23 Jul Missed Diagnosis – This is My Story, It Could Save Your Life
My story begins late one night in December 2008. I’d just come home from a long and wonderful trip to Bhutan, Nepal and India and was in the midst of moving in with a man I’d met and fallen in love with two summers before. We’re both in good health, exercise regularly and keep our diet on the light side. But this night we’d been out to a fancy restaurant. We were in a high mood, planning a celebration for our 70 and 75th birthdays as one big party in February. A few hours after I’d gone to sleep, an intense cramping in my lower left side awakened me. My abdomen was bloated. My stomach felt hard as a rock. I couldn’t lie still so I stood up. I immediately bent over in pain. Feeling pretty weak I supported myself with the back of a bedroom chair. Sitting or lying down felt worse. That night, I walked around and around and around the living room wondering what was wrong and what to do. I’d suffered digestive discomfort for years but never anything like this. It was logical to believe I’d picked up a bug in India. As I walked, I took GasX. About ten minutes later, I felt better and was able to go back to sleep. I thought that was the end of it but it was just the beginning.
I’m a psychologist who hears many clients describe digestive discomfort, especially after a meal out in a restaurant. I’ve listened to many women describe similar nightly walkabouts in which all they could do was wait for gastrointestinal pain to subside. One woman told me her mother had been having attacks for years and tried every home remedy and medical prescription in the book with no sustainable relief. It’s common to hear people report getting so frightened by the pain that they believe they’re having a heart attack. They go to an ER, lay around on a gurney for hours and come home with a diagnosis of indigestion. Still, since the pain was extreme, I called my internist the next day and got an appointment a few days later. He sent me for scans of my liver, kidneys, gall bladder and esophagus, gave me an ECG in his office and prescribed Prevacid for indigestion. All the tests came back normal.
But nothing was normal. I continued to have severe digestive discomfort and painful spasms every few nights. I searched the Internet hoping to understand my symptoms better. I kept coming up with GERD (gastro esophageal reflux disease) and IBS (irritable bowel syndrome). Each search described many of my symptoms but there was little mention of the pressure from gas that I was experiencing or the pain. I saw a nutritionist who was convinced that my gall bladder was malfunctioning. Her dietary recommendations didn’t work but she heightened my awareness of the importance of diet. In particular, I learned that carbohydrates produce gas and overeating at any particular meal puts extra stress on the stomach. I started a low carb diet and ate small frequent meals. I also stopped eating anything after six pm. Even though my alcohol habit consisted of little more than a glass of wine with dinner, I stopped drinking any alcohol. A glass of wine seemed to set off a spasm. Same with my morning cup of coffee. Taking these measures slowed down how often I experienced these episodes of intense pain but did not affect the intensity once one got rolling. Modifying my eating habits certainly helped but didn’t solve the problem.
Next I saw a gastroenterologist who was convinced I had SIBO (small intestinal bacterial overgrowth). He prescribed Xyfaxan, an antibiotic that targets bacteria in the intestine in order to restore proper balance and cease pain caused by spasms of the gut. I did several series of this antibiotic over the next months. The third, pulling out all stops, was for three weeks. He also prescribed Levsin, an antispasmodic medication. The antibiotics seemed to lessen the frequency of occurrences and the Levsin was a godsend. My symptoms were increasing and the episodes becoming more frequent, more unpredictable. It’s hard to describe how disturbing it was to be clueless about when an episode might occur. If I had an afternoon of clients, I ate a light breakfast with no carbs and skipped lunch. It was the only way I could be sure I wouldn’t crash in the middle of a session with a client. With Levsin in my pocket, I felt more in control but when I wanted to be sure I wouldn’t get an attack I just didn’t eat.
Oddly, when I was fine, I was fine and that was most of the time. Difficult to predict, symptoms often came out of the blue and while very intense, passed within minutes. I learned that I could avert an episode by taking Levsin at the first sign of symptoms and even stop a rising spasm on its way to full bloom if I acted quickly. Because Levsin worked and because the antibiotics seemed to be working, I had confidence that the GI doctor knew what he was doing and felt confident he would solve the problem. I began to keep a journal of what I was eating and when I had symptoms. Eating carbs and eating too much at one meal continued to be major culprits. They led to gas, bloating, abdominal cramping, heartburn and scratchy throat. As months passed, I sometimes felt an intense pressure pushing on my diaphragm and rising to the center of my chest. I sometimes felt a hot spot behind my sternum, pain in one or both arms and soreness under my ears. I took Levsin everywhere with me. On a walk, to the movies, to bed.
Adding to my difficulties, I felt depressed, tired and annoyed. So many interactions in life revolve around food. “Let’s get together for lunch” became a challenge. Not being able to eat freely meant playing a game when we went out with friends. I began a blind man’s game of not seeing food on the table, on my plate or on a menu in order to enjoy myself. At least in California where I live, restaurants are used to people customizing their meals but I only had one diet I knew worked. When it didn’t fit the occasion, I cancelled. It’s an education to notice how central food is to so many ordinary things we do in a day. Being so restricted often secretly stole the fun out of a get together for me but I couldn’t risk a build-up of pressure.
On occasion, symptoms got started and subsided on their own. But mostly, the only thing that made a spasm bearable was Levsin. GasX always helped. Sometimes Gaviscon or Prevacid helped. I tried PPI acid suppressors (proto pump inhibitors) but with little reliable effect. On my low carb diet, I lost weight, 20 lbs from 138 to 118 in eight months. In a society where “one is never too thin”, I was looking good and getting lots of compliments but I did not feel good. It’s one thing to modify life to live around symptoms, another to think of living with an imposed restriction day in and day out for the rest of my life. As time wore on without a diagnosis, I began to think the painful episodes were here to stay.
My spasms felt like contractions in childbirth, horribly intense but subsiding in minutes. Resolved to their intrusion, at least I knew they would end. Like a woman giving birth, I went with the pain, breathed as rhythmically as I could and held the faith that I could get through it. I leaned against a couch, a fence or a wall depending on where I was when they happened. Since I felt like a pregnant woman with too much pressure on her stomach, I slept on a wedge to keep my head elevated to alleviate weight on my digestive tract. Keeping my upper body elevated while I slept helped me feel better but it didn’t prevent pressure from building up. Sometimes I woke up in the middle of a nightmare dreaming that I was being strangled or crushed or worse. To combat this invisible foe, I did everything I could, but to no avail.
Since I believed my symptoms were clues, I described them numerous times to numerous doctors, each with a different specialty, hoping one of them – internist, nutritionist, cardiologist, gastroenterologist and holistic md – would recognize what I could only sense. I kept asking questions, kept looking to them for answers. What’s causing all this? Where’s all the gas coming from? If it’s acid reflux, GERD and/or IBS, why doesn’t elimination of the usual culprits – gluten, dairy products, chocolate, wheat, red meat and alcohol – make a difference? If it’s SIBO (small intestinal bacterial overgrowth), why aren’t the antibiotics working? And, bottom-line, how does pressure from intestinal gas cause a cramp in my chest? Since my problems started the week after I came back from a trip to India, doctors and friends joined me in speculating that I’d brought back an obscure bug. That added to the mystery but it still didn’t explain how indigestion was related to spasms.
Did I take tests? Of course. Blood tests, electrocardiograms (ECG), scans and scopes of the upper and lower GI tract. They ruled out esophageal problems, gall bladder, liver and kidney problems, heart problems – or so I thought. Did I follow doctor’s instructions? Of course. Three rounds of intestinal antibiotics. Did I talk to people? Of course. Smartest friends in the room. Everyone had their own experience and/or someone close to them who had similar symptoms. They also had lots of advice. Apparently, there are millions of Americans suffering from chronic bouts of indigestion that they’re treating with billions of dollars of digestive aids. But no one pieced together the combination of symptoms I was describing into a diagnosis.
To add to my confusion about what was happening and, in hindsight, to the hidden danger of a missed diagnosis, I had a para-thyroidectomy in December 2008. I had been diagnosed with parathyroid dysfunction during an annual checkup with my internist before my trip to India. There was some speculation about whether it could be a cause of my digestive discomfort. Not likely but a possibility. Apparently faulty calcium regulation can contribute to digestive problems. The surgery required – of course – blood tests and another ECG. Fortunately (especially in hindsight), I flew through the surgery with flying colors. But it further confused the picture. After my calcium levels were restored, I enjoyed an upsurge of energy. When I was not actually experiencing an episode or its aftermath the next day, I felt better than I had in years.
Incidentally, in January 2009, I saw a cardiologist. It was a routine visit, like seeing a gynecologist. It was simply part of my overall pursuit of greater health appropriate to my age. My cholesterol levels were a bit high (LDL 120) and I was considering statins. I did, of course, describe my symptoms to him, including the fact that I was seeing a GI doctor. During the exam, he thought he noticed a murmur and recommended I get a stress-echo test to complete my work up. “Nothing urgent”, he assured me. Nothing that couldn’t wait until after a spring trip my partner and I were planning to Paris. In fact, none of my doctors expressed any caution about traveling for six weeks out of the country or any urgency regarding any other tests.
In August 2009 – after eight months of mind-numbing episodes of pain — I did find the answer. Persistent questioning – and, I believe, lady luck was on my side. We came home from Paris mid-June and I made an appointment to complete my cardiology workup with a stress echo test at the first opportunity. That would be August 7. By this time I was afraid my digestive difficulties were burdening my heart. I thought I might not be able to complete the stress echo well enough for accurate results. But by August, I was a pro at dealing with my attacks and felt confident I could get through it even if I felt one coming on. Exertion at this time was the least of my concerns.
Even though I knew that going up a steep sidewalk, swimming 4 short laps in a row or spending ten minutes on the elliptical trainer could arouse symptoms signaling the likelihood of an attack, I could work around it. I’d learned to pace my walking, slow down my exercising and not lift anything heavy. On the stress echo treadmill, it didn’t surprise me that I was fine for 4 ½ minutes, 134 heartbeats. At that point I began to feel the usual pressure in my stomach, a light-headedness, pain behind my ears and a desperate need to rest. I’d been told 138 heartbeats was the target so when the monitor flashed a red 141, I figured I’d more than accomplished the target. I gasped for breath and asked the nurse, “Is that it? Can I stop now?” And she answered, “Only if you want to.” She didn’t bat an eyelash at my obvious distress. I’ve since discovered that people like to challenge the treadmill when they take the test so I guess that’s what she was used to. Then I did what I usually did when I was faced with an imminent attack. I calmed myself down. I breathed, meditated and thought pleasant thoughts while the nurse scurried around getting her numbers.
I was completely unaware of what had just happened. Customary for me, by the time I got to the waiting room, I felt fine. In this case, I felt pleased that I’d recovered without taking a Levsin. As I waited for the cardiologist, I was in a good mood, sure that – one more time – the test showed nothing definitive. My blood test numbers looked better than ever. They had all dropped dramatically from the year before. Total Cholesterol — 202 (from 247), Triglycerides — 61 (from 95), HDL 79 (108), LDL 111 (from 120). Clear proof that diet can affect your cholesterol — in case you had any doubt!
This was Friday afternoon. I was reading these results when the cardiologist came in. I was fully expecting a smile on his face. Instead, the look on his face was dead serious. He was very careful with his words. His words. “You have angina. Your reaction to the stress echo test is one of the most extreme we’ve had here in quite awhile.” My brain. “Is this something new, different or related to my problem?” He wanted to schedule me for an angioplasty as soon as possible. He asked me “Were you frightened while you were taking the stress-echo?” Wryly I answered, “No, I’ve felt similar spasms hundreds of times since December.” I had no idea what he was talking about. He was the first person to mention the word ‘angina’. First to indicate that I should be very concerned, even alarmed. He scheduled an angioplasty for Monday. I had a vague idea of what an angioplasty was but I had no grasp on angina. I certainly wasn’t thinking what I should’ve been thinking. ‘Good grief, I’m lucky I’m not dead.’
The cardiologist knew, of course, what I didn’t know – that the angina I had experienced on the treadmill was a life threatening aspect of blockage of the arteries in my heart. He continued to talk while I continued to blur. He assured me that the beta-blockers and nitroglycerin he was prescribing would, as he put it, “make sure I got through the weekend without an incident”. After not worrying for months, I now had to fret the weekend? Blur. As it turned out (and as usual), I had attacks both nights. And I used the nitroglycerin both times and it worked very quickly. I guess the good and the bad of the nitroglycerin was that it worked. It was evidence that the condition of my heart was the root cause of my painful episodes.
Fear blocked the big picture, distracting me from the warning my body was giving me that something very serious was wrong. Pain swept me off, like Dorothy in the Wizard of Oz, into a foreign land of medical expertise desperately in search of an answer to my symptoms. For eight long months, I had been swept away by a tornado of puzzling pain into the medical specialty of gastroenterology. As much trust as I’d put in the wizards of medicine, as conscientiously as I’d sought answers from them to show me the way home to health, the man behind the curtain didn’t have the answers.
Now, after the fact, I’ve learned that the information my doctors needed for a differential diagnosis for a woman has been all but excluded from medical research until recently. According to Harvard Health Letter (Vol. 34, 9/09), medical research on heart disease has steadfastly overlooked women because maleness has been considered the top risk factor. There is precious little published, even for doctors, indicating that gastrointestinal distress is a possible much less definitive symptom of heart disease in women. Furthermore, according to the same Harvard Health Letter, even when diagnosed, a woman still must be “a little more aggressive in getting the care” she needs. I can attest that I passed from doctor to doctor in Los Angeles, seeing some of the best doctors in the country without arousing the slightest expression of urgency about what they were seeing and hearing.
Medically speaking, I had angina pectoris. The spasms radiating to my arms finally made sense. After the fact, everyone seemed to know that angina causes pain when the heart experiences competition for its oxygen from digestion. I can’t imagine what would’ve been required to alert anyone of my doctors to imminent danger while I was traveling the yellow brick road of doctor’s appointments. What more could I have done? I even had an attack during an appointment with the GI doctor. As it was, the diagnosis did not get made until after I nearly set off a heart attack during a routine stress echocardiogram. Who were these doctors seeing in their examination room?
Angina is dangerous. It typically sets in motion a quadruple by-pass. I was diagnosed on a Friday, went in for angioplasty on Monday. In an extraordinary procedure that is now so standard it takes your breath away, a surgeon weaved a little camera up through an artery in my groin to my heart and discovered a 90% blockage. Instantly, he inserted a stent. Saved my life. That’s the only way to say it. I was very very lucky. Any untoward event. Any slight fender bender. A heated argument. Sudden anxiety. Traumatic surprise event – to me, a member of my family or one of my friends. Any unexpected stress that would’ve demanded more than 10% flow to my heart and I’d be dead. It’s a humbling thought.
The first thing my friends say when they hear my story is “That’s great. You’re going to be fine now.” And then there’s a pause, a second take. The next thing they say is ‘Ohmigawd, 90% blockage, you could be dead. That’s weird. How could your doctors miss that?’
I know I tell a harrowing truth that’s hard to believe. No one, not one doctor, friend or family member ever mentioned the word ‘angina’ to me in eight months of suffering. Angina was not in anyone’s vocabulary. Angina was never mentioned until my cardiologist said the word to me after the stress echocardiogram, a test ordered because he’d thought he heard a slight murmur in my earlier exam. Maybe my heart was murmuring to him, telling us to check out my heart and discover the angina behind my digestive distress.
Further in the ‘believe it or not’ department and to my complete delight, I’ve experienced a complete erasure of digestive distress since my angioplasty. All of my digestive problems have cleared up. I can eat anything I want. Drink wine and indulge in desert. My choice for the first time in almost a year.
But more important. Missing the diagnosis was extremely dangerous. Angina is as close as you can come to having a heart attack without having one. Angina is a build-up of plague in an artery of the heart – called atherosclerosis – that interferes with blood flow. Angina attacks don’t kill heart muscle but angina is a ticking bomb, ready to set off a heart attack with just the right amount of pressure – from stress, exertion, excitement. I’ve run across an impressive anecdote about angina written in 1790. Before the tests of modern medicine, Dr. John Hunter showed himself to be an astute observer of his own angina pectoris when he wrote, “My life is in the hands of any rascal who chooses to annoy or tease me.” What he knew is that an imbalance between the metabolic demands of the heart and the adequacy of one’s coronary circulation to provide oxygen causes pain. I wish I had had his insight. I experienced surges of physical symptoms when I got angry, upset or frightened or ate too much but I had no inkling what it meant. Now I know, angina interferes with the flow of blood when we need it the most. Not during an ECG when the heart’s at rest. If my heart had needed more than 10% blood flow to deal with a sudden jolt of fear, heavy lifting or – as with the stress echo – running, I’d have had a heart attack.
Time to ask the big question. But before I do, I’d like to make a qualifying statement. Even though it’s clear to me, after the fact, that my doctor’s lack of insight endangered my life, I’d like to make it clear that I’m not blaming my doctors for missing my diagnosis. I’m grateful for their continued concern and, ultimately, thankful for to their expertise. As I said, they saved my life. But why didn’t the absence of a source for the relentless distress I was experiencing arouse a sense of urgency in my doctors?
Recent news headlines about being in charge of your own health care have taken on new meaning for me. Here are some thoughts to ponder, more frightening than they seem when one’s life is at stake.
1) It’s no secret that there’s a breakdown in the health system that doesn’t encourage communication between specialties. I don’t have statistics but, as in my case, it could be critical if lady luck isn’t on your side. My cardiologist believed I was in good hands for digestive distress and stayed his course until a stress echo that put me squarely in his ballpark. When my GI doctor tapped the bottom of his bag of tricks, he didn’t have a policy directive to pick up the phone and call my cardiologist even though he was seeing symptoms indicating a crossover. My internist, persistent and conscientious, is not a coordinator of services.
2) Medical training is not oriented to educate patients as partners in finding a diagnosis. Yet patients need help now. We need to know how to go beyond the walls of a particular specialty. Even my ability to ask in-depth relevant ‘doctor to doctor’ questions did not uncover my diagnosis. Not one of my doctors expressed the need for a stress echocardiogram. Though I’d seen the cardiologist initially in January, his response was routine. My internist, who I saw often, first in December and last in June, mentioned in passing “if you’d like to move your appointment (for the stress echo) up from August, you probably could.” I took that to mean the stress-echo was one more elimination test.
3) Where does the fabric of integrity underlying the medical field as a whole come into action? My GI doctor, with whom I was in continuous contact, agreed with my plan to finish up my cardiac workup after I got back from France. But he expressed no sense of urgency and no possible explanation of how my heart might be related to my digestive problems. Is that an appropriate end to his responsibility? Did he suspect a connection between digestion and the heart and not say so? Or if not, why not? If the patient is the lynch pin, the only one carrying information from specialty to specialty, they need education as much as elimination to find a diagnosis.
True, I didn’t fit the picture for Coronary Heart Disease (CHD). I had no markers, as they call the signs of CHD in medical circles. My numbers are good. I’m a happy 70 year old in a relationship, slim and in general good health. I stretch, walk, and workout daily. I’ve followed a fairly good diet for years. And I had my heart checked. I’d had two ECG’s. I’d had surgery, a high heart stressor. And I’d seen a cardiologist. I also felt fine when I wasn’t having an attack. No doctor objected to my taking a long trip out of the country even though we didn’t know what was causing my problem. No one explained I might need more than an ECG – or insist on a stress echocardiogram or a nuclear cardiogram, the tests that take pictures of your heart in action and when increased blood flow is needed – to determine whether my heart was okay. Even the idea that blood flow might be related to my spasms and/or digestive problems did not enter the equation until after the fact.
It seems more important than ever to see oneself as a detective hot on the trail of your own case. Or, a Dorothy who has pulled back the curtain and knows a doctor is just a person, not a god. It’s pretty much a medical fact these days that each doctor who sees you looks from their own particular specialty and that there’s little crossover from one specialty to another. As I heard one cardiologist put it “When you’re a hammer, everything you see is a nail”. Makes it not only good but necessary, I believe, to track your own clues. As if you were finding fingerprints, you can identify a pattern running through one appointment after another even when logic is missing and everyone is looking in the wrong direction. As hidden as it may be, a magical through line exists. On the road, a tin man without a heart, a scarecrow without a brain, a lion without courage all became more than when they started. Even though nothing made sense, I persisted, never lost my curiosity and, in the end, I found the answer. Like a murder mystery without the murder, my tale would make a captivating adaptation of the Wizard of Oz.
The moral of my story? Don’t hand over your ruby red shoes. Doctors are ordinary people. It has to make sense to you before it makes any sense at all. Put angina in your vocabulary alongside heart attack and stroke. No reason to wait and wonder if your heart might be the heart of the matter. Check it out. Don’t wait for your doctor to tell you it’s urgent. And don’t settle for a test that won’t give you the full picture of your heart at work. It’s when it has to go to work that your life depends on it.
I’ve lived my life citing a couple mantras. One from Bob Dylan — “Those not busy being born are busy dyin’.” Another from Yevgeny Yevtusheko — ‘Don’t die before you’re dead’. I’ve never had my life saved before. Now death is more than a metaphor. Perhaps old age is the age of miracles. Or at least the profound realization of life as miracle. Take it to heart. Literally.
By Jane Alexander Stewart, Ph.D.