New diagnoses result in new grief and a new relationship with my body
A bout of pain lands me in the ER, diagnosed with DVT, pulmonary embolism
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I have often found that my experiences with sickle beta-zero thalassemia make me more resilient. I will recover from a weeklong hospital stay feeling stronger for beating the pain, and leave a doctor appointment feeling proud about how well I am adhering to my medications. But after my most recent vaso-occlusive crisis (VOC), I felt only sadness and grief.
Two months ago, I noticed that the pain I was having in my right thigh and calf hadn’t let up in more than two weeks. This was unusual for me as I typically experience pain for a few days at a time every few weeks.
Three days later, the pain became serious enough for me to make the trip to my clinic’s infusion center for outpatient pain management.
But I was then transferred to the emergency department to see if this VOC was related to acute chest syndrome or some other complication. Due to the unusually long time the pain had persisted, the emergency medicine physician elected to perform an ultrasound of the area. Following this, I received a chest X-ray and computed tomography (CT) scan with contrast dye — both more or less routine with this pain severity in a VOC.
To my surprise, the team found evidence of an older blood clot in my right calf and two newer ones in my lungs. I was diagnosed with deep vein thrombosis, or DVT, for the clot in my leg, and a pulmonary embolism because it had broken off and moved to my lungs.
After this VOC, big changes
Devastated does not even begin to explain how I felt getting these new diagnoses. I didn’t feel better, stronger, more confident, or more capable. Instead, I would now be on a treatment dose of a blood-thinning medication for the next six months and a maintenance dose thereafter for the rest of my life. I would no longer be able to sit cross-legged on my couch for hours at a time, as I always do, due to blood circulation concerns. I’d have to give up my prized airplane window seat for an aisle seat so I could walk around more frequently. My natural clumsiness could now result in me bleeding for an unusually long time. These are small, but impactful changes to my life.
About two months on, I understand that these are just a few of the things that I grieve about my life and my body now. Receiving these new diagnoses has created an unfamiliar relationship with my body, and I do not trust it yet. While I am deeply grateful that the pulmonary embolism was found before I had a life-threatening complication, I am still grieving for the woman who once got to live in a body free of blood clots.
Perhaps what I have learned, and will continue to learn, is that I cannot experience resilience without experiencing adversity first.
Note: Sickle Cell Disease 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 Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues about sickle cell disease.
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