On measuring the wrong data for 2 years

On measuring the wrong data for 2 years

I tracked my heartburn from January 2020 until March 2022. I stopped tracking because that’s when I found out that I never had heartburn.

But for over 2 years, I dutifully tracked my (alleged) heartburn. At this point, I was 3 years into having trouble swallowing foods and waking through the night with heartburn-like pain.

I did all the tests and saw all the specialists, but everything came back normal. My doctor said, “I know you’re uncomfortable, but there’s not much else I can do.” I coped the best way I knew how; I created an iOS shortcut that added a row to a Google spreadsheet to track the date and time of my heartburn. There were charts.

A bar chart depicting the number of heartburn occurrences by month spanning from January 2000 through March 2022.

If I couldn’t fix the pain I had with swallowing food and drink then surely I could cure heartburn. I ran experiments to see if my heartburn changed. I tried:

  • gluten-free
  • low-acid
  • no dairy
  • no eggs
  • no dairy and no eggs
  • sleeping on 3″ wedge
  • sleeping on 7″ wedge
  • spending $300 on an uncomfortable heartburn pillow
  • not eating 3 hours before bed
  • staying upright for 3 hours after eating
  • no caffeine
  • every combination of heartburn medications
  • nasal sprays
  • muscle relaxers
  • taking a shot of apple cider vinegar before bed
  • acupuncture

When all my experiments failed, I asked my doctor to repeat all the tests. The last (and worst) test proved that I have achalasia, a rare swallowing disorder that impairs the esophagus’s ability to move food and liquid to the stomach. It was never heartburn.

One year ago today, I had surgery to treat achalasia. I now have an esophagus that works much better and this terribly boring data-measuring anecdote.

I was perfectly in control of all the data about my alleged heartburn, without actually being able to control it. My data collection became a strange comfort. A worry stone. Hope.

Katy sits in a hospital bed with a tray table. She has her arms out and a big smile. The tray table includes tomato soup, pudding, milk, and ice tea.
My first post-operation meal after fasting for over 24 hours.

I did learn a few things on my path to diagnosis:

  • Treat every appointment like it’s the first appointment.
  • Bring an agenda to appointments.
  • Request all medical records, keep them in a binder, and bring it to every appointment.
  • Explain symptoms by how they impact your quality of life.
  • And, the unfortunate truth, have health insurance, thousands of dollars, and flexible time.

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