How my body naturally reacts to one of my bad habits

My mouth practically watered at the sight of the cool, crisp, and bubbly fountain drink filling the cup. The cashier handed me my receipt and passed me the drink — my favorite part of eating out. I eagerly tore into the straw wrapper before I even sat down, craving that first refreshing sip. But to my disappointment, the drink tasted awful.

Notes of metal, mold, and something bitter swirled in my mouth. How disappointing! I swallowed hard in disbelief. I took another sip, swishing the drink around in my mouth, hoping for a different taste on my palate. But it was still the same. Great, I thought. My body was clearly telling me something was wrong. I needed water, not soda.

In September 2020, I nearly died from multiorgan failure caused by an ultra-rare disease called atypical hemolytic uremic syndrome (aHUS). This disease, along with immune thrombocytopenia and thrombotic thrombocytopenic purpura, wreaked havoc on my red blood cells, platelets, plasma, and several organs. It nearly destroyed my kidneys, liver, and heart. And it did destroy my uterus, resulting in a hysterectomy 10 months later.

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But worst of all, I sustained permanent kidney damage. At first, I was in complete renal failure and required dialysis. Biweekly infusions of a monoclonal antibody gave my kidneys the brief respite they needed to begin healing. After five months, I was able to come off dialysis, which felt miraculous. Yet five years later, I remain stuck at stage 4 chronic kidney disease (CKD), with my kidney function hovering between 15% and 20%.

As a chronic kidney patient, soda is one of the last things I should be drinking. CKD makes it harder for my kidneys to filter waste and fluid from my blood, and foods or drinks high in processed sugar place extra metabolic stress on already overworked kidneys. I’ve tried repeatedly to quit drinking soda — if not for my kidneys’ sake, then for the sake of weight loss. My fiancé and I often joke that I “drink my calories,” since I tend to consume more daily calories through beverages than solid food. But I’m absolutely hooked on soda.

I’ve noticed that when my body starts to get dehydrated, it’s as if my taste buds shift. Suddenly, sodas, juice, and other sweet drinks all taste “off.” It’s like having a built-in safety feature. Sometimes those drinks taste wrong for a few hours, days, or even weeks — basically, until my body decides it’s hydrated enough.

I’m not sure if anyone else experiences this strange symptom, and it’s always hard to describe to others. Is it a neurological complication from aHUS? A gastrointestinal issue, which can also be common with CKD? Dysgeusia? Or maybe a new superpower unique to me? I might never have a definitive answer. But until I do, at least my body is working hard behind the scenes to keep me safe.

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.