Who knew I would develop medical ‘superpowers’ during my aHUS adventures?

A columnist's body sends warning signs when symptoms need to be monitored

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by Shalana Jordan |

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banner image for Shalana Jordan's column Walking on Water, which features a woman on the left walking on a greenish body of water.

Becoming sick with a rare and chronic disease is life-changing. It can affect your health, physical strength, diet, and so much more. But I never knew I would gain new “superpowers,” too, including a better understanding of my own body.

In September 2020, I spent almost two months in the ICU with multiorgan failure. I was eventually diagnosed with atypical hemolytic uremic syndrome (aHUS). The initial attack destroyed a lot of my blood and permanently damaged my kidneys, liver, heart, and uterus.

Currently, I’m stable and being treated with Soliris (eculizumab), a humanized monoclonal antibody. But “stable” for me is still very sick for a normal person. This has taught me to watch for strange signs my body gives me when things are beginning to go awry.

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I have stage 4 kidney disease due to aHUS, so my kidneys are heavily damaged and always on the brink of needing dialysis again. My kidney function hovers between 15% and 22%. But if my kidney function begins to drop below 20%, I’ve noticed that food and drinks start to taste strange. Starch starts to taste like sawdust, while sodas taste bitter like black coffee. Only water tastes like it should. And I believe that’s because it’s what my body needs in those moments.

The next strange superpower is also related to taste. While in the hospital, I always had peripherally inserted central catheter lines running in each arm for quick access. I needed 18 blood transfusions, countless IV bags of fluids, medications, and my chemotherapy — all via IV.

I can now “taste” anything I receive through an IV. Blood transfusions were the worst. The metallic and almost meaty taste of blood in the back of my throat was quite unsettling. And when my chemo nurse runs a line and flushes it with saline, I can taste that as well. It tastes the way eye drops smell.

Next up is my blood pressure. I have somewhat uncontrolled hypertension. So when my blood pressure starts to spike, I get a blinding migraine, along with chest pain, heightened anxiety, and a loss of appetite. My skin starts to itch all over, and it feels like my body is going to climb out of my skin. I can even guess what my blood pressure is almost every time based on where my symptoms are at.

My body even has what I consider a shut-down response. Some days I feel better than others, so on those days, I try to be as active as possible. But no matter how good I feel, my body only has a finite amount of energy. If I overdo it, my body just flat out refuses to operate the next day.

When I wake up following active days, my muscles and bones feel like I’ve been in a car wreck. I feel swollen, stiff, and sore, as if I’m bruised all over. And the thirst! I have an insatiable thirst that I can’t quench after a busy day.

The last major change in my body is my equilibrium. My blood pressure is strange because of my hypertension and May-Thurner syndrome. So my blood pressure in my left arm is always much higher than my right arm. (For example, my right arm might be 130/85 while my left arm is 260/130, which is a huge and dangerous difference.)

If my blood pressure starts to climb on my left side, I start to get dizzy. Then my ears have a hard time hearing. They feel like they’re muffled or clogged with water, and they start ringing. If I don’t stop to rest or take medicine, I will black out.

It’s strange to think about operating in a new body. Learning all the strange traits I’ve picked up has been an adventure, to say the least. But it’s pretty amazing that my body has found ways to communicate this critical information to my brain. I’m always at risk of relapse or renal failure, so thankfully, my body keeps me informed.

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.


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