Find Your Way: Illness, Doctors, and Healthcare. A Doctor's Guide to Taking Charge of Your Health and Navigating Modern Healthcare.

PREFACE

After thirty-five years of listening to patients’ experiences with illnesses and healthcare, and their relentless search for good doctors, practices and hospitals to restore their health, I realized the problem is not just about the resources or lack of available services, doctors or technology. Even those who are financially secure, with good health insurance, have difficulties maintaining their health and establishing mutually satisfying relationships in healthcare. You might think that in our society, where medical practices and doctors are available in every neighborhood, shopping center and online, we would not have a problem receiving sound medical advice and high-quality healthcare. Yet patients transfer their care from one practice to another, pay for concierge practices, opt for new models of value based care in search of the right doctor who understands their struggles and their pursuits and who can safely guide them through their health journey.

Medicine and healthcare stopped being paternalistic long ago, where we relied on the ultimate trust of a physician’s opinions, when patients unwearyingly accepted and followed their doctor’s advice, without contemplation. Now, equipped with unlimited sources of information available online, we have been transformed from quiet sufferers to people who question doctors’ opinions and look for faster, easier, cheaper, and more convenient and sustainable solutions to our health problems.

The time has passed when the patient-doctor relationship and trust determined the rules. Medicine has become technologically advanced, as well as a complicated and profitable business, with rules to protect the interests of many beyond patients and doctors. Many of us feel influenced by faceless bureaucracies, with their regulations that come above the purpose of patients seeking medical care and doctors who have dedicated their craft to provide it. The patient-doctor relationship has extended to the relationships within circles, which involves insurance companies, pharmacies, medical practice teams and administrators at different levels of the hierarchy within healthcare systems. Patients and doctors have to develop working relationships not only between each other—a challenge in itself—but also with these healthcare teams, to transform the doctors’ advice into the reality of diagnosis and treatment.

This transformation in modern healthcare has required new skills from patients and their doctors to overcome the challenges these changes present, far from the previously simple patient and doctor interactions. Overwhelmed with discovered genetic loads, self-destructive behaviors, illnesses and longevity pursuits, patients try to get through the current barriers to the sources of wisdom, skills and experience of compassionate physicians to receive scientifically advanced medical care that is not only safe but also convenient. They have learned to study their healthcare records, search for medical information and shop for doctors, hospitals and treatments.

Doctors have been transformed into providers, who, in addition to the lifelong learning of medicine, have to develop skills in electronic communication, telemedicine, and patient satisfaction, and speak a language of billing, coding, value-based quality metrics, and customer service.

There are no instructions on how to care about your health. Are my symptoms dangerous? Who should I tell about my symptoms and when? What online health information is reliable? Should I try dietary supplements before going to the doctor? Should I talk about all my problems when I’ve just met my new doctor?

There are also no instructions on how to navigate through changing healthcare. Medicine is a regulated and litigated business by the nature of the risks involved. Time has become a virtue that both patients and doctors must obey. During brief conversations, doctors need patients’ help to come up with the correct diagnosis and treatment. Without this help, cues to diagnoses can be missed. Are patients ready to provide a meaningful medical history, which will point doctors to the right diagnosis? To substitute this informational gap, doctors may order more and more tests to bring clarity or offer more medications. This cascade of overtreatment could be prevented by patients providing a detailed, organized history and making shared decisions based on doctors’ knowledge of science and patients’ awareness of their bodies, habits and experiences. We all, doctors and patients alike, make mistakes. I learned as a doctor and a patient that medical mistakes will happen less if we watch out for our own medical care. But how do we do that?

There is no training for patients on how to be in charge of their health, when and where to seek medical advice or how to become doctors’ partners. We learn this as we go through our or our loved one’s struggles with illnesses and experiences with doctors and healthcare.

In this book, I have collected suggestions and recommendations that I wish my patients knew while looking for answers to medical questions, communicating with their doctors and medical teams, and making decisions about their health. This book is a guide on how to take charge of your health and build partnerships with your clinicians, so that decisions being made fit into your goals, culture, and budget. Through examples of my patients, who have taught me wisdom about patient-doctor communication, I will show you how to recognize and overcome the obstacles for your medical care by identifying your health footprints—your roots and medical history—and developing self-awareness about your risks, powers, and self-destructive behaviors. Through learning about your normalcy pattern, you will be able to recognize symptoms and signs of illness and spot the red flags that should prompt you to seek help. I will show you how to communicate your medical history in a form that both you and your doctor can understand, share, and use to make your visits efficient and productive.

This book will help you to find your way through illness and healthcare; when, how and where to seek answers to your medical questions, find the right doctor and how to navigate through medical offices and hospitals. In other words, I will show you how to create your healthcare map and use medical services to your advantage. When you know your way, you can take charge of your healthcare. You might think, It’s easier for a doctor to take charge of my health. But after three decades of doctoring, it was only after I stepped into my patients’ shoes and felt the vulnerability of being sick, and the pressure of uncertainty or whether I would ever be cured, did I realize that we are the owners of our bodies and we are in charge of our health. We just have to find the way.

INTRODUCTION

Turn your wounds into wisdom.

OPRAH WINFREY

Jazz music was playing quietly. Men and women in blue gowns were moving with the music, while connecting my body to the blinking monitors, asking if I was comfortable. There was a certain mystery about this room. The blinking monitors, large screens and imaging equipment of the cardiac catheterization lab kept secrets of many hearts. Reaching someone’s heart by inserting a tiny tube into the blood vessel of an arm or leg and seeing the heart pushing the injected contrast material through the chambers, vessels, valves, then out through the aorta, the biggest human vessel, with predictable frequency is one of the most powerful pictures.

My visits to the hospital’s cardiac catheterization lab had always been about my patients and the verdict of the cardiologists. This time, it was different. The large surgical lamp was shining right into my chest. It was I who lay on the surgical table connected to the monitors. My life rolled before me like a fast-forwarding movie: my children smiling and stretching their tiny hands toward me, and then all grown up, friends who seemed to never grow old, men I’d loved, and who seemed to magically continue to love me back, and patients I’d fought for against their army of illnesses.

I had a good run, I told myself, thinking about my life. Quite an adventure—referring mostly to 16 June 1996, when I pulled out my Russian roots to cross 10,000 miles across two continents and arrive in the United States with two children, two bags, and a few hundred dollars.

Mine was a typical immigrant’s story of reaching for safety for my children, mixed with my own big dreams, although I wondered how I would manage it with only knowing a few words in English. Maybe not so typical was the terror I felt when my son was kidnapped, or when I held a cold revolver in my shaking hand, facing masked men who’d been sent to my home to collect debts from my filthy rich Novo-Russian ex-husband. The fear I’d felt in that memory passed now as the power of the feeling of freedom I remember returned, and which I experienced for the first time when I landed on American soil. No more guns or threats to my children. I would do anything for that.

I didn’t think about how I’d worked for $5 an hour in a shop selling antique furniture, and as a technician in a sperm bank, while studying to take the USMLE exam to get into the medical residency. I didn’t remember the two or three jobs I worked at for decades to support my growing children, or the hurtful words from one of my colleagues that put me into tears.

The chest pain was lingering somewhere deep in my chest. Let it be. I wasn’t scared. I felt happy and at home in the hospital. It wasn’t a matter of what country I was in; the hospital was my home, and the nurses and doctors were my people. For more than 30 years I had been one of them; I was a doctor.

That evening, my doctor’s compassion muscle had got overworked. As it frequently happens to people speaking a foreign language, when emotions overflow, words do not come out in response. Instead, emotions bundle in the chest in a little ball. That ball, for me, became alive and transformed into a bird, who spread its wings and painfully tried to find a place inside of my heart. My chest responded to its presence with shortened breaths, almost like it didn’t want to disturb the struggling bird. That panicking bird didn’t want to leave my chest till the next day, reminding me of its existence through the night. The consciousness of my clinician’s mind sent warning signs: chest pain on exertion and shortness of breath in the middle-aged woman. Wake up, doctor! I did not have an elephant sitting on my chest, as it’s supposed to feel during a heart attack, I had a little bird. It’s going to be okay.

The medical assistant at my new primary care doctor’s office, where I’d arrived early in the morning, was visibly irritated with me—a demanding patient—asking to have their blood pressure rechecked. What did you say my blood pressure is? 190 over 100? It cannot be right. I eat healthily, jog 10 miles a week and do a headstand during my yoga practice. I reassure patients all the time that lifestyle modifications and stress management do work and should be tried before prescribing medications. The medical assistant looked at my electrocardiogram and clearly wanted to leave the room as quickly as possible.

Can I take a peek? I asked. I saw concern in his eyes. The familiar concave ST segment—the elevation pattern on the electrocardiogram of a classic heart attack—were signs that blood supply to my heart might be blocked. It can’t be happening to me! I would rather believe that I had mysteriously developed vision and hearing impairments than trust that I might have heart disease.

We have to call 911, my doctor said, almost apologetically.

Wait a minute, I’m the one who usually says we have to call 911. No 911, please, I responded. I signed the Against medical advice papers, took a picture of my electrocardiogram and left.

Bright sun blinded me as I exited the office. I glimpsed back and met the concerned look of the receptionist. I am gonna be fine! I mouthed, hoping she could read my lips, as my habitual intention of making people around me feel better kicked in.

It seemed then that all my reasonable senses wanted to ignore my medical emergency and focus on the beauty around me instead: bright sun, warm wind, and the smell of blooming orange trees. Positive thinking and holding on to anything that connects us with normalcy is a known defense mechanism against stress. Life is good! My doctor’s judgment was watching me as a patient in an almost hypnotic state. What do we do when we’re stressed? We eat. Sushi, I said, as I saw the sign next door and walked into the restaurant.

Memory is a funny thing. The Last Supper fresco by Leonardo da Vinci, which I admired in the Santa Maria delle Grazie Dominican monastery in Milan, unexpectedly came to mind. It can’t be my last supper. If so, it’s not bad! It’s my favorite food! Will this tray of sushi betray me, like my efforts of almost daily exercise and a sinless diet? My weight and cholesterol were perfect, why would I have heart disease? Is it God’s plan for me? I pictured again the apostles and Jesus, who, despite pain and suffering, gathered for the last meal, captured by Leonardo da Vinci.

Fortunately, the doctor in me interrupted my patient’s philosophical reasoning and re-assessed the medical vignette: middle-aged female with acute onset of on-and-off chest pain and shortness of breath after a stressful event at work. Most likely anxiety. Then why is there highly elevated blood pressure and an abnormal electrocardiogram? This did not make a category of anxiety as a differential diagnosis. Needs cardiac evaluation, was the doctor’s assessment. I texted the picture of my EKG to my colleague cardiologist without saying that it belonged to me. When I’d finished my chai tea, he texted back: Send your patient to the ER, I’ll meet her there in 20 minutes.

I called an Uber and arrived at the emergency department. Twenty minutes later, after laboratory results had confirmed a high probability of my heart muscle being injured, I fell asleep staring at the ceiling of the cath lab, with the joyous thoughts of my adventurous life and feeling grateful to God for all the gifts I had received.

I have good news and bad news, said my cardiologist when I woke up. The good news was that my faithful, healthy lifestyle had not betrayed me; proving once more that science is right. My coronary arteries were clean as a whistle, and I hadn’t had a heart attack. The bad news was that my heart was broken.

Broken heart syndrome or Takotsubo cardiomyopathy, is a medical term for a sudden weakening of the left ventricle—the heart’s main pumping system—which can happen as a result of severe emotional (more common in women) or physical (more frequent in men) stress. I was happy with the verdict as it meant I didn’t have to have any procedures or surgeries. The funny word, Takotsubo, didn’t mean much to me at that moment. It comes from the Japanese takotsubo or octopus pot and was given to this condition by Japanese physician Hikaru Sato, from Hiroshima City Hospital, who first recognized reversible left ventricular apical wall motion abnormalities that were often associated with emotional or physical stress and frequently affected women over 50.¹

The history of broken heart syndrome goes back more than three decades. In 1986, a 44-year-old woman was admitted to Massachusetts General Hospital with severe chest pain after learning about her son’s suicide. Her coronary arteries were clear of blockages or narrowing.² The mother’s heart had literally broken from the wealth of emotions and grief, which had caused a weakening of the heart muscle.

The chest pain, shortness of breath, electrocardiogram and blood test changes that patients with Takotsubo cardiomyopathy experience are similar to a classic heart attack. The main difference is that plaques in the coronary vessels and dependent myocardial changes, typical of a myocardial infarction, are usually absent in patients with Takotsubo. Broken heart syndrome results from the enormous release of catecholamines (hormones), provoked by the activation of the autonomic nervous and neuroendocrine systems during stressful events. Activation of the hypothalamic–pituitary–adrenal axis and the release of corticotropin-releasing hormone (CRH) stimulates epinephrine and a norepinephrine release by the adrenal glands, as well as norepinephrine release from the sympathetic nerve endings. These catecholamines stimulate cardiovascular and respiratory responses of rising blood pressure, heartrate and breathing rate, in addition to muscle tension. Redirecting the blood flow arouses the brain and prepares the muscles and the heart for a fight or flight response. Catecholamines also stimulate blood cell activation, leading to temporary clotting of small vessels, which is another physiological response to not bleed during the fight.³

Although life-threatening complications in the acute phase can cause death in one to eight people out of 100 cases,⁴ the changes in the hearts of Takotsubo cardiomyopathy patients are reversible, and broken hearts can heal. The real problem with this mysterious illness is that there is no well-proven cure or reliable treatment for it. Multiple causes have been considered as a potential explanation, with inflammation recognized to be a fundamental part of the pathophysiology, but the cause–effect relationship remains unknown.⁵ As a primary care doctor, I haven’t had patients with this diagnosis, and I knew that research on the treatments was quite elusive.

I left the hospital with a prescription for a beta-blocker—medication to improve my heart’s pumping function, control blood pressure and oppose the actions of catecholamines—and a recommendation to control my stress, the major trigger. A few months later, I started feeling more drained and tired, with occasional dizzy spells and nightmares, which were medication side effects I often warned my patients about, always adding that it’s worth it because the beta-blockers prolong the life of patients with heart disease. To improve my heart function, I had to exercise, but the beta-blocker made my fatigue too big an obstacle for my habitual physical activity.

Here I was, after 35 years of practice and thousands of patients healed, feeling lost, so how did my patients feel in this situation? It was a skin-crawling experience.

I am a firm believer that there is a purpose in every challenge God sends us. We just have to discover it. Being in the patient’s shoes is an experience that we, as doctors, should endure sometimes. I have advised probably thousands of patients about controlling their stress. So, what should I actually be doing? I wondered. Well-known stress-relief strategies are regular exercise, mindfulness, and healthy eating habits. They did not help me. I felt betrayed by my own body, and I lost faith in what I’d been preaching to my patients every day. The stress was exponentially growing, in fact.

When the patient’s voice is heard and considered, a better solution emerges, I was teaching my residents, encouraging them to listen to patients’ stories and their own attitude toward malady. What was my voice telling me now? Scientific reviews about Takotsubo cardiomyopathy advise that treatments should be decided on an individual basis, with careful consideration of the risks and benefits involved.⁶ If stress reduction was the advice, I had to figure out what triggered my stressful reactions and what had worked for me in the past. What else was out there to conquer that stress? Are there any other remedies that have the same benefits as beta-blockers on the heart without the side effects? I started my own search for answers, as many of my patients do.

Don’t be upset with me, but I found this information and decided … I often heard my patients say. People feel guilty and apologize for questioning doctors’ opinions and looking for alternative treatment options. But no apologies are necessary! That’s what partners do—provide constructive feedback and collaborate in seeking knowledge to get the best outcome. So, how can you be effective in your communication with your clinician? Let’s look into this.

PART ONE

LEARN ABOUT

YOURSELF

Knowing yourself is the beginning of all wisdom.

ARISTOTLE

CHAPTER 1

DO YOUR PART

Igrew up in a place that is not for wimps! Siberia, an area of Russia that extends from the Ural Mountains in the west to the Pacific Ocean in the east, north to Kazakhstan and the borders of China. When I talk about Siberia, people imagine bears walking in the snow, and taiga forests interrupted by headwaters of powerful rivers, which is far from reality. Because of notorious wars and threats to Russia, and the need to preserve and protect the country’s industry, academic and scientific resources, Siberia has transformed from the land with the name Tatar—meaning sleeping land—and place of exile for criminals and political and war prisoners, to the center of science in chemistry, physics, information technologies, and medicine.

Factories and academic institutions were evacuated from Central Russia at the time of World War II and were rebuilt and populated with the brilliant minds of former political and war prisoners from the camps spread throughout Siberian land. European culture and education were tightly mixed with the Asian roots of the local communities. The city of Tomsk, where I graduated from medical school, is one of the oldest towns in Siberia. It harbors six state universities, over 120,000 students, and five scientific medical centers. Not what you’d expect from a Siberian town?

Tomsk is a city of half a million people, but it wasn’t on the world maps till the late ’80s, being one of the closed to foreigners cities. One had to pass checkpoints to show entry documents. There was a true secret town too, known as Tomsk-7, later renamed Seversk, nine miles northwest of Tomsk, and it became home to the Sibirskaya Nuclear Power Plant, one of the Soviet Union’s first industrial-scale nuclear power stations. I don’t think it’s a coincidence that the National Research Medical Center, with centers for medical genetics, oncology, cardiology, obstetrics, gynecology and perinatology, pharmacology, and regenerative medicine research were built next to the nuclear plant. It merged science with technology infrastructure, which all started from the medical patriarch, Siberian State Medical University, my alma mater. However, the real spirit of Siberia is reflected by the toughness, independence, and commonsense of the rural people, molded by the harsh environment they live in.

My mother was a surgeon in the faculty of the Siberian State Medical University. When I was a kid, almost every summer I spent time on a small ship with my mother and other medical university faculty colleagues traveling more than 2,000 miles of the River Ob to rural villages, where people didn’t have access to healthcare during the heavy Siberian winters. The ship was a mini hospital with fully equipped operating rooms and tiny exam rooms, where faculty, residents, medical students, and nursing staff examined and treated patients, performed surgeries and procedures. Most of the healthcare in rural towns and villages was provided by feldshers, medical professionals with one year of medical education, with few physicians. The six feet of snow in the forests during winter, plus frozen rivers without bridges, were significant barriers for farmers and their families who lived there. Helicopters were available for transport of trauma victims, surgical, and complicated labor and deliveries.

Together with other children of physicians and medical staff, we cleaned and stocked patients’ rooms, filled up the huge samovar for tea, and helped with signing up patients. It was our responsibility to entertain the patients who were waiting to be seen or operated-on. We read poems by heart, sang and danced, doing whatever it took to make people smile. Grateful patients used to bring delicious homecooked food, pickled vegetables, mushrooms, honey, and wild berries.

One evening, when my mother returned after ten hours in the operating room, exhausted but happy, I asked a question that bothered me. How do all these people live separated by hundreds of miles of snow the whole year without seeing doctors?

My mother looked at me with a heartening smile. They take charge of their health—they eat right, don’t eat a lot, mostly natural, healthy food, wild berries, mushrooms and a lot of herbs. They know simple, natural remedies for colds, cuts, and bruises. They do a lot of physical work. If something happens, and they need urgent, complicated procedures or operations, feldshers ship them by helicopter to the nearest hospital. We will do the rest in the summer.

In my current understanding of medicine, this translates to principles of self-care, healthy nutrition combined with an active lifestyle, and accessible triage for sick patients. Doctors trust patients’ commonsense and their ability to recognize dangerous medical conditions and seek help when necessary.

Do we go to the doctor as soon as we feel a sore throat, backache, stuffy nose, stomachache, diarrhea or are just feeling down and tired? The first steps of medical care we make ourselves. Sometimes we wait and see, hoping nature will take its course or we ask advice from family and friends. We might consult Dr. Google, which has become an instant medical advisor for many. We make our own medical decisions and seek help online, from doctors’ offices, urgent care or the emergency room. Clinicians can only solve our medical problems if we reach out to them, tell our story and ask for help.

If you think doctors know the answers to every medical dilemma patients come in with, it’s absolutely not the case. Doctors are professionals, though, who know how human bodies work; they are familiar with the diseases that are out there and are skilled in using diagnostic algorithms and treating illnesses. Pulling out a single piece of knowledge—the sign or symptom—is only useful when doctors learn your story, examine your body for signs of suspected illness, and clarify raised uncertainties by using different tests. Doctors need YOU to guide them in the decisions they make.

I am your partner in crime, as long as we don’t commit too much crime! I often tell my patients. Why do you think we would commit a crime? asked Robert Hanger, a delightful farmer from Walterboro, a small town in South Carolina, who agreed with my every suggestion until we started talking about insulin to treat his advanced diabetes. Despite his high blood glucose numbers, Robert refused to take insulin, which would have been the best choice for his diabetes based on the known evidence-based guidelines at that time, before we had new, more powerful diabetes medications. That is not the best choice for me, said Robert, acknowledging ownership of his health journey.

Physicians may agree with a patient’s choice without asking why, and let the patient miss the opportunity to get the best treatment. When there is an established trust between a patient and a doctor, patients are more likely to disclose their reasons. Tell me what to do and I’ll do it, but I can’t see myself being on insulin. My father was only 60 when he died, ten years after he started taking insulin. Robert shook his head, clearly not ready to follow my evidence-based guidelines.

Insulin is not the best choice for me, he said, fully accepting his leading role. We postponed insulin treatment and he agreed to try other medications and lifestyle changes. We