For years, Rachel Hunt was regularly jolted awake by intense pain in her chest and back and a racing heart. Throughout many doctor's visits, tests, and misdiagnoses, her symptoms only worsened — and got stranger. Writing for The Washington Post, Hunt explains how she finally found a path to diagnosis.
In college, Hunt began waking every night with chest pain and a high heart rate. Her roommate even said she sometimes heard Hunt choking at night through the thin walls.
Hunt had experienced insomnia as a child, but waking every night in agonizing pain was a new development. "I'd wake up, heart thumping, and chug water to make the pain go away, but it always returned the next night," Hunt wrote.
After failing to gain any insight from an in-home sleep study, Hunt's psychiatrist thought she might be having panic attacks in her sleep brought on by anxiety from the COVID-19 pandemic.
She accepted her doctor's explanation at the time. But after Hunt graduated, her symptoms became stranger.
Hunt began waking up coughing violently with water flowing out of her nose. Hunt's throat also started to close while she was eating, which sometimes made her vomit. Without consistent sleep and under threat of throwing up whenever she ate, Hunt's work, social life, and mental health suffered.
Thinking she had gastroesophageal reflux disease, Hunt took the advice of a homeopath: She cut gluten from her diet, avoided eating at night, and started taking herbal supplements.
When that didn't work, Hunt decided to undergo a sleep study in a lab where she could be monitored by a sleep technologist. During the eight-hour study, she stopped breathing 300 times. The pulmonologist diagnosed her with severe sleep apnea and prescribed a continuous positive airway pressure (CPAP) machine.
But something still felt off: Hunt's chest pain sharpened, her vomiting got worse, and swallowing became harder and harder.
Hunt finally visited a gastroenterologist, who scheduled an endoscopy. The first endoscopy was cut short: Although Hunt had fasted before the procedure, the doctors found her esophagus clogged. Before rescheduling the endoscopy, Hunt underwent an esophagram, or barium swallow test, to help doctors see whether her esophagus was draining correctly.
In the middle of this process, Hunt was told she had stage 2 breast cancer, which made finding the cause of her esophageal problems more urgent. At the second endoscopy, doctors cleared Hunt's esophagus of debris and took tissue samples to test for esophageal cancer.
Hunt didn't have cancer in her esophagus. But the images that came back from the esophagram pointed to achalasia, a rare condition in which the esophageal muscles cannot contract correctly, which leads to difficulties swallowing and regurgitation.
Typically, achalasia is diagnosed with esophageal manometry, in which a pressure-sensitive tube is eased down the throat while the patient remains awake. But the thought of manometry felt overwhelming to Hunt, who was also dealing with chemotherapy for her breast cancer. So, she decided with her achalasia specialist to pause the process of diagnosis until her cancer was under control.
But not long after her first round of chemo, Hunt ended up in the ED when she was unable to eat much for two days. "Swallowing food and water felt like swallowing rocks," she wrote.
Instead of manometry, a specialist did an endoscopy the next day to confirm the diagnosis: achalasia.
Hunt had three treatment options for her achalasia. First, doctors could use pneumatic dilation to inflate her esophageal sphincter with a balloon. Second, in the Heller myotomy, surgeons could cut the muscles in Hunt's esophageal sphincter. Finally, a peroral endoscopic myotomy (POEM) would involve an incision in her esophageal lining.
Hunt chose POEM because she felt it would have the longest lasting effect. Though treatment and recovery became complicated by a blocked esophagus during surgery, POEM was the right treatment for Hunt's achalasia.
It had taken four years from the start of her worst symptoms to their diagnosis and treatment, but after the surgery, Hunt's quality of life has improved. "Even though achalasia is something I'll have to monitor for the rest of my life, now, I feel like I can finally breathe again," she wrote. (Hunt, Washington Post, 7/6)
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