the coronary arteries. In either case, the patient was lucky that his heart hadn’t been permanently damaged. The cardiologist started the patient on a beta blocker — a medication that has been shown to protect the heart. But the chest pain kept coming.
2. Investigation
At his office, a week after the trip to the E.R., Decter examined the patient, a fit middle-aged man. His blood pressure was perfect. His heart rate was regular and slow. In fact, his entire exam was completely normal. He got another EKG. Also normal. The patient’s blood tests from the E.R. seemed to indicate that he had had a heart attack, but none of the EKGs or the angiogram revealed any abnormality.
The problem for Decter was one that doctors face regularly: how to reconcile tests that contradict one another. Often patients, and even doctors, think that test results provide a definitive answer — like the solution in today’s paper to yesterday’s crossword. But every test carries a risk of being wrong, and all tests need to be interpreted. This is never clearer than when different tests seem to tell different stories. Could these apparently contradictory results be shaped into a single narrative that made sense?
The blood test in question measures an enzyme that is released when a muscle like the heart is injured. That enzyme, creatine phosphokinase, abbreviated as CPK, was normal when the patient first presented to the emergency room but rose to a level 20 times higher than normal over the next several hours. In a patient who has chest pain that comes on with exertion, an elevated CPK usually means that the patient is having a heart attack.
But damage to any muscle will cause CPK to increase, so there is an additional test that can determine whether the enzymes are leaked from a damaged heart or from damaged skeletal muscle. When Decter called the lab for results of this test, he found that the CPK hadn’t come from the heart; it had come from the muscles of the arms and legs. “You’re right,” Decter told the anxious patient. “You didn’t have a heart attack.” But at this point, the young cardiologist acknowledged, he wasn’t at all sure what the patient did have.
The patient considered himself pretty healthy, he told the doctor. He took no medicine, had never smoked and exercised daily. In fact, the only other time he’d ever been in the hospital was when he was 21 and had mononucleosis. His urine then was really dark — “the color of Coca-Cola” — and the doctors were worried.
When Decter heard that, something stirred in his memory. Cola-colored urine. Perhaps this was the key. Had he had this kind of dark urine since then? he asked. The patient told him that a couple of times a month his urine would turn brown and he’d feel achy all over. It happened whenever he was sick or tired or when he exercised too hard. He’d told lots of doctors about it, but none of them could figure out what was going on.
Decter knew he was on to something. Urine that dark is usually caused by muscle breakdown. When muscle cells are damaged, they leak CPK, but they also spill several other chemicals. One of them, the compound that gives skeletal muscle its distinctive deep red hue, can turn urine a dark brown. Were the brown urine and the elevated CPK caused by the same problem? Were they both signs of some longstanding disease process that was destroying this patient’s muscle?
Decter sent his patient to Dr. Alfred E. Slonim, a pediatric endocrinologist by training who spent his career investigating diseases of the muscle. The patient called Decter after seeing the specialist, almost speechless with excitement. Slonim spent more than an hour with him and his wife, getting the history of his strange illness. “Tell him about what happens on Yom Kippur,” his wife prompted near the end of the interview. Every year on the Jewish day of atonement, the patient would fast for a day, from sunset to sunset. And every year, he would spend the day after Yom Kippur in bed, crippled by an aching in his muscles and passing dark brown urine. Once he said that, Slonim had the diagnosis: the patient had a form of the genetic disease known as carnitine palmitoyltransferase deficiency or CPT.
3. Resolution
In this rare genetic disease, patients are missing the necessary biological equipment to burn fat for energy. Normally the body uses a type of sugar provided by the diet or stored in the liver to keep the body running. When that sugar is used up, the body switches to fat for fuel. Patients with CPT can’t do that. Instead, when they run out of sugar, their bodies are forced to turn to the second backup form of energy: muscle. When this patient’s body depleted the normal fuel — because of decreased intake (fasting or illness) or increased metabolic activity (exercise or fever) — it had to turn to the energy stored in muscle just to keep the biological motor running.
This diagnosis finally allowed the patient and Decter to make sense of the original story. The CPT gave the patient terrible, chronic heartburn; the delicate tissue of the esophagus, when injured, can cause a pain that feels to many patients very much like the classic presentation of a heart attack. Certainly this patient thought he was having one the night he had sex. He didn’t sleep and didn’t eat all the next day when he was in the E.R., and that is what triggered the attack on his muscles and elevated his CPK numbers. “It’s incredible that it took a wrong diagnosis to get to the right one,” the patient told me. There’s no cure for this disease, but frequent meals can help ward off many attacks.
As for Decter, he says he doesn’t believe that this disease is quite as rare as he was told in medical school. Over the past decade, he has seen four patients with unexplained elevations in their CPKs and no evidence of heart disease. Two have tested positive for CPT-like genetic disorders. He’s still trying to figure out the other two.
1. Symptoms
The patient’s symptoms and blood tests indicated heart attack (left) but could also have pointed to damaged skeletal muscle tissue (right).
Multimedia
Graphic
“I don’t think he had a heart attack,” the patient’s wife declared emphatically. “I don’t care what the doctor in the hospital said.” The patient nodded his agreement. “But we need to be sure,” she added in a distinctive Long Island accent. That’s why they had gone to see Dr. Bruce Decter in New Hyde Park, N.Y., a cardiologist just out of training — to get a second opinion from someone a little closer to the books. The patient, a lanky 42-year-old man with a chiseled jaw, retreating hairline and skinny ponytail, seemed tired and anxious and grateful to have his childhood sweetheart do all the talking.
He had chest pain off and on for most of his adult life. His internist didn’t think it was his heart, and a normal stress test done the previous year seemed to confirm that. Then the week before his visit to Decter, his chest began to hurt while making love. It spread to his left shoulder and arm. And it didn’t go away. He hardly slept at all that night because of the pain and a gnawing anxiety that this time it really was a heart attack.
First thing the next morning he went to his internist. An EKG was normal, but the patient was so worried that his doctor arranged for him to see a cardiologist that afternoon. By then the patient was pale, sweaty and shaking. “I think you’re having a heart attack,” the cardiologist told the patient and then sent him straight to the E.R. The EKG done in the hospital was normal, but a series of blood tests indicated that he was having a heart attack, and a big one. He was rushed to the cardiac catheterization lab to see if the clogged vessel could be reopened. To the doctors’ utter amazement, there was no blockage; his heart looked fine.
Still, the cardiologist was certain that the patient had some kind of heart problem. As he explained it, there was either a blockage that reopened on its own, or he had a spasm in one of the coronary arteries. In either case, the patient was lucky that his heart hadn’t been permanently damaged. The cardiologist started the patient on a beta blocker — a medication that has been shown to protect the heart. But the chest pain kept coming.
2. Investigation
At his office, a week after the trip to the E.R., Decter examined the patient, a fit middle-aged man. His blood pressure was perfect. His heart rate was regular and slow. In fact, his entire exam was completely normal. He got another EKG. Also normal. The patient’s blood tests from the E.R. seemed to indicate that he had had a heart attack, but none of the EKGs or the angiogram revealed any abnormality.
The problem for Decter was one that doctors face regularly: how to reconcile tests that contradict one another. Often patients, and even doctors, think that test results provide a definitive answer — like the solution in today’s paper to yesterday’s crossword. But every test carries a risk of being wrong, and all tests need to be interpreted. This is never clearer than when different tests seem to tell different stories. Could these apparently contradictory results be shaped into a single narrative that made sense?
The blood test in question measures an enzyme that is released when a muscle like the heart is injured. That enzyme, creatine phosphokinase, abbreviated as CPK, was normal when the patient first presented to the emergency room but rose to a level 20 times higher than normal over the next several hours. In a patient who has chest pain that comes on with exertion, an elevated CPK usually means that the patient is having a heart attack.
But damage to any muscle will cause CPK to increase, so there is an additional test that can determine whether the enzymes are leaked from a damaged heart or from damaged skeletal muscle. When Decter called the lab for results of this test, he found that the CPK hadn’t come from the heart; it had come from the muscles of the arms and legs. “You’re right,” Decter told the anxious patient. “You didn’t have a heart attack.” But at this point, the young cardiologist acknowledged, he wasn’t at all sure what the patient did have.
The patient considered himself pretty healthy, he told the doctor. He took no medicine, had never smoked and exercised daily. In fact, the only other time he’d ever been in the hospital was when he was 21 and had mononucleosis. His urine then was really dark — “the color of Coca-Cola” — and the doctors were worried.
When Decter heard that, something stirred in his memory. Cola-colored urine. Perhaps this was the key. Had he had this kind of dark urine since then? he asked. The patient told him that a couple of times a month his urine would turn brown and he’d feel achy all over. It happened whenever he was sick or tired or when he exercised too hard. He’d told lots of doctors about it, but none of them could figure out what was going on.
Decter knew he was on to something. Urine that dark is usually caused by muscle breakdown. When muscle cells are damaged, they leak CPK, but they also spill several other chemicals. One of them, the compound that gives skeletal muscle its distinctive deep red hue, can turn urine a dark brown. Were the brown urine and the elevated CPK caused by the same problem? Were they both signs of some longstanding disease process that was destroying this patient’s muscle?
Decter sent his patient to Dr. Alfred E. Slonim, a pediatric endocrinologist by training who spent his career investigating diseases of the muscle. The patient called Decter after seeing the specialist, almost speechless with excitement. Slonim spent more than an hour with him and his wife, getting the history of his strange illness. “Tell him about what happens on Yom Kippur,” his wife prompted near the end of the interview. Every year on the Jewish day of atonement, the patient would fast for a day, from sunset to sunset. And every year, he would spend the day after Yom Kippur in bed, crippled by an aching in his muscles and passing dark brown urine. Once he said that, Slonim had the diagnosis: the patient had a form of the genetic disease known as carnitine palmitoyltransferase deficiency or CPT.
3. Resolution
In this rare genetic disease, patients are missing the necessary biological equipment to burn fat for energy. Normally the body uses a type of sugar provided by the diet or stored in the liver to keep the body running. When that sugar is used up, the body switches to fat for fuel. Patients with CPT can’t do that. Instead, when they run out of sugar, their bodies are forced to turn to the second backup form of energy: muscle. When this patient’s body depleted the normal fuel — because of decreased intake (fasting or illness) or increased metabolic activity (exercise or fever) — it had to turn to the energy stored in muscle just to keep the biological motor running.
This diagnosis finally allowed the patient and Decter to make sense of the original story. The CPT gave the patient terrible, chronic heartburn; the delicate tissue of the esophagus, when injured, can cause a pain that feels to many patients very much like the classic presentation of a heart attack. Certainly this patient thought he was having one the night he had sex. He didn’t sleep and didn’t eat all the next day when he was in the E.R., and that is what triggered the attack on his muscles and elevated his CPK numbers. “It’s incredible that it took a wrong diagnosis to get to the right one,” the patient told me. There’s no cure for this disease, but frequent meals can help ward off many attacks.
As for Decter, he says he doesn’t believe that this disease is quite as rare as he was told in medical school. Over the past decade, he has seen four patients with unexplained elevations in their CPKs and no evidence of heart disease. Two have tested positive for CPT-like genetic disorders. He’s still trying to figure out the other two.
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