How a stroke came out of my initial aHUS hospitalization

My left eye throbbed to the beat of my heart. Each pulse seemed more intense than the last. I’d had this headache off and on for over two months, but my then-new job had me waking up at 4:30 a.m. — definitely earlier than my normal — so I chalked up my headaches to not getting enough sleep and not drinking enough water. Little did I know I’d end up in the hospital with signs of a stroke and failures of multiple organs. All this when I was 36 years old.

During the last week before I was hospitalized, I’d developed more alarming symptoms. I was losing vision in my left eye and experiencing weakness on my left side. My headaches were as painful as migraines all the time. I was losing feeling in my legs when I walked more than a few feet. And there were other, less alarming symptoms.

When my children and I arrived at the hospital that September of 2020, I was called to the intake cubicle, where vitals are checked and symptoms recorded. My head was throbbing, and everything around me sounded muffled. I could barely hold my head up. The nurse took my blood pressure, and the machine beeped a loud, unusual tone. She gave the machine a confused look.

“I’m going to take that again,” she said with a faint smile. I shrugged my shoulders and didn’t think much of it. The cuff inflated again. Was it supposed to get this tight? The pressure was making my fingers go numb. Alarms sounded again. The nurse stepped away for a second before coming back with another concerned-looking nurse. “Let’s go ahead and take her back,” they said.

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My stroke symptoms

I thought that was great; I didn’t have to wait forever! But I didn’t realize that my blood pressure was 245/165 and I had the early signs of a stroke. I also had several other major medical emergencies and was dying from atypical hemolytic uremic syndrome (aHUS). The disease typically affects red blood cells, platelets, and kidneys, and can alone be life-threatening. But about 10% of aHUS patients also experience central nervous system complications, including strokes.

Strokes are medical emergencies that can lead to severe long-term consequences, even death. They occur when the blood supply to the brain is interrupted or reduced, perhaps by a blockage, such as a blood clot, or a rupture of blood vessels, which can prevent brain tissue from getting necessary oxygen. Stroke symptoms can vary depending on the part of the brain affected.

Some common signs of a stroke include sudden numbness or weakness, often on one side of the body leading to one-sided paralysis; confusion or trouble speaking; vision problems, including difficulty seeing in one or both eyes; and unexplained, intense headaches.

When aHUS is involved, patients may experience these symptoms because of thrombocytopenia, a major aHUS symptom that can destroy red blood cells, thus compromising blood flow to critical brain regions. Tiny blood clots can also form in major organs, which can ultimately damage them. In my case, that occurred in my kidneys, liver, brain, and uterine lining.

I was also experiencing stroke-risk levels of high blood pressure. Chronic elevation of blood pressure can weaken blood vessels in the brain, making them more susceptible to rupture or blockage. In patients with aHUS, the risk of developing secondary hypertension increases because of kidney dysfunction and fluid retention.

My symptoms developed into a stroke (not a ministroke, which it’d been called at first), and it’s forever changed the shape of the left side of my face. I have to hold the outer edge of my eyelid to apply makeup there because the eyelid and the corner of that eye are permanently altered. I also have to apply fake eyelashes differently on my left eye. And anytime I get a headache, it’s almost always on my left side now.

Being aware of the signs and symptoms of a stroke is essential, particularly for patients with aHUS and hypertension. Early recognition and treatment can significantly reduce the risk of long-term disability or death. If I’d waited any longer to go to the hospital, I wouldn’t be alive today.

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.