By the time Catherine came to me for help, in the spring of 2012, the health care system had pretty much destroyed her health.
“I’ve been diagnosed with this… condition,” she began. “It’s called Churg-Strauss. They want to do surgery in a few weeks to confirm that I have it.”
Normally, this 53-year-old management professional lights up a room with her grace and vitality. Today was different: Three different doctors had just told her that she likely had a rare and fatal autoimmune condition.
Churg-Strauss Syndrome typically develops in three stages, starting with severe asthma and allergies. Next, the immune system fails, manifesting as fatigue, coughs, abdominal pain, gastrointestinal bleeding. In the third phase, the arteries and veins become so inflamed that blood can’t get to vital organs, causing all sorts of nasty symptoms: nausea, vomiting, chest pain, shortness of breath, numbness in the toes and fingers so bad that you can’t walk. All your major organs, muscles, and joints are attacked. Researchers aren’t sure what causes Churg-Strauss and there is no cure, but treatment—corticosteroids to start and, if it progresses, chemotherapy—can help keep the final stage at bay.
Sitting across from me that day, Catherine seemed confused and exhausted, uncertain of what to do, and fighting back tears every time she said the words “Churg-Strauss.” The process of trying to get better had only made her feel worse.
It was clear that she required more than just medical advice; she needed to regain the courage to take charge of her own medical care. Her history would provide the important clues we needed to get her back on track. “Tell me everything,” I said. “Start from the beginning.”
“It’s the most peculiar thing,” she said. “At about the age of 30, when my son was nine months old, I got a really bad cold that turned into bronchitis.” At the time, she was breastfeeding, and was advised against taking antibiotics. Six months later, she was still sick. Her doctors diagnosed her with late-onset asthma.
Over the years, her symptoms progressed and she struggled with tightening in her chest and a deep, painful cough that got worse in cold air. One evening, she fractured four ribs from coughing. Another time, she awoke in the middle of the night short of breath and grabbed for the inhaler on her bedside table. It didn’t open her airways. As her gasping intensified, she roused her husband, barely able to get out the words: Take me to the emergency room.
“It was a 20-minute drive and I started to get desperate,” she recalled. “It felt like I was drowning.” At the hospital, Catherine was put on an IV of adrenaline and cortisone to stabilize her breathing. She slowly recovered. “There may have been some trigger that day. Who knows? I can never tell what the trigger is.”
In her 23-year quest to feel better, Catherine had endured a battery of tests prescribed by countless well-meaning doctors (actually, I did count: 10 specialists, not including the physicians who treated her during hospital stays). She underwent numerous CT scans of her lungs. She was pinpricked for allergies; and tested some more for fungal infections, cystic fibrosis, and even the inherited condition alpha-1 antitrypsin deficiency, which can cause severe lung damage. She spent about $10,000 a year in out-of-pocket health care costs and thousands more pulling up carpets to minimize allergens.
All her doctors could tell for sure was that she had a slight allergic reaction to dust. That, and her asthma was getting worse. But there was an additional issue that went undiagnosed: treatment fatigue.
Her physicians meant well, but no one was coordinating her care. As a result, Catherine was pursuing a try-it-and-see-what-happens approach with each new doctor. As a result, she had taken an array of steroids, bronchodilators, and antibiotics over the years—adding more drugs to mitigate the side effects of the ones she was already on.
Catherine had spent two decades on anywhere from 10 milligrams to 60 milligrams a day on prednisone, a corticosteroid that helped her breathe—but at such high doses it can cause terrible side effects: bloating, bone deterioration, hyperactivity, insomnia, and thinning of the skin. If she so much as bumped into a chair, she’d develop purple bruises and gaping cuts that couldn’t be stitched because her skin was too fragile. She always wore soccer-style shin guards under her pants.
One morning in late 2011, to her horror, as she was flushing her sinuses with a Neti pot, a blob of tissue tumbled out. An ear, nose, and throat doctor shined a light up her nostrils, discovered her septum had perforated, and proclaimed that it could be Wegener’s, a potentially fatal vascular disease that attacks the lung and kidneys.
She next went to a rheumatologist who, thankfully, ruled out Wegener’s. But he was concerned about her recent history of urinary-tract infections, pneumonia, and reflux disease—and especially her CT scans, which showed that her lungs were functioning at about 50%. He asked Catherine if she had ever heard of Churg-Strauss Syndrome. Next stop: a pulmonologist. He was fascinated by Catherine’s symptoms and also suspected Churg-Strauss.
To test this hunch, Catherine was referred to another ENT. He advised that she undergo sinus-scrape surgery to look for signs of eosinophilia—an abundance of a type of white blood cell that multiplies in force when the body is under attack—which, he said, would point to a diagnosis of Churg-Strauss. The doctor proposed going up Catherine’s nose with an endoscope and stainless steel tools to scrape away bone and blockages, collecting enough tissue for analysis. Catherine would have to endure two black eyes, severe pain, and several weeks of recovery.
Her story horrified me, for a number of reasons.
“Stop,” I said. “Don’t do anything yet. I’m going to help you.”
While Catherine’s diagnosis was rare, her feelings of helplessness and defeat were not. I see this all the time: Before we get sick, we believe there is a health care “system” out there that will help us navigate whatever ails us. But when illness strikes, the journey to wellness is terribly confusing: a different language, rapidly changing science, and no one to co-pilot. We quickly discover there is no map. It’s no wonder that we often place our fate in the hands of doctors, no questions asked.
When you or someone you care for is sick and you don’t know what to do, it’s easy to become paralyzed, like Catherine. In that moment of anxiety and vulnerability there are critical choices to make. Yet all too often, we don’t know how to collect the right information, frame our options, and ensure that we’re making the best decisions. We don’t even know that we are in serious danger, like Catherine was, of becoming a patient-safety statistic.
In 1999, a groundbreaking Institute of Medicine (IOM) report, titled “To Err is Human,” revealed the dirty secret that our system can be extremely harmful to your health. According to the IOM, at least 44,000 and up to 98,000 people in the U.S. were dying each year as a result of medical error—things like inaccurate diagnoses, the wrong drugs or treatments, equipment failures.
This startling report sent shockwaves through the medical community. In 2005, the Patient Safety and Quality Improvement Act was signed into law, allowing for the creation of Patient Safety Organizations that collected and analyzed medical-error data. Numerous hospitals incorporated checklists to avoid missteps in patient care, and spent millions of dollars on computerized drug-dispensing systems. Sleep-deprived residents’ work shifts were limited to 16 consecutive hours.
And yet… we are still no safer. In fact, we may be in greater danger than ever.
According to a 2013 study in the Journal of Patient Safety, preventable medical errors actually contribute to the deaths of more than 400,000 Americans a year. That’s the equivalent of two fully loaded jumbo jets crashing, with no survivors, every single day—and it makes medical error the third-leading cause of death, after heart disease and cancer. The reason you don’t hear about it in the news is that there’s no fire, no sirens, no crash site. Instead, it’s Mrs. Morrison in the assisted-living facility succumbing to pneumonia—but they don’t tell you that she didn’t get the right antibiotic. It’s Mr. Jones dying from complications of surgery for his esophageal cancer. But what you don’t know is that his small community hospital didn’t have the proper expertise to monitor him.
“Despite all the focus on patient safety, it seems we have not made much progress at all,” said Dr. Ashish Jha, a professor of Health Policy and Management at Harvard’s School of Public Health, and one of several experts who testified last summer at a congressional hearing titled, “More than 1,000 Preventable Deaths A Day is Too Many: The Need To Improve Patient Safety.”
Have no doubt, you are at great risk of danger whenever you blindly place yourself in the hands of our fragmented system. We must proactively partner with doctors in our own care, because the consequences of simply accepting whatever we are given can mean the difference between life and death.
After meeting with Catherine, my team and I collected every lab test, X-ray, medical record, and scribbled doctors’ note we could muster from the last 23 years of her life—the length of time she had been struggling with her illness.
Catherine’s dossier was sent to Dr. Michael Wechsler, a leading authority on Churg-Strauss Syndrome and, at the time, a pulmonologist at Brigham and Women’s Hospital at Harvard. A week later Catherine got a phone call that changed her life.
Dr. Wechsler began by asking her questions about her health status: Do you have any neuropathy, any tingling or numbness? Any history of kidney issues? She mentioned her urinary-tract infections, the only symptom matching his concerns.
“Based on your records and what you’re telling me: I wouldn’t do the sinus surgery,” he said. “Churg-Strauss is a difficult disease to diagnose definitively. Doing a biopsy just to get a diagnosis, at this point, is not going to be helpful. Also, all these medications you are on will obfuscate any results.”
Dr. Wechsler believed that Catherine had a nasty case of worsening asthma with something called remodeling of the lungs. Her respiratory organs had been in a hypersensitive state for so long that they were permanently damaged.
She was also on too many medications. Her hamster wheel of a drug regimen had led to a tolerance of some prescriptions (which didn’t work for her anymore) and allergic reactions to others. The UTIs were probably exacerbated by the high levels of antibiotics she had taken; likewise, the bronchodilators contributed to her reflux disease.
But here’s the scariest part: If Catherine had undergone sinus surgery, her physicians would have found what they were looking for, because her blood tests over the years had already shown increasing levels of eosinophils. Catherine’s doctors surely would have diagnosed her with Churg-Strauss Syndrome, and begun treatment for a disease she didn’t have.
Her story is a stark reminder of why it’s crucial to first consult with an expert—a specialist with enough deep expertise that he or she has probably seen almost every iteration of your illness—before starting powerful treatments or invasive exploratory procedures.
A year later, Catherine was flourishing on 2.5 to 5 milligrams per day of prednisone, plus the use of her inhaler. Her reflux was gone and she was under the care of excellent allergists. After 23 years, Catherine finally regained peace of mind and was in control of her own health.
Helping people get the best possible medical outcomes is my life’s passion, but I am not a physician. I have been collaborating with doctors, patients, and policymakers for decades, advising people from all walks of life when they need medical guidance.
My official title is CEO of Private Health Management, but I’m really more of a health care quarterback, guiding clients through a wide range of ailments, from bunions and back pain to serious heart conditions and deadly cancers. My team and I have helped thousands of people to achieve better care—and avoid medical error—by digging deep into their cases to ensure they’re getting accurate diagnoses, seeing the best doctors, and receiving the most effective treatments for their specific illnesses.
Everything I’ve learned from more than 30 years of experience helping others, I’m sharing here for the first time so that you can do it too, for yourself and for your loved ones.
Some people mistakenly believe that being rich is a safeguard against poor care. Having worked with some pretty wealthy folks, I can tell you it just isn’t so. The most well-connected and -resourced patients often get terrible care. The reasons are many: They rush to treatment without asking enough questions or getting expert opinions; they go to their small community hospital for complicated procedures; or they commit their well-being to a trendy, brand-name doctor, even when their gut is telling them that this person has little investment in their care.
You do not need wealth to get excellent medical care. What you really need is competence and courage.
Achieving a lifetime of better health begins with the preparatory actions (forging a relationship with a strong primary-care physician, writing down your family’s health history, and collecting your medical records) that I describe in my book. I also show you how to prevent over-treatment, find the right specialists for any problem, and avoid the four mistakes most people make in a medical emergency. Next, I turn to serious illnesses. Whether you’re dealing with cancer, an autoimmune disorder, or some other potentially fatal diagnosis, you will learn how to move forward using the same four-step process of Intensive Case Management (1. Immersion, 2. Diagnosis, 3. Treatment, and 4. Coordination) that I’ve used to help thousands of people get better care and prolong their lives.
I know these lessons work, because I’ve been putting them in action almost my entire life. And my goal is nothing less than a health care revolution: I envision a world where each and every individual, no matter their age or income, has the courage and competence to make the best possible medical decisions whenever they or someone they love gets sick.
*Names have been changed.
Excerpted from The Patient’s Playbook: How to Save Your Life and the Lives of Those You Love, on sale from Knopf on September 1.