Since birth, all I can see is struggle. Even before I came to the planet. My mother is a different being altogether.
As she got pregnant, She was subjected to cruelty and ruthlessness by aunt and granny-tyranny. They used to make my mother do heavy jobs while she was carrying her first child and she had a miscarriage.
When I was in her womb she was again subjected to heavy jobs in the kitchen. Mother had developed certain problems with her pregnancy. She worked too hard to bring me into the earth. She cares for me like no one. She used to play with me and was my only playmate.
Currently everything inside me is out of order. My missing liver which has been stitched back with a replacement; my left kidney, part of which is gone forever; my brain which has been burnt by radiation beams. resulting in an ischemic brain and the tumours scattered inside sparkling like a star punched sky yet the "little grey cells" had worked out an exceptional detective book during lancinating pain with one-eyed vision and typing with the index finger of the right hand because after the had got palsy and was treated with high-dose steroids( omnacortil/Prednisolone ) by a doctor but the hand doesn't work like before and the left had after recovering from paralysis during the craniotomy didn't get back the sense of touch and both halves of brain lost coordination and refuse to work together. I can't explain the pain I had while writing with my one-eyed vision. With swelling in my eyes and eyes, which feel it like on fire with tears streaming down, but my passion for writing made me write 3 books.
The first book- The Adventures of Mum And Princess , an unique collection of detective stories.
I have also written a fictional account of my life story; The Warrior Dies Dancing, That's Who I Am, which is published in the Indian Literature journal of Sahitya Akademi in the September- October issue of 2018. In November 2018, I published my Survival story of the same name.
I also wrote a paranormal novel Midnight .I want people to read and know about my struggles, how I have faced the cruel situations in my life, and create awareness about VHL.
Also writing for Times of India digital spreading awareness, positivity and hope without honorarium…
The unusual birth of an eye-catching child of fond parents after a miscarriage and the following embryo getting problems while in the womb, were lost in the thought that behind the outer shell never thinking there might lurk some sickness never known to humanity and the ill-fated, ill-starred child would have to endure the worst in all walks of life and face countless challenges.
I was a precocious little girl. I started walking and speaking fluently at the age of nine months. The grim humour was a disease that was lurking inside with considerable firmness to follow me through each doom and see my reaction, that if I turn a victim or a warrior.
Symptoms started at the age of 3 Then ultimately I got a surgical resection at the age of 12.
The next surgery was within a year and two labs had disputes over the biopsy of the excised tissue and one was sure it's cancer the other held onto their views that it was benign.
One night worried Mum called the doctor crying over the phone but he assured her that at a tender age instead of chemotherapy or radiation he had totally scorched the area so that there can be no growth but my parents weren't like me, who could understand science, ask questions and being laymen they accepted the explanation. Yet, I knew my father held a fast for me for a month and after returning from the office he used to eat little.
I grew up suffering all the time from a variety of symptoms and fatal diseases.After several misdiagnoses and diagnostic dilemmas in 2008, I was diagnosed with a very rare disease hardly known in India, called VHL or von Hippel Lindau during my landmark liver transplant. I can still recall the faces of the radiologists checking my tumor-studded liver with their probes and looking at my file with a weird name “VHL” with vacant faces and regarding me quizzically. Yes, the liver transplant was a life and death affair and we had no money to get the liver transplant done which was a whopping> 30 lakhs!
For my liver transplant doctors and endocrinologist, you have been neglecting my problems for long. A rare genetic cancer patient has a valuable life and the right to live as much as the pandemic stricken ones.
My pancreatic cysts are causing problems and I can't sleep with stomach ache and bloating and diarrhea. Taking Creon symptoms are getting better. But my father paid the liver transplant surgeon and hepatologist after liver transplant my life time fees.
You are looting me now without listening to my problems disconnecting calls. The worst money hungry doctor. I have gone to the High Court for my serious condition of leptomeningeal hemangioblastoma in which the most popular cause of death is respiratory failure due to pontomedullary compression and cervical compression. Now these pancreatic problems have made my life hell.
We have problems as emails are not replied, calls are disconnected because I don't have money to pay.
This is abominable. I have the right to live according to article 21. You gotta attend my pancreatic problems. I am at Death's door and I have nothing to lose and I am fearless as always and angry. I have a chance of pheo para I told you but never has plasma metanephrine tested. I will never beg to attend my diseases but I will get my right for ignoring a rare genetic cancer patient.
Your Hipocratic oath has mutated.
I swear by the Ministry who makes the ultimate decision. There's no heath and all-heal incision without the crispy banknotes, by Lord God Kubera, Goddess Laxmi also that according to my ability and judgment, I will keep this oath and my profession- to reckon him who taught me this art to butter my bread, and not to share my knowledge with any sufferer never relieve his necessities unless the required sum determined by me is wholly paid. I will never look upon every patient of mine on the same footing as my brothers if only they are rich beyond measure and compensate for my toil. I will never remember to treat rare diseases with fatalities and cancerous growth because the sick human may affect the person's family's economic stability. I will not abstain from my voluntary act of mischief and ignoring their symptoms, will treat them with dissociative drugs dismissing the symptoms as untrue or psychological making them repellently fat-like, Mr. Pyecraft with my expert craft. With a serious obesity problem I will have more to deal with and riches will flow in . I will never answer all the questions so that they come to me over and over again and pay my hefty fee . If they wish to learn it without fee or qualification I can never let them know or impart my knowledge about their syndromes because a specialist knows the best and has the best brain.The special art of buttering the bread by the law of medicine as taught by my teachers no one should know. I will not follow every systematic plan to improve the quality of life of my every sufferer. I will concentrate on the quantity of life I can treat and make them spend more money for bread and butter. I will check the wallet of the rare disease patient then treat them not abstaining from whatever is deleterious and mischievous. If needed deadly medicines will be given along with counsel taking their written permission to avoid legal issues. I will not pass my life with purity and holiness that way I shall gain trifle. I will push patients with multiple problems to other practitioners so that we can earn together. Whatever patients I treat will not entirely benefit the sick but my own wallet. Whatever connection with my professional practice or not in connection with it, I see or hear life only in quantities. It will be my lucky stars when a disease starts exponentially increasing. I will let my phone ring for those small numbers. I shall put on hold all other activities and try to tackle them even if it is not my speciality. Nothing will matter to me as quality adjusted in life years but quality is quantifiable! While I continue to keep this oath unviolated, may it be granted to me to enjoy life and practice my remarkable art , admired and deeply respected by all men, in all times! The idea of taking the cost of a surgery/ medical procedure/ treatment by medicines after calculating not just how many years life it saves, but what the quality of the quantity of life is. But should I trespass and violate this revered oath may I turn impoverished.
Secure your own mask before helping others.
And i think of us, all the people, and the masks we wear, the masks we hide behind and the masks that reveal.
I imagine people pretending to be what they truly are, and discovering that other people are so much more and so much less than they imagined themselves to be or present themselves as. And then, I think about the need to help others, and how we mask ourselves to do it, and how unmasking makes us vulnerable...
We are all wearing masks. That is what makes us interesting. ~ Neil Gaiman
Indeed all of you are wearing masks. Sometimes to protect for good reason and sometimes just to hide the brute inside you. Some of your masks are black,some are white
Few diseases of the present have little in common with the diseases of the past because of their rarity but like an owl, unless I to pore over abstruse medical documents and make it your pastime with a great penchant for general science with an interest in medicine.
Indeed I studied Science and was a topper in English and Biology in my ICSE.
Few patients know better about their rare diseases than doctors
After completing their medical degrees do they plunge into the world of unique diseases, keep themselves updated, keep track of all those maladies?
After my father passed away Poonam Gupta, student of Dr AC Ammini got in touch with me for research purposes.
I got an email from AIIMS.
Hi
I am Poonam Gupta Registered PhD Student under Dr. M.L Khurana & Dr. A.C Ammini ( 9868397600) at AIIMS. I need only one Blood Sample of genetic Testing which will be done free of cost.
Then,
"Hi, Payel. I have found a mutation in VHL gene from the DNA extracted from your blood. We have to further confirm the mutation by a different process & it will take a month because the enzyme used for that analysis is not available in India & we have to order that from Sigma, USA. It will be great if you can send me the sample of your brother & mother then it will be very easy to confirm the mutation."
Next time
"You are suffering from VHL Syndrome that has been confirmed from your genetic testing of VHL gene.
You may need the following test to be done each year.
1. MRI Whole body
2.PET-Scan
3. Plasma/Urinary Metanephrines
4. routine analysis of blood chemistry
5. Regular chart of B.P"
I have a rare disease called VHL or Von-Hippel Lindau--this is a cancer-suppressing gene and those people who have VHL disease have a mutation, turning you into a tumor producing factory.
I don't think I have to explain mutation because the virus causing the pandemic is also composed of genetic material and it is mutating constantly.
In my case, blood-filled tumors form in up to 10 organs of the body.
It !
Vhl is a lifelong genetic condition characterized by blood vessel tumours in upto 10 areas of the body. These tumours can be benign or cancerous.
characterized by the formation of tumors and fluid-filled sacs (cysts) in many different parts of the body. Tumors may be either noncancerous or cancerous and most frequently appear during young adulthood, I got my first symptoms when I was 3 years old.however, the signs and symptoms of von Hippel-Lindau syndrome can occur throughout life.
Symptoms of von Hippel-Lindau (VHL) disease vary among patients and depend on the size and location of tumors.
Tumors called hemangioblastomas are characteristic of von Hippel-Lindau syndrome. These growths are made of newly formed blood vessels. Although they are typically noncancerous yet they can cause serious or life-threatening complications. Hemangioblastomas that develop in the brain and spinal cord can cause headaches, vomiting, weakness, and a loss of muscle coordination (ataxia). Hemangioblastomas can also occur in the light-sensitive tissue that lines the back of the eye (the retina). These tumors, which are also called retinal angiomas, may cause vision loss.
People with von Hippel-Lindau syndrome commonly develop cysts in the kidneys, pancreas, and genital tract. They are also at an increased risk of developing kidney cancer and pancreatic cancer called a pancreatic neuroendocrine tumor.
Von Hippel-Lindau syndrome is associated with a type of tumor called a pheochromocytoma, which most commonly occurs in the adrenal glands (small hormone-producing glands located on top of each kidney).
Pheochromocytomas affect the adrenal glands, which are small hormone-producing glands located on top of each kidney. These tumors often cause no symptoms, but in some cases they can produce an excess of hormones that cause dangerously high blood pressure.They are usually non cancerous. They may cause no symptoms, but in some cases they are associated with headaches, excess sweating, and the dangerously high blood pressure that may not respond to medication. Pheochromocytomas are particularly dangerous in times of stress or trauma, such as when undergoing surgery .
About 10 percent of people with von Hippel-Lindau syndrome develop endolymphatic sac tumors, which are noncancerous tumors in the inner ear. These growths can cause hearing loss in one or both ears, as well as ringing in the ears (tinnitus) and problems with balance. Without treatment, these tumors can cause sudden profound deafness.
Noncancerous tumors may also develop in the liver and lungs in people with von Hippel-Lindau syndrome. These tumors do not appear to cause any signs or symptoms.
Because of the potential morbidity associated with resection of multiple craniospinal haemangioblastomas in von Hippel-Lindau disease, stereotactic radiation therapy has been used instead. Small haemangioblastomas (<3 cm diameter), and those not associated with cysts might respond safely to radiation therapy.However, studies with longer assessment and more patients than those done so far, are needed to establish effectiveness and potential long-term effects of this treatment.
All people with VHL disease should be carefully followed by a physician or medical team familiar with the disorder.
The complexity of their existence, the trials of maladies forced me to struggle to live.
The will to live is an unstoppable thing. Most people live only when they are about to die.
VHL is a tumour suppressor protein that is localised in the nucleus or cytoplasm, the extent to which being dependent on cell density.
The hypoxia- inducible transcription factors have also been shown to play a crucial role in tumor promotion in other cancers including breast, brain, colon, gastric, lung, skin, ovarian, prostrate, renal, pancreatic. Increased levels of growth factors result in angiogenesis.
VHL is the key to know how tumours grow and how potential therapies can inhibit angiogenesis.
It may sound complicated, but having a VHL diagnosis shouldn’t consume a patient’s life. In fact, monitoring through routine screenings is one of the most important components of care for patients with the inherited condition, which puts them at an increased risk for developing tumors.
The will to live is an unstoppable thing. Most people live only when they are about to die.
I, who swam the seas with vigor, without any complaint, felt the warmth of sunshine in the emptiness of my life, from the quest for knowledge I got to know more about my diseases.
Valuable, vascularised, happening, hopeful, lifetime of learning and living with vHL or von-Hippel lindau
Even if it may reach the crescendo
Her life was surprisingly spooky
Wracked with an unheard ailment of tumor
She lives not just exists the spook humor
A lifelong genetic condition
Well, the ailment can't stop her aspirations
When extra vessels forming into tumors
If medical men tear out the tumor
She gets irradiated
Its later, never sooner
She will not be incapacitated
It shows that God has a sense of humor
And the light that shines like a sky littered with stars is not a star, it's just a tumor
In up to ten areas wracking the body
Instead of slow decay took a decision to study
With pain blythely bent
Reading ceaselessly extremely content,
She knows more about her diagnosed syndrome
Reading and writing comfortable at home
Musing I'm sick, it's been known for long
Happy Hypoxia
With stamina
Yet I am strong
With a genetic cancer
No one will drink my pain
Because from an impoverished they don't gain
I have the best answer
For my treatment
Which happens so frequent
https://milaap.org/fundraisers/support-payel-bhattacharya-1
No comments:
Post a Comment