Payel Bhattacharya with her mother
Von Hippel Lindau (VHL) is a genetic defect that causes capillary growth to go out of control. While the tiniest blood vessels, or capillaries, usually branch out gracefully like trees, in VHL patients a little knot of extra capillaries forms a growth or tumor and in certain cases, it becomes cancer. VHL can affect up to ten parts of the body, including the brain, spine, ears, eyes, lung, liver, pancreas, and kidneys.
I have been living with VHL for some time. After several misdiagnosis and diagnostic dilemmas ten years ago I was diagnosed with VHL--- a very rare, ferocious disease, hardly known in India--- during my liver transplant. I can still recall the faces of the radiologists checking my tumor- studded liver with their probes and wrote “VHL” on my file.
Yes, the liver transplant was a life and death affair because the tumors hemorrhaged and were extremely painful but they couldn’t be individually resected. We had no money to get the liver transplant done which was a whopping Rs 30 lakhs! We reached out to the world and my liver transplant happened sort of automatically. I survived the surgery which went on for eighteen hours, conducted by a team of thirty doctors!
Ten years on, VHL remains the least-understood disease. Most people and the government have no idea of the singularly difficult experience of mine to survive the disease. Even before this liver transplant, I had multiple surgeries but doctors were always in a dilemma about the diagnosis. It was during my brain tumor surgery that the neurosurgeon first suggested VHL, but back then according to him VHL was rare; hardly any case was found in India, and my parents didn’t have any symptoms. So, he found it difficult to reach a conclusive diagnosis. Liver transplant helped the diagnosis because it was then that doctors put their heads together to reach a final diagnosis.
After the liver transplant, my father died within a few months, leaving me penniless and without a roof above my head. It was then that my real tough times began. The transplanted liver needs the immune system to be suppressed so that it isn’t rejected like bacteria and viruses. After the liver transplant, you need to be on immuno-suppressants, which are expensive life-saving medicines.
VHL and an organ transplant both require constant attention and a strict radiological and lab testing schedule to identify new tumors or those that have re-grown. Besides, you need to constantly check if the transplanted organ is working perfectly. VHL requires surgeries or treatment for symptomatic relief of tumors, benign or malignant. Regular monitoring by a doctor is required to control the plethora of illness that an organ transplant and VHL affliction bring. We-- I and my mother -- were at a loss as to how would we manage.
We started thinking about how we would get money for my treatment when it was uncertain that whether we would get the next day’s meal? We didn’t cry, we reached out to the world. Help came from unexpected quarters and we have survived. We still need help as VHL spreads in more parts of my body, and brings with it many other ailments. I need loads of pills to survive. Sometimes the funds are difficult to come by, but we never lose hope, its hope that propels us.
I’m also an MDR-TB survivor (which I got under immune-compromised conditions), a kidney cancer survivor, which is but another manifestation of VHL. As surgeries piled upon surgeries, I have stopped counting. I wrote poetry and made sketches to express how we are combating the dire situation. I wrote my first long poem, “Warrior Princess”, which sowed seeds to an autobiography of the same name.
After several radiation therapies and treatments for a very rare kind of brain tumor, when my brain fog lifted, despite the fact that a brain tumor claimed most of the vision of my right eye, I penned down my story, my experiences with a bizarre disease, and how I fought the vagaries of fate.
Ten years ago I never thought I’d live to see this day. A doctor wrote in his prescription that I wouldn’t live beyond six weeks. But I have always pulled through, defeating the doctor’s bleak prognosis. Life is granted once and I celebrate life every day! I have an intense will to survive –and this strong willpower and a positive attitude have kept me afloat. August 8 will mark a decade of I living with VHL. I want to celebrate this day as “Survival Day”.