Payel
Bhattacharya,
39, has been battling with Von Hippel Lindau (VHL), a rare medical condition
where blood vessels form knots and develop tumours, some benign and some cancerous.
She went under the knife so many times that she has now lost count. Not
surprisingly her autobiography is called The Warrior
Princess. Her Story:
I was born a hale and hearty infant but life changed
when I was three. My mother was attending my younger brother, a new-born baby, and
I was dancing in merriment. Suddenly, a twirl made my left foot swell up like a
freshly-baked bread. My father went from doctor to doctor for the right
diagnosis but they all differed in opinions. One of them diagnosed me with a
hairline fracture and put me on plenty of antibiotics and auto-vaccines. Pumped
with heavy medicines at a young age made me resistant to antibiotics later.
Another doctor suggested cosmetic surgery which would
imply opening up both, my swollen left foot and the right foot, to compare the
two. I was practically a guinea pig. Meanwhile, tumours appeared in different
parts of my body. At 12, I was detected with benign brain tumours. The doctors
let it be for some years until they started troubling me again after I passed
class XII.
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I fainted while writing one of my medical entrance
test exams in 1999. We travelled across the country to hospitals in Kolkata,
Vellore and Chennai and finally came back to Kolkata and got operated in a
nursing home. The doctors were apprehensive that my condition could send me
into a coma.
In the next four months, tumours appeared in my liver,
causing me, causing me extreme abdominal pain. Experts said these were hemorrhaged
growths and could not be resected individually. Ten years ago, I underwent a
transplantto get rid of my tumour-studded
liver. And that’s when, after a series of misdiagnosis and diagnostic dilemmas,
doctors in Sir Gangaram Hospital, New Delhi (now, they have shifted their
institution to Medanta, Gurgaon and most of my treatment goes on there)
diagnosed me with a very rare disease called Von Hippel Lindau (VHL).
Back then, the term VHL was alien to most doctors. I
can still recall the faces of the radiologists checking my tumour-ridden liver
with their probes and looking at my file with a weird term ‘VHL’ with deadpan
faces, regarding me quizzically.
Named after German ophthalmologist Eugen von Hippel and Arvid Vilhelm Lindau, a Swedish pathologist and bacteriologist, VHL or 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 knots of
extra capillaries form tumours. In
certain cases, these growths turn malignant, causing cancer. VHL can affect up
to ten parts of the body, including the brain, spine, ears, eyes, lung, liver,
pancreas, and kidneys. Wikipedia says it affects 1 in 36,000 people but there
is no proper record-keeping in India. My world came apart, when I realised the
nature of my disease but I have resolved that there is no other way except fighting
till the end.
My liver transplant had drained me and my family both
emotionally and financially. It was an 18-hour long surgery with a team of 30
doctors that cost us Rs 30 lakh. We had no money for the surgery. Help came in
from different quarters. People donated money and my transplant just happened
automagically!
Soon after the transplant, my father died of heart
failure. And that marked the beginning of the most difficult phase of my life,
leaving me penniless and almost homeless. The transplanted liver needs the
immune system to be suppressed so that it isn’t rejected by the body. The
immuno-suppressants are expensive life-saving medicines, and also make the user
susceptible to other diseases. I too contracted multi-drug resistant tuberculosis
(MDR -TB). The moment my landlord came to know that I had TB, he wanted me out
of the house.
Forget about the treatment, we were not even sure if we
would get our next meal. But we have kept faith. We would live, we are meant to
live — this was our mantra. Help came from unexpected quarters and we survived
the worst.
My mother and I have since shifted to Delhi and
changed several homes (seven to be precise). The only earning member in my
family is my brother, who is a freelance cinematographer in Mumbai. His income
is not enough for my treatment and basic necessities. We still need help and
are not afraid of asking for it. My disease requires constant monitoring; I
need loads of pills; and money is difficult to come by. But we haven’t lost hope;
that keeps us going.
I am also a kidney cancer survivor, yet another
manifestation of VHL. On the last count, I had had 14 surgeries; I have now stopped
keeping the count. I’d rather use my time productively. I read voraciously,
write poetry and make sketches to express myself. I wrote my first long poem Warrior Princess which was later shaped
into my autobiography The Warrior
Princess, which was published earlier thisyear. It wasn’t easy to write as my brain tumor has claimed most
of the vision of my right eye.
I also reached out to several NGOs but was turned down
on the grounds that ‘VHL is a very rare disease’. Some didn’t bother to reply. Battling
apathy, ignorance and stigma has turned out to be more difficult than fighting
VHL. I reach out to people through social media and people with their heart in
the right place have come out to help.
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.
I met with such deadlines a few more times but I pulled through. I have an
intense will to survive, which is why I want to celebrate the past 10 years and
mark the tenth anniversary of my liver transplant as ‘Survival Day’.
(You may contact me at payel.bh@gmail.com / 9711197537 or https://www.facebook.com/payel.bh. Every drop makes an ocean)
