Severe hypertension is one of my most challenging aHUS symptoms

High blood pressure levels were an early indicator of my rare disease

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by Shalana Jordan |

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I was experiencing the worst migraine of my life. I could feel my heartbeat in my eyes and forehead. Rubbing my temples seemed like the appropriate thing to do, but it provided little relief. The fluorescent lights in the emergency room made me squint each time I lifted my head.

Someone was talking to me, but I couldn’t hear anything she was saying. Everything sounded like I was underwater. I swallowed hard to make my ears pop, and my throat burned from the coughing fit I’d had earlier.

“I’m sorry, what?” I asked. The receptionist in the ER gave me a warm but worried smile. She directed me and my boys to a triage cubicle for basic intake, where a nurse measured my oxygen levels, heart rate, and blood pressure. I didn’t think much of the tests, which had always seemed so pointless.

But on that day in September 2020, my perspective was forever changed.

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I fussed at my 4- and 5-year-old for rolling around on the floor and apologized for their shenanigans. The nurse taking my blood pressure laughed and joked about her nephews. It was all lighthearted banter until she took my blood pressure. Her smile quickly faded as loud beeping came from the machine.

“Um, let’s take your blood pressure again. That can’t be right.” She started the machine again, but got the same result. She grabbed a stethoscope and took my pressure manually. I asked if everything was OK, and she said she’d be back. Within seconds, another nurse directed us to a larger triage room in the emergency department.

It seemed odd that I was taken back so fast. But I could barely hold my head up and my vision was starting to blur, so I was grateful to be out of the waiting room. The new nurse hooked me up to another machine. This one was connected to a computer monitor above my bed.

The alarms sounded again: My blood pressure was 245/165 mmHg. According to the U.S. Centers for Disease Control and Prevention, normal blood pressure levels are less than 120/80 mmHg.

The nurse’s eyes were wide; she seemed just as shocked as I was. This marked the start of my journey with uncontrolled hypertension and atypical hemolytic uremic syndrome (aHUS).

A common, but life-threatening aHUS symptom

I’d gone to the ER thinking I had COVID-19 again. I hadn’t felt well in months, but I’d declined rapidly over the past week. I’d spiked a high fever and was experiencing weakness, coughing, difficulty catching my breath, and numbness in my legs, and I was throwing up blood. Little did I know I was in multiorgan failure from a rare disease that had been triggered by COVID-19.

I nearly died and spent just shy of two months in the intensive care unit. Once I was diagnosed, I scoured the internet for information about the disease, support groups, case studies, treatments, and prognosis.

My life has been forever changed because of aHUS. I was on dialysis for five months, have undergone multiple surgeries, and still deal with biweekly bloodwork, chemotherapy, and various comorbidities. But one of the symptoms that affects me the most is something no one prepared me for: severe and malignant hypertension. I now suffer from high blood pressure regularly.

As aHUS News reported in 2019, a Spanish study published in the journal Kidney International found that “severe and life-threatening hypertension is common in people with atypical hemolytic uremic syndrome.”

Before aHUS, I never even had above-average blood pressure. And here I was with higher levels than many medical professionals on my team had ever seen. A couple nurses even came by to ask if they could take photos of my blood pressure reading, as they’d probably never see levels this high again. More than three years later, I still get a kick out of telling people about those early readings.

The arduous journey continues

Today, I’m still having issues with uncontrolled hypertension. I take three blood pressure medications multiple times a day, but my levels still dramatically spike and drop. They tend to spike if I physically do too much or am under a lot of stress.

Occasionally, my blood pressure is too high when I arrive for my chemotherapy infusions, and the nurses won’t administer my medicine until my second number (known as diastolic blood pressure) drops below 100 mmHg. Each chemo session now involves IV blood pressure medicine.

My medical team is on the hunt for the proper combination of medications, but even that is a stressful endeavor. I was initially on a medication that kept my blood pressure low but caused severe edema, May-Thurner syndrome, and nerve damage to my left foot. Recently, we tried a different medication that caused stroke-like symptoms and landed me in the ER again.

With so many blood pressure medication options out there, I fear it will be an arduous journey to find what works best for me. Severe hypertension is just one of many aHUS symptoms that rears its ugly head each and every day.

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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