Years later, I’m still dealing with the effects of an ITP crisis
Intense pain after a blackout turned out to be a dangerous hematoma
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I felt the warm sunlight bathing my face through the window. For a moment, it felt so nice, but then I remembered that the sun doesn’t shine into my bedroom window in the mornings. Something was off.
I stretched my arms and, immediately, searing pain shot through my torso — pain so intense it took my breath away.
As I tried to gather my thoughts, I quickly realized that I was lying on the living room floor. My head throbbed with each heartbeat, my throat was dry, and my lips were cracked. I felt disoriented, and the pain in my torso made it even harder to focus. What had happened?
Memories from the past 24 hours swirled in my mind as I tried to piece together the events. I had just been released from the hospital’s intensive care unit less than 48 hours earlier, after spending nearly six weeks there, having nearly died from a rare disease called atypical hemolytic uremic syndrome (aHUS). Little did I know that I was now experiencing a potentially deadly situation caused by one of my secondary diseases, immune thrombocytopenia (ITP).
In it for the long haul
The day before, I had spent 10 hours waiting to receive outpatient dialysis. When I was released from the hospital, I couldn’t immediately get outpatient dialysis due to issues with Medicaid and Medicare. As a result, I had to wait as an “uninsured” patient to receive dialysis through the emergency room. The lengthy wait, combined with the lack of evening medications and not eating all day, caused me to collapse at home and black out.
Now back in the ER, the intense pain in my side worsened. It was easily one of the top three most painful experiences of my life. The ER doctors initially suspected pancreatitis, which can be a comorbidity of aHUS. However, a CT scan and a lactate dehydrogenase blood test ruled that out. It turned out that when I fell, I had punctured my liver, leading to a hematoma (a pool of mostly clotted blood) that filled most of the left side of my abdomen.
So I was readmitted to the ICU. Even though my primary disease, aHUS, was stable at the moment, ITP was responsible for my current medical emergency. I had been diagnosed with ITP two years prior, in 2018. This condition had caused abnormally low platelet levels, resulting in excessive bleeding, bruising, and relentless fatigue. My medical team had diagnosed it quickly, and after receiving blood transfusions, platelets, and corticosteroids, I was sent on my way.
However, this current situation was dire. Normal platelet counts in adults range from 150,000 to 450,000 platelets per microliter of blood, but mine was only at 27,000 — lower than it had been during my previous ICU stay for aHUS. My liver was already damaged by blood clots caused by aHUS, which made my liver tissue weak.
The surgical team came to discuss a possible repair, but they were hesitant to operate because I was very weak, severely anemic, and at risk for excessive bleeding. So I was kept on bed rest, and we waited.
Over the next two days, it became clear that I was bleeding internally. A large, dark purple bruise formed on my left side, stretching from my chest to my hip bone and across my body, making it look like I had been in a horrific car accident. Surprisingly, after three days, another CT scan showed that the bleeding had stopped spreading.
I remained on bed rest for another nine days before I was finally released. I received more platelets and was monitored closely. When I returned home, the hematoma was still present and posed a constant risk.
In January 2021, I continued to experience relentless abdominal pain that kept me awake for hours each night, causing recurring nightmares and night sweats once I eventually fell asleep. During an appointment, my primary care physician examined my abdomen and pressed on my upper stomach, which caused me to cry out in pain. A CT scan the next day confirmed that the liver hematoma was still there! It was smaller than the initial bleed, but still significant.
Today, nearly five years later, my hematoma is a little smaller than the palm of my hand. I had no idea I would have it for so long.
ITP remains a constant concern. With numerous other diseases and comorbidities, ITP poses ongoing risks. My platelet levels are checked every 14 days, and I often have unexplained bruises. Because I bruise so easily, I can’t play-fight with my growing sons. I also have to avoid falls, bumping into things, and any activities that could jar my body, such as roller coasters, for example. It’s challenging to navigate these limitations, but I must always keep an eye on my ITP symptoms.
Note: Bleeding Disorders News is strictly a news and information website about the syndrome. 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 Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.
