The Run-up and Run-down of My ANCA Vasculitis Diagnosis

What do you do when life as you know it and as you’ve dreamed about ceases to exist? That was the question I had to answer at 21 years old.

Six months before that late-evening “Are you sitting down?” call from two of my doctors, I would’ve never imagined that getting diagnosed with a rare, potentially life-threatening disease would be refreshing. I couldn’t comprehend the roller coaster that life had just strapped me into.

My diagnosis, granulomatosis with polyangiitis (GPA), is an incurable and potentially deadly form of anti-neutrophil cytoplasmic autoantibody (ANCA)-associated vasculitis (AAV). GPA causes inflammation of the blood vessels of the nose, throat, lungs, and kidneys.

Before I developed symptoms of GPA, I was a Division 1 distance runner at Winthrop University in my hometown of Rock Hill, South Carolina. While I’d yet to achieve the stardom that I’d dreamed about since I was 13, I’d managed to find a moderate level of success.

That wasn’t enough, though. AlI I ever wanted to do was become one of the fastest runners in the country. I daydreamed about NCAA titles, Olympic teams, world records. My first two years of college didn’t come close to scratching my itch for greatness.

Then something changed. And it’s not what I expected.

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Something’s wrong

At cross-country practice in early September 2008, I could barely catch my breath. It may sound ridiculous to those who don’t run 70 miles a week regularly, but you shouldn’t struggle to catch your breath if you’re in shape. This was new and alarming, and no one had an answer. My having an autoimmune disease wasn’t on anyone’s radar, nor should it have been.

My cross-country season was a mess. By November, I couldn’t run without having my muscles spasm, gasping for air, getting bloody noses, and feeling like I was going to pass out. December saw me lose almost 70% of my hearing, and in January, I spent my 21st birthday popping pain pills and sleeping. I was exhausted. Everything hurt. I was sleeping 12 to 16 hours a day, and I kept having this nagging feeling that something else was going on, but no one had any answers.

April saw me finally get that “Are you sitting down?” call from my doctors. I couldn’t have dreamed up a more cruel disease to attack a runner. GPA was attacking the very organs I needed to be good at my sport. But I had an answer to my medical questions, and that was a start.

While sitting in my rheumatologist’s office a few weeks after my diagnosis, the first question I asked — though I’ll never fully understand why — was “Will I be able to run again, doc?”

If only he and I had known what a ridiculous question that was. “Yes,” he replied, “people that have GPA are encouraged to exercise or run for health.” Years later he would remark, “If I knew what you were asking me, Brandon, I would’ve not only told you no, but hell no!”

It didn’t matter. I had the answer I needed.

The long road

It’s been a wild ride for the past 14 years. I’ve had three relapses, almost lost my kidneys twice, taken more medicine than I care to mention, and battled anxiety, depression, and panic attacks. Most importantly, I’m past the million-dollar medical-bill mark.

Yet for all these incredibly dark times, over the past decade I somehow got back to racing in college and became the 448th American to break the four-minute mile barrier. In 2016, I qualified for the Olympic trials in the 1,500 meter (the metric mile) and ran a Top 15 time in the U.S. that year. I followed that up in classic Brandon fashion with the worst year of health since I was diagnosed. I couldn’t get that storybook ending that I’d always dreamed about.

At 35, I finally feel like I can breathe. While my life has looked nothing like what I dreamed about at 13, it’s the life I have, and I’ve managed to find happiness.

This column is about me being me through all these wild experiences. Hopefully, it’ll encourage you to be yourself, too. We’re all rare here. And as tough as that is, it does make us special, and we should embrace that. None of us picked this life, but it’s the one we have. And that’s refreshing.

So to quote my favorite author, Hunter S. Thompson, “Life should not be a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming, ‘Wow! What a Ride!’”

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.