Late into the first Wednesday night of 2017, yet another emergency room doctor said the unemotional words my wife and I had learned to fear, “You’re OK, we can send you home now.”
My wife insisted that we see a cardiologist, but the doctor grimaced before telling her he was busy dealing with “things that were actually important, like heart attacks and strokes.”
Just over 24 hours later, two medical professionals at the Medical Center for Eating Disorders in Houston, were racing the clock to save my life.
But nothing had changed in those 24 hours. And I didn’t have an eating disorder.
Dr. Edward Tyson, MD, whom I’d only met moments before, quickly tore off the pink printout from the ECG, and ran out of the room with a desperately worried look on his face, already dialing his phone. Still lying on the exam table, I had trouble making sense of everything that was happening, and soon it all blurred into a hum of white noise around me. I remember pleading, “Just keep me safe. Do whatever you have to do to keep me safe.”
I was terrified that these professionals, specialists in the medical complications of eating disorders, had nothing to offer me. Still, something about them calmed me. They seemed to understand what was going on much better than most of the doctors I’d seen over the past three years, during which my unexplained and severe mouth ulcers had continually worsened. Now, I wasn’t able to eat or drink without excruciating pain, and my body had become dangerously malnourished.
Jennifer Nagel, PA-C tried to calm my wife and I, while quickly explaining I needed to fly to Denver, Colorado immediately to be treated on a specialty floor at a medical hospital — the only one of its kind in the world. As soon as I heard “Denver,” I knew exactly what she meant.
“ACUTE? You mean ACUTE?” The full significance of the danger I was in wrapped itself around me, like a blanket that very suddenly becomes too warm. “Are we really at that point?”
“We think you need to be admitted as soon as possible. You are at an incredibly high risk for a heart rhythm called torsade de pointes, and sudden death.”
Located on a dedicated medical unit at Denver Health hospital, patients at the ACUTE Center for Eating Disorders benefit from the extensive support of a major medical hospital, while the world’s leading experts provide life-saving medical stabilization. I have been familiar with ACUTE for many years, because more than 10 years ago I lived through severe anorexia and bulimia myself. I now live a life where food, weight, exercise and my body are not things I worry about.
Several years ago, I decided to stand by the professionals that helped me recover from my own eating disorder, and share my story. I now have the honor of sharing the hope of full recovery with students, health professionals, community members and patients and families at eating disorder treatment centers.
I certainly never thought that specialists in the medical complications of eating disorders, or the only medical eating disorders hospital unit in the world, would now come stand beside me, and save my life.
I called ACUTE immediately, and spent most of January in a hospital room in Denver being cared for by their incredible team, before I returned home to complete my recovery. I am proud to say that due to the skill and quick decisions of the doctors at both Houston’s Medical Center for Eating Disorders and ACUTE, on May 6th, I gave my first speech since being hospitalized — stronger than ever.
But what did the numerous emergency department doctors that saw me throughout December miss? More importantly, why?
They missed how unreliable the appearance of a patient can be. Physicians rely on the overall alertness of their patients in addition to objective tests to construct a picture of “how ill” that patient is. Unfortunately, patients who are severely malnourished, or who struggle with any of the eating disorders, can seem deceptively healthy when they are in grave danger.
They missed how quickly malnutrition can devolve from “fine” to life-threatening. Laboratory values that are within normal limits, or that can be quickly corrected to normal, are not typically cause for concern in an emergency department. However, normal lab values in a severely undernourished body may be quite ominous.
They missed how serious things already were. My ECG in the emergency department should have been very concerning. My potassium level, which had continued to drop despite increasingly aggressive replacement, should have been concerning (low potassium is a strong risk factor for dangerous cardiac arrhythmias). Add to that my history of surgery due to a congenital arrhythmia, and we had the perfect storm for sudden death.
They missed how dangerous it would be for me to start eating again. Most eating disorder professionals now recognize the catastrophic refeeding syndrome as a concern in severely malnourished patients, but few are equipped to determine at what point of malnourishment expert inpatient medical treatment should begin along with refeeding.
They missed their own cognitive bias. They didn’t know what they didn’t know. Standard emergency department treatments (such as rapid infusion of IV fluids) are, more often than not, dangerous in patients with severe malnutrition.
Going to an emergency room calms many of our fears for our (or our loved one’s) medical situation. I’m not sure it should. A non-specialist medical doctor cannot be expected to handle the vast complications of a severely malnourished patient, or anticipate how quickly that patient can deteriorate. And unfortunately, the dire complications of severe malnutrition often do not correlate with how sick a patient looks to an untrained eye, in person or on paper.
A patient with cancer, epilepsy or cystic fibrosis is automatically sent to a specialist for evaluation and treatment. Though still very few and far between, specialists in the medical complications of severe eating disorders and malnourishment do exist, and they are capable of deciding on a case-by-case basis if emergency medical treatment is needed.
Comprehensive, specialized medical treatment should not be a last option after other medical hospitals have failed.
I was very lucky that someone suggested turning to Houston’s Medical Center for Eating Disorders, and that I was quickly admitted to ACUTE. But my being alive today should not be based on luck, when we have these resources and when doctors can receive additional training — because that means others in our cities and our world are not so lucky.
Things don’t always turn out like you plan. I never expected to again be a patient of anyone with “eating disorders” on their business card. But the ACUTE Center for Eating Disorders not only dealt skillfully with the medical complications multiple other emergency department doctors had missed, they also worked with specialists throughout Denver Health for a solution to the mouth ulcers that had me bouncing back and forth between other professionals for years.
I take one new medicine now that I’m home. And I live life again.
If you or someone you know is suffering from a severe eating disorder, contact the ACUTE Center for Eating Disorders at (844) 649-8844 to learn more about their program, to receive a free medical assessment or to begin the admission or referral process.
If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.
This piece originally appeared on the ACUTE Center for Eating Disorders’s LinkedIn.
Thinkstock photo via Chad Baker/Jason Reed/Ryan McVay