My stage 4 chronic kidney disease makes me monitor all I consume

My mouth all but watered at the thought of a crisp, cool drink, the sound of ice swirling in a cup as a drop of condensation trickles down the side. I envisioned the first sip flooding my mouth with a burst of sweet fruity flavors. On this day, I was absolutely going to reward myself with a cool Starbucks refresher.

The outside temperature was well over 100 degrees on that sunny day, and I’d been in and out of the heat as I did extreme couponing for a couple of hours. My throat was dry each time I swallowed, so it was past time for a drink. I got to the Starbucks drive-thru, where the menu board caught my eye.

I usually order one of the same two drinks: a strawberry açaí refresher with extra ice, extra base syrup, and no dried fruit, or an iced white chocolate mocha with extra syrup. But on this day, I saw that the new summer refreshers had been released: pineapple, mango, and kiwi star fruit. Suddenly, I wasn’t sure what I wanted. My mind immediately jumped to the kiwi star fruit drink. I absolutely love kiwi, and it’s rare to see it used commercially.

I was a split second away from ordering this new drink when something suddenly hit me: I can’t order it unless I want to die! I almost made a potentially fatal mistake. Because of my rare disease and incredibly low kidney function, I cannot under any circumstances consume star fruit.

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Back in 2020 I nearly died of atypical hemolytic uremic syndrome (aHUS). It nearly destroyed my kidneys, liver, and uterus and damaged my heart. I needed dialysis for five months, a hysterectomy nine months later, and I still do chemotherapy to manage the disease. My kidney damage was mostly permanent, so I’m stuck in stage 4 chronic kidney disease (CKD). My kidney function hovers between 15% and 20%.

Preserving what little kidney function I have is one of my top medical priorities. I never want to end up back on dialysis. I have to be careful about things I eat and drink, as well as over-the-counter medications and supplements.

Kidney patients need to be leery of their consumption of potassium, phosphorus, protein, vitamin D, electrolyte drinks, and ibuprofen, among others. All of those tax your kidneys when too much is consumed, which means sports drinks, alcohol, oatmeal, dark sodas, red meat, bananas, Advil, Motrin, and much more are off limits or need to be consumed in moderation.

But the strangest and most urgent do-not-consume item is star fruit. It has a neurotoxin, caramboxin, that healthy kidneys can filter out, but CKD patients can’t. And there are consequences: It can cause central nervous system issues like seizures, confusion, and even death.

Star fruit also contains oxalate, which in high concentrations can further damage weak kidneys and thus lower kidney function. My medical team stressed that this item was the one I could never, ever have again.

It was so easy to almost make a dangerous error at that drive-thru. Star fruit is used so rarely at food establishments that I didn’t even think about it when I first saw the drink on the menu. But thankfully, I remembered before it was too late.

My medical issues are now stable enough for me to consume small amounts of many of the foods mentioned above, but I still don’t touch alcohol, ibuprofen, and star fruit. Guess I’ll just stick to my strawberry açaí refreshers at Starbucks.

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.