Thursday, September 19, 2019
Blood, Guts and Glory: Thalassemia Patients Battle for a Better Life :: Journalism Journalistic Essays
Blood, Guts and Glory: Thalassemia Patients Battle for a Better Life When his company offered Vikram*, a systems analyst in Toronto, a transfer to Montreal with a promotion and pay raise, he was delighted but concerned. The 31-year-old unmarried Vikram worked twice as hard in his job to make up for the time he took off for medical reasons. The promotion was a justified reward for his hard work. But the question bothering Vikram, the issue that would determine his decision whether to accept the posting, was: Will I find a Thalassemia care center in Montreal? It was not the first time this unique blood disorder was the deciding factor for the choices Vikram made. ââ¬Å"Thalassemia makes all the decisions for me,â⬠he said. At nine months, Vikram was diagnosed with Thalassemia, a genetic non-communicable blood disorder. Born and raised in India, he spent his early years in and out of hospitals. His parents moved to Canada but Vikram had to stay back with his grandparents because his parents could not cope with earning a living and paying his medical bills. ââ¬Å"After my grandparents passed away, I struggled with the costs and poor facilities for Thalassemia care in Delhi before deciding to move to Canada,â⬠said Vikram, who shifted to Toronto when he was in his twenties. He has needed consistent and frequent blood transfusions, ranging from one unit (or bag) of blood every two months to one unit every seven days. Currently, he needs three units of blood every four weeks. Vikram explained that he visits a clinic for the transfusion. Here, a pump pushes blood into his veins at a constant speed. Each unit takes about two hours to be transfused which means Vikram must spend from six to eight hours in the clinic. This transfusion gives his blood an iron overload. Vikarm then has to take iron chelation (kee-LAY-shun) which involves infusions of the drug Desferal to remove excessive iron from his blood and organs for five full days. The Desferal infusion, he added, is more painful. He has a portocathetor, which is a device under his skin in his chest. This is connected to a needle which is attached to a syringe pump every Monday to infuse the drug continuously for five days. The pump, which Vikram wears on his waist, is about the size of an oversized palm-pilot and weighs a pound-and-a-half. It buzzes every time it pushes the medicine.
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