How complications of aHUS resulted in a liver hematoma
Thrombocytopenia is a constant concern with my rare disease
I awoke to bright sunshine bathing the side of my face. For a moment, the soothing warmth felt nice, but it was soon replaced by burning, searing pain. My breath hitched, and I immediately reached to my left side.
Where was I? What had happened? My head ached, my throat was dry, and I felt disoriented. It took a minute to get my bearings. I was on the floor in my living room, and the position of the sun made me think it was around 8 a.m. I closed my eyes and took a deep breath, only to cause another strike of hot pain in my left side. Something wasn’t right.
Memories of the previous night flooded my mind. I’d just been released from the intensive care unit (ICU) less than 48 hours earlier, after spending six weeks in the hospital, where I’d nearly died from a rare disease called atypical hemolytic uremic syndrome (aHUS). Little did I know I was experiencing a deadly situation caused by one of the worst symptoms of aHUS: thrombocytopenia.
How it started
I’d spent 10 hours the day before waiting in a plastic chair to receive outpatient dialysis. When I was released from the hospital, I didn’t have an outpatient dialysis spot arranged due to Medicaid/Medicare issues. So I had to wait as an “uninsured” patient to receive dialysis through the emergency room.
I hadn’t anticipated a 10-plus-hour wait, though, so I missed doses of crucial blood pressure medications and didn’t have any food or water. When I finally made it home 14 hours later, my feet and legs were so swollen that my skin split and bled. Before I could take my blood pressure medication, I blacked out and collapsed.
I ended up back in the ER with intense pain in my left side. It was easily some of the worst pain I’ve ever experienced. The ER doctors’ first guess was pancreatitis, which can be a comorbidity of aHUS. But a CT scan and a lactate dehydrogenase blood test proved otherwise. When I fell, I’d punctured my liver, and a hematoma, or pool of mostly clotted blood, now filled most of the left side of my abdomen.
Back to the ICU I went. If I’d fallen two months earlier, it probably would’ve left a bruise and nothing more. But aHUS had caused thrombocytopenia, or an abnormally low platelet level, which can result in excessive bleeding, bruising, and fatigue. Normal platelet counts in adults range from 150,000 to 450,000 platelets per microliter of blood. But when I was initially admitted to the ICU in September 2020, my platelet count was only 56,000 platelets per microliter.
To make matters worse, my liver was damaged by blood clots caused by aHUS. Uncontrolled bleeding was a huge risk for me.
Navigating life with a hematoma
I met with the surgical team to discuss the possibility of surgery to repair my liver bleed. However, they feared operating because I was still very weak, severely anemic, and at risk of excessive bleeding. In the meantime, I was restricted to bed rest.
A liver hematoma is visible on Shalana Jordan’s CT scan from January 2021. (Courtesy of Shalana Jordan)
Over the next two days it became abundantly clear that I was bleeding internally. A huge, dark purple bruise had formed on my left side from my armpit to my hip bone and across my center mass. It looked like I’d been in a car accident. Thankfully, after three days, another CT scan showed that the bleed had stopped spreading.
I remained on bed rest for another nine days, making it almost two months that I’d been in the hospital. I finally returned home in November 2020, but as it turned out, the hematoma remained.
By January 2021, I’d assumed it was gone, so I asked my primary care physician about the relentless abdominal pain I’d been having. The pain would keep me awake for hours at night and cause recurring nightmares when I finally fell asleep.
My doctor asked the usual questions and listened to my lungs, heart, and stomach. But when he went to press on my upper abdomen, it literally took my breath away and I cried out in pain. I was sent for a CT scan the next day, which explained it all: The liver hematoma was still there! It was smaller then when I was in the hospital, but it was still huge.
Today, my hematoma is a little larger than the palm of my hand. I had no idea I would have this thing for so long.
Thrombocytopenia is still a constant concern. My platelet levels are checked every 14 days and recently dipped below normal range. Between that and anemia, I often have bruises that I can’t explain. Because I bruise so easily, I can’t play-fight too much with my boys, am extra careful to avoid falls, and don’t do anything that would jar my body, like roller coasters or rafting. It’s tough having to regularly consider such things, but that’s just life with aHUS.
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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