Learning the hard way about the risk of blood clots in ITP
A recent incident could've been deadly for this columnist
I watched in horror as the muscle distortion from an intense charley horse moved down my lower leg, bruising my skin as it went. It was like a Matchbox car moving under my skin. My shock and awe were interrupted only by the immense pain that shot through my calf.
My leg had been sore, swollen, and hurting all day, so I’d been rubbing it while watching TV that evening. Little did I know I was breaking up a dangerous blood clot in my leg that would lead to post-thrombotic syndrome.
In 2018, I was diagnosed with immune thrombocytopenia (ITP), the first of a few blood diseases I now suffer from. Even though ITP is rare, my medical team diagnosed it fairly quickly, as my low platelet count was a telltale symptom.
According to Johns Hopkins Medicine, a normal platelet count for an adult is between 150,000 and 450,000 platelets per microliter of blood. My count was 530. This was an immediate red flag and even “impressed” some of my providers. Many had no idea how I was even functioning.
A dangerous complication
Recently, though, I had a strange complication: the blood clot in my leg. Because platelets play a crucial role in blood clotting, it doesn’t seem like a low platelet count would be associated with thrombosis. However, studies have found that ITP patients are at a greater risk for blood clots than healthy individuals.
I regularly deal with painful and debilitating swelling in my feet, ankles, and lower legs. This is normally due to my low kidney function, a result of permanent kidney damage from the onset of my atypical hemolytic uremic syndrome. But lately, severe swelling in my left leg has led to worsening nerve damage, splitting skin, and issues with walking. So, a few weeks ago, one of my doctors sent me for an ultrasound to check for a blood clot. Unfortunately, my entire leg didn’t get scanned.
The results didn’t show a blood clot, so we assumed it was a false alarm. But my swelling persisted to the point that I couldn’t walk for two days and then needed a cane for 10 days. This was the worst leg flare I’d ever experienced.
I ended up meeting with a new primary care provider about a different issue, but she was concerned about the swelling in my ankle and foot. She brought in a sonographer and did an ultrasound of my entire leg right there in the office.
The scan revealed a blood clot in my lower leg that had broken up into smaller pieces and damaged several areas. All of the abnormal swelling is post-thrombotic syndrome. I was just as shocked as the doctor and sonographer were. This clot could have caused further complications or even killed me. It’s terrifying to think how potentially deadly it was.
Normally, I’d be given blood thinners for a clot, but my hemoglobin and platelet levels are too low for me to safely take them. I am having more blood work done this week and will receive a blood transfusion as well.
This situation is a reminder to advocate for ourselves as patients. My gut told me my entire leg should have been scanned during the first ultrasound, and I’m mad at myself for not speaking up. This mistake could’ve been deadly. Always ask questions, take control of your medical care, and advocate for yourself.
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.Â
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