Lee Anne’s Story: Her doctor recommended a treatment, then lost interest

Lee Anne’s Story: Her doctor recommended a treatment, but failed to warn her to stop her medication before a key medical test

Lee Anne, a 29-year-old patient from Brooklyn, has been living with a rare form of digestive tract paralysis.

For almost a third of her life, Lee has seen all kinds of health practitioners hoping to find a cure, a treatment that works, or in the very least, a way to take back some control over her daily life. Like so many patients that live with digestive tract paralysis, she wants to do what the rest of us take for granted – eat and enjoy it.

Her doctor referred her to a specialist at a prestigious New York hospital, who suggested a procedure called G-POEM (Gastric peroral endoscopic myotomy). The procedure allows food to leave the stomach faster and easier.

Lee was excited to try it. It held the possibility that she could eat and keep her food down, perhaps even live without constant nausea, something she’d been unable to do reliably since becoming sick.

She met with the doctor, who was keen to proceed with the G-POEM procedure. He told her about his past successes and experiences with clinical studies that validated the procedure. All Lee needed to do was get an updated Gastric Emptying Study to prove her underlying condition. It seemed like a mere formality.

Lee was already utilizing a gastric pacemaker, a device that stimulated a portion of her paralyzed stomach. She also was taking domperidone, a drug designed to increase the movements of the stomach. Both treatments helped reduce her nausea and vomiting symptoms while working to empty her stomach.

Unfortunately, no one informed Lee that she needed to stop taking her medication prior to Gastric Emptying Study. The results came back normal, even though there is nothing normal about Lee’s stomach. Worse still, Lee got the silent treatment – no follow up call with results, no call to say that the G-POEM procedure was cancelled – nothing.

When Lee finally got an appointment to the see her doctor, she sensed something wasn’t right.

“What a disaster. Even though I had only been there a month ago, no one knew who I was and the doctor mistook me for another patient,” she explains. “Not only did he refuse to consider the possibility of doing the procedure, he also started talking about things that had nothing to do with my case.”

Then, the kicker.
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“When I asked what I should do now, he said to ‘take a medication’ without explaining. Then, the nurse chimed in and said I was already ON medication,” she recalls. “He then just stared and shrugged and the appointment was over.”

Lee tried to share a journal article that might explain her severe symptoms, “but the doctor wouldn’t look at it.” Another red flag for Lee was that the G-POEM procedure the doctor had spoken so positively at her first visit, was suddenly downplayed: “The results of G-POEM are not conclusive.”

Was her doctor just having a bad day? Even if he was, is that an excuse for treating her like a stranger? It seemed like the information he shared about G-POEM at the first visit and at the follow up visit went from very positive to neutral. Which version was true? He hadn’t asked her to stop her domperidone before taking the GES. When that was pointed out, he refused to repeat the test, which could have shown different results.

Patients like Lee, who are living with some form of digestive tract paralysis suffer with their symptoms every day. Their best days aren’t as good as everyone else’s average day. Sometimes the gigantic medical-industrial-complex can lose sight of the humanity in the person they are there to treat.

Jim Sliney, Jr.​“I thought, for once, that I might be able to do something about my disease that wasn’t just a band aid,” she says. “All I can do is sit and cry and grieve over what this disease has taken from me. I’m so confused and disheartened.”

Jim Sliney, Jr., a Registered Medical Assistant, writes educational and advocacy articles for patients with rare and under-served diseases. Jim volunteers for G-PACT.org, where he serves on the board of directors as Newsletter Editor. Connect with the Bronx native on LinkedIn or Twitter.

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