My edema management is becoming increasingly difficult

A dull but fierce ache swept through my left leg like wildfire. I was sound asleep until a charley horse ripped through my calf muscle and woke me. The pain was so intense that I gasped and ripped away the blankets to assess my leg. My fiancé and I watched in horror as the cramping visibly moved down my leg, bruising my skin as it went. The cramping settled in my ankle and foot, causing my foot and toes to uncontrollably twist and curl like an old apple tree. I was now on day six of this wretched symptom.

In the fall of 2020, I nearly died of an ultrarare disease called atypical hemolytic uremic syndrome (aHUS). I sustained severe and permanent damage to several organs, including my kidneys, liver, heart, and uterus. My kidney damage was so severe that I was in end-stage renal failure. After five months of dialysis and other treatments, I now have stage 4 chronic kidney disease (CKD).

CKD causes some of my worst and most constant comorbidities: inflammation and edema. My kidneys function at only 16%-21%, meaning they’re unable to properly process all of the fluid in my body. As a result, excess fluid pools in my feet and ankles. Normally, this painful swelling comes and goes. It’s worse on days when I’m physically active or do a lot of chores around the house. If I relax at home, then it subsides.

But for the past week, the undulating waves of cramping and pain have been relentless. My toes will go numb from the constant pressure, then tingle as the feeling returns. I’ve been walking with a limp and using a cane due to the pain in my left leg.

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Other complications

As if the edema weren’t bad enough, I can tell the symptoms of my May-Thurner syndrome are also intensifying. This condition causes my entire left side to swell more than my right side. Normally, it affects my left leg and upper left arm. But my left fingers are so swollen that I can’t remove my engagement ring. My left palm and fingers are much larger than those on my right hand.

I’ve tried just about everything, including rest, heat, ice, elevation, compression, furosemide (a diuretic), pain medications, and steroids. But every morning, it seems worse. Usually, any swelling goes away overnight, but my ankle and foot just keep getting bigger. The swelling is so excessive that it looks like I have a chunky, prosthetic fake foot and ankle attached to my own.

To add to my dilemma, my new home is two stories and on stilts, meaning I have to traverse two flights of stairs to get from my bedroom to the main floor, and another two flights to leave the house. My right leg is getting sore from me leaning on it.

But worst of all is the cramping. I have a very high pain threshold, but the cramps in my leg and foot are miserable. They’re easily one of the most painful things I’ve experienced, rivaled only by five days of labor with my second child.

For now, in order to function daily, I’ve been taking prednisone around the clock. It seems to be the only thing that provides any measure of relief, even though the cramping still happens. I have to be careful when taking steroids, as I tend to experience a crash between doses or when I take too much. Intense headaches, nausea, and pain are just an everyday occurrence now.

I have to be even more careful on the days I have my Soliris (eculizumab) infusion, the aHUS treatment I’ll need for the rest of my life. I developed an allergy to the medication, so I’m given intravenous steroids to lessen the hives. Together, these two types of steroids can increase my blood pressure, make me nauseous, and even raise my body temperature.

I need to find some kind of balance and long-term treatment for the edema. I’m fine with occasional symptoms, but constant swelling makes it hard to function. I can’t cook without propping my lower leg on a chair, I can’t walk long distances, and I can barely climb up and down the stairs at home. Even walking around a grocery store has become a huge challenge. Going forward, I plan to learn a little more about my diseases every day in hopes of finding relief.

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.