The edema caused by my kidney disease is with me everywhere I go

I winced as I stepped down onto a stair with my left foot. A swirl of dull, aching pain was joined by the feeling of skin tearing and puffiness. It felt like my ankle had an inflated life preserver wrapped tightly around it, cutting off more of my circulation with each step. This is something I deal with every time I enter or leave my home.

Constant swelling, or edema, is a comorbidity I experience every single day, ever since I developed a rare disease called atypical hemolytic uremic syndrome (aHUS). When I nearly died from the disease in September 2020, I sustained severe and permanent damage to several organs, including my kidneys, liver, heart, and uterus. My kidney damage was so severe that even after five months of dialysis and coming out of end-stage renal failure, I still have stage 4 chronic kidney disease (CKD).

Edema is the CKD symptom that affects me the most. My kidneys have a harder time processing and removing excess fluid from my body. For me, that fluid tends to pool in my lower legs, ankles, and feet.

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The more physically active I am, the worse the swelling is. It can be triggered by something as simple as taking my kids to the bus stop. It’s a quick task, but it involves me walking down two flights of stairs to the main level of our home, walking down two more flights of stairs to reach ground level (our home is on stilts), walking to the car, waiting up to 15 minutes for the bus, and climbing all of those stairs when I return. In that 30-minute time frame, my left ankle can swell to nearly the size of my thigh.

I recently saw my new nephrologist who checked me for edema. As I sat on the exam table, he pressed into my ankles and feet to check for pitting — where an indentation in the skin remains after pressure has been applied. This can be a sign of poor kidney function. He said I could easily have 10-15 pounds of excess fluid in my body, based on the severity of the edema in my ankles.

Typically my left side is worse than my right. I also have May-Thurner syndrome, which causes increased swelling on my left side. The edema now extends to my left arm and lower left back, affecting my sciatic nerve and blood pressure readings on that side.

It’s complicated

Because of my other comorbidities, I don’t have many options for managing edema. I do take furosemide, a diuretic, once a day to help my body break down and remove fluids. But I can’t take a higher dose, as it could affect my kidney function.

Elevating my ankles or lying down provides the most relief, sometimes reducing my swelling within 30 minutes. Occasionally I have flare-ups that are so bad I can’t walk, and I need high doses of steroids to decrease the swelling.

Compression socks and stockings work for many people with edema, but because my entire left side swells, the area just above the sock or stocking will swell excessively for me. Some people with May-Thurner syndrome benefit from having a stent placed, but I’m not a good candidate for that due to my increased bleeding risk from aHUS.

Edema is now a part of my everyday life. Some of my small strategies help, but I keep pushing my doctors and hoping for a better way to manage this frequent symptom.

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.