How My Misdiagnoses Almost Led to My Death
On my 22nd birthday, a surgeon told me I had six weeks to live.
In response to his statement, his somber face and his outstretched hand across my hospital bed, I burst into laughter.
“Doc”, I said incredulously, “There’s no way I’m dying. I’m a vegan.”
The doctor stared back at me, a slightly bemused expression taking over his face.
I filled the stale hospital air with words.
“Last month I was walking around New York City and partying at rooftop bars in LA. The month before that, I climbed 500 granite steps to the top of a waterfall in Yosemite National Park. There’s no way. It doesn’t make sense.”
I looked up at the doctor’s nodding head and downturned eyes, and let him grab onto my hand.
“You need this surgery”, he said, finally making eye contact with me and repeating his ultimatum.
“Without it, you will die in six weeks.”
Finally defeated and devoid of excuses and energy, I nodded back. Surgery it was, then.
Two days before this conversation, I had been carrying on with my somewhat hectic life as a first-year law student, getting adjusted to the new workload and the new city that I had moved to about a month before. I had noticed a pain behind my left rib that had been getting steadily worse each day – I had thought that it was the result of carrying too many heavy textbooks, and decided to stop into the campus health center to get it checked out. I had been experiencing a host of other symptoms for the previous eight months, including early satiety, food aversions, and extreme nausea that had combined to lead to severe weight loss.
I had been soliciting advice from several different physicians, and was told over and over again the symptoms were all in my head. I had been diagnosed as anorexic so many times, that despite the fact I was convinced there was something physiologically wrong with me causing my nausea and satiety, I had all but given up on ever finding a correct diagnosis or being able to eat normally again. Which is why I was so surprised when the doctor at the health center, upon hearing my symptoms and seeing just how underweight I had become, insisted that I be immediately rushed to the ER for a CT scan. And, I was even more surprised when, a few hours later, an ER physician came up to my hospital bed with a perplexed expression and a piece of paper in her hand.
“We think we found the cause of the pain and of your weight loss”, she said, placing the paper gingerly onto my bed. “It’s called superior mesenteric artery syndrome. It’s really rare, I’ve only ever seen it in textbooks before.” She pointed at the paper, which showed a diagram of my upper GI tract, and illustrated how my superior mesenteric artery, an offshoot of the abdominal aorta, had been cinching the opening of my duodenum (part of the intestine) so that no food could move through it. An average duodenum, she said, had an opening of about 30 millimeters. Mine had a three millimeter opening, that was only open 50 percent of the time – the other 50 percent of the time, there was no opening at all.
Suddenly, the weight loss made sharp sense, as did the nausea and early satiety. All of the mysterious symptoms I had struggled with and accepted the blame for, it turned out, had a physiological origin after all. The ER doctor rushed me into a hospital gown and then into a room, where I stayed for the next three weeks. Because I was so underweight and malnourished, doctors first had to insert a feeding tube into my abdomen and pump my body with calories for a week before surgery. Then, the doctor performed a duodenal jejuneostomy, a type of intestinal bypass procedure where they cut the intestines to create a new pathway for food to pass through so it no longer encounters the blockage created by the superior mesenteric artery. Slowly but surely, the doctors said, my body would get used to sending food through this new pathway instead of the old, blocked one, and I would be able to eat again.
The three weeks I spent in the hospital were incredibly difficult. Not only was I literally fighting for my life, I was dealing with the emotional aspect of finally having a diagnosis – albeit a life-threatening one, but a diagnosis nonetheless – after being told for months that my symptoms had all been created in my own head.
Furthermore, I was attempting to deal with (and still am dealing with) the reality of a long road to recovery, one that has already included a month of painkillers and a deferment from school and will probably include many more months of rest and physical therapy as I try to rebuild what my body has lost.
How do you rebuild trust in a body that has betrayed you so deeply it forgot how to eat?
None of this has been easy.
But, I have been extraordinarily lucky to have the support of my family throughout this entire experience. I did not spend a single night in the hospital by myself, nor a single day – my parents were there each day, and my girlfriend spent each night with me, awakening from sleep to call the nurses and hold my hand until the painkillers took effect.
When I look back at this entire experience, the thing that stands out the most is just how close I had to get to death – six weeks away, apparently – in order for a physician to finally take my pain and my symptoms seriously.
And, this is not just something that has happened to me; according to a recent article published by The Atlantic, female pain is often seen as “constructed or exaggerated”, while female pain patients are often seen as melodramatic until they are able to “prove that they are as sick as male patients”. In fact, the article goes on to state, men in the United States wait an average of 49 minutes before receiving an analgesic for acute abdominal pain, while women wait an average of 65 minutes for the same thing. This can lead to severe physiological and psychological repercussions for female patients, many of whom (like me) have their treatment delayed simply because no one will believe that they are truly as sick as they say that they are.
Sometimes it feels like behind every ill or chronically ill person lies the shadows of those who have walked away from us. These are the people who have dismissed and misdiagnosed us, who have told us we were “crazy” or too sick or not sick enough or somehow not worthy of treatment or remission or life. Our lives are better off without these people in them, and yet standing in their shadows can feel a little cold at times.
For these times, we must remember – I must remember – the light and the warmth of those who stuck by us instead. These people – the physicians who believe us, the family members who fly to us, the partners that sleep in uncomfortable recliners and eat hospital chicken salad sandwiches so that we do not need to be alone – their light greatly outweighs the darkness of being left behind and dismissed, even repeatedly, because it is their actions that matter most.
To those who have stayed with me, I cannot thank you enough, and I only hope that someday I won’t have to. I hope to one day witness a healthcare system where a physician who believes your pain is standard rather than remarkable, where a young woman does not have to come a whisper away from death in order to be taken seriously.
Until that day comes, however, all I can do is thank God I got lucky this time and survived. I hope someday soon, for myself and countless other patients searching for diagnoses, answers, and light in the darkness, that there will not be a next time.