The long road back

I’m glad to say that I’ll be going back to regular consulting work again very soon. If you’re interested in the gory medical details that led me to quit consulting work (and write five computer programming books and a couple thousand blog posts), here you go:

  • Back in 1999 I founded and co-owned a small software consulting company
  • Over time I knew I was sicker than the average person, and it was getting worse
  • Despite symptoms like constantly getting colds, the flu every winter, pink eye, difficulty breathing (intermittent asthma), rashes, compartment syndrome in both legs due to jogging, blood blisters in multiple places, migraines, and heart issues (irregular heartbeat and SVT), doctors suggested it was in my head
  • Figuring I might die before doctors figured anything out, I sold my business and moved to Alaska to at least have some fun before it was over
  • I got a bad digestive illness two months after moving there; that led to having my gallbladder removed
  • Symptoms kept getting worse:
    • I road a bicycle every day, and suddenly couldn’t ride as far one day as I could the previous day; this kept getting worse
    • Diagnosed with Hashimoto’s disease
  • For family reasons I moved to Colorado
  • New symptoms and medical procedures included:
    • Enlarged liver and spleen
    • Increasing muscle weakness
    • Thyroid cancer
    • Brain fog
    • Flushing
    • Hives
    • More rashes and reactions
    • Peripheral neuropathy
    • Went unconscious seven times (syncope)
    • Nearly went unconscious over 20 times more (pre-syncope)
    • A TEE test when a previous test showed that blood was flowing backwards inside my heart
    • Three “fake heart attacks” (what in retrospect was allergic angina)
    • 17 ER visits, one of which showed my kidneys were rapidly failing (this would eventually be a good thing, because it led to further lab tests that eventually led to a proper diagnosis and solution)
    • Several bouts of diverticulitis
    • A PICC line in my arm, followed by a blood clot
    • At one point doctors thought I had an adrenal tumor that could kill me any day and the good news was that there was a 90% chance of surviving that surgery
    • Over 100 blood tests
    • Nearly 20 CT scans and MRIs
    • Anaphylactic reaction to MRI contrast
    • An angiogram after a nuclear stress test showed a dead spot in my heart after my third fake heart attack
    • Had to have part of my colon removed
    • The 24th and 25th doctors finally found anomalies in lab results (only because the “fake kidney failure” led them to do those tests)

Finally an answer

In late 2016 those last two doctors thought I might have a rare blood disease called Mastocytosis. (So rare, it wasn’t featured on House until Season 8.) I tested negative for that, but this led to the final diagnosis of another rare blood disease, Mast Cell Activation Syndrome (MCAS). Statistically, it’s so rare that there are only 26 of us in Colorado.

If you’ve ever heard of the “Bubble Boy” or “Boy In the Plastic Bubble,” this disease is related to that. You can read these stories about two women who have a more severe version of this illness at these links:

Following that diagnosis I almost immediately switched to a diet of eating only a select group of organic vegetables and fruits, and all of the symptoms rapidly dissipated. I still had to have three more surgeries in 2017 and 2018 to clean up problems that were caused by the untreated MCAS, but these days — January, 2019 — I feel better than I’ve felt in twenty years, exercising hard every other day and working a full schedule. And after writing books like Scala Cookbook, Functional Programming, Simplified, and Hello, Scala while mostly hoping not to die, I’ll be going back to regular programming/consulting work in about a month.

(And yes, there will also be more books. Three more books are currently in the works.)

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