I have lived with sickle cell Thalassemia for 38 years today.
I am Sandhya.
My parents were told that I had Sickle cell Thalassemia when I was three years old. Sickle cell Thalassemia is another brand of Sickle cell disease. I had been sick and became jaundiced. At the University Teaching Hospital in Lusaka, Zambia; my parents were told by doctor Vernu, that their daughter had a hereditary disease that had no cure but could be managed.
My parents were told what to expect and how to take care of me. And so I have lived with the realisation that I was different or as my parents always tell me, special.
For thirty four years, I lived with the pains and falling sick, going into crisis ever so often but fortunately without any blood transfusion. Until of course, I was told that I had avascular Necrosis of the hip bones and so needed hip replacement.
The hip pain started when I was sixteen years old. It had affected my health so much that I was bed ridden countless times.
In Zambia, it would cost me millions of Kwacha. This was in 2011. I mean this was the year the doctor insisted that I had to get an operation done. Or I wouldn’t be able to walk anymore. I was scared. As a teacher standing is my life. So I was scared. Very scared.
Lucky for me, my dad’s family in India made arrangements and on 2nd January, 2012 I was admitted to St. Johns Hospital in Bangalore, India.
I had been told that I needed a total of ten pints of blood for my operation. I would be having Bilateral Hip Replacement. So for the first operation five pints of blood were needed. I am Blood group A positive, so five pints of A positive blood. My whole family came on board. My cousins donated, any of my uncles who were able, donated.
I felt so grateful because the doctor, Dr. Raj Kumar Amravathi had said they wouldn’t operate if there wasn’t enough blood for me because I would lose blood during the operation.
The first operation was performed on 10th January, 2012. I was transfused for the first time in my life, before, during and after the operation. The second operation, I was told I would need another five pints, by then, my cousins had gone back to their homes. So my aunt Hilda lobbied her colleagues who very willingly donated blood for me.
I was operated on the right leg on 17th January, 2012.
I am alive today because strangers willingly donated blood for me that I needed so urgently. Without which my operation would never have taken place, my life would still be filled with pain.
I am grateful to people who donate blood, some of us wouldn’t be alive today without them.