Reflecting on health anniversaries reminds me of how far I’ve come

Anniversaries are typically a call for celebration, whether you’re honoring a wedding, the day you started at a job, or a special event or milestone. But for me, this time of year brings the anniversary of when I almost died.

In September 2020, I was admitted to the intensive care unit, where I spent nearly two months battling multiorgan failure caused by a rare disease called atypical hemolytic uremic syndrome (aHUS). I’d rapidly gone from relatively healthy and active to barely able to walk and near death.

Despite my reluctance, I was thrust into the medical world of biopsies, blood transfusions, dialysis, hemolytic anemia, plasmapheresis, chemotherapy, immunizations, constant blood draws, and much more. Each day brought another treatment or test — an adventure into the unknown.

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Recently, Facebook’s Memories feature has been sharing glimpses of the medical odyssey I experienced in the fall of 2020.

Every day, I’m shown a social media memory of a bad dialysis session, or the fall that punctured my liver. The posts from three years ago remind me of the struggles I endured and how they affected my mental state.

Each memory triggers a sensory response. I might taste blood in the back of my throat, recalling my multiple blood transfusions, or hear the echo of beeping heart monitors in a quiet and cold ICU. The posts can even cause tightness in my chest and shallow breathing before I realize what’s happening.

I’ve battled medical post-traumatic stress disorder (PTSD) ever since my ordeal, so I expect to be triggered by certain medical situations, such as a nurse struggling to start my IV for chemotherapy, or a flare in my feet preventing me from walking for a couple of days. I know I’m not alone in these challenges, as more than a quarter of aHUS patients experience symptoms of PTSD.

But I never imagined black-and-white words on a screen could trigger such a strong physical response.

Painful but valuable reminders

While these anniversaries rehash old wounds, they also impress me and remind me of what I survived. They remind me of how far I’ve come.

I reflect on the physical strength I had to rebuild after losing 30% of my muscle mass in the first few months I was sick. How I learned to accommodate my new limitations and daily health struggles. How I lost everything and hung on just long enough to climb from the ashes and rebuild my life.

I learned how to stretch a dollar further than I ever thought possible after living well below the federal poverty level for more than two years. I’ve learned that time with my family is and needs to remain my No. 1 priority. And I even regained enough strength to resume traveling the world.

These anniversaries signify horrible times in my life and even more amazing victories. Each one gives me another year of achievements and adventures to reflect upon and appreciate. Surviving what I did and living each day with this illness is nothing short of walking on water.

Note: aHUS 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 aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.