To protect you an' defend you
From cruelty, apathy, and wrong,
Someone's there to open each and every door,
I knocked loudly at each door
When it's time someone will open the door
Hard times, hard times, come again no more.
I have been through nightmares before
The universe always responded when I needed help,
Leading up to the right door
*Help Payel Bhattacharya Survive - VHL - Genetic Multi System Disorder* I am raising funds for one of my known Ms. Payel Bhattacharya who is 40 yrs old and is a patient of VHL ( von Hippel- Lindau which is a genetic multisystem disorder that causes tumors which become Cancer and can affect upto 10 parts of the body including Brain, Spine , ear , Nose , Liver & Kidneys. In Past 10 yrs Payel has had multiple surgeries as a treatment of this disease. Payel is dependent on her 70 yrs Old Mother and the only sour... *Read more* - https://www.ketto.org/fundraiser/help-payel-bhattacharya-survive-vhl-genetic-multi-system-disorder?utm_medium=whatsappShare&utm_content=591c26016cc4938389a1211b06c17a44&shby=1&utm_source=internal&utm_campaign=help-payel-bhattacharya-survive-vhl-genetic-multi-system-disorder *Donate Now to help Nishant Arora* - https://www.ketto.org/fundraiser/help-payel-bhattacharya-survive-vhl-genetic-multi-system-disorder?utm_medium=whatsappShare&utm_content=591c26016cc4938389a1211b06c17a44&shby=1&utm_source=internal&utm_campaign=help-payel-bhattacharya-survive-vhl-genetic-multi-system-disorder
https://www.ketto.org/fundraiser/help-payel-bhattacharya-survive-vhl-genetic-multi-system-disorder
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.
In my case, blood-filled tumors form in up to 10 organs of the body.
The only treatment is the removal of tumors, irradiation, and monitoring but unfortunately, multiple tumors formed in the liver which compressed and displaced vital vessels and I had a liver transplant leading to turning off of the immune system.
I had a liver transplant owing to several tumors in the liver which could not be taken out individually causing excruciating pain due to frequent hemorrhages in 2008. The largest lesion caused splaying of the portal vein around the lesion. Hepatic veins were compressed and displaced by the segment 4&8 mass lesion.
Certain medications are nothing short of miracles for the patients who need them. Medications such as anti-rejection drugs, chemotherapy, and corticosteroids are life-saving for many patients, but like many treatments, these pharmaceutical marvels come with side effects. And at least one of these side effects requires some potentially significant lifestyle adjustments.
The side effect in question? These medications may increase your risk of infection.
In other words, the drugs like sirolimus, predisolne, Cyclosporine, Mycophenolic or tacrolimus jeopardize your immune system. They are immunosuppressant drugs. The medication has the potential to interfere with the processes in the body that prevent infection and this interference is what allows the medication to work.
This almost implies that if you are taking some of these medications you will fall ill every time you pass by someone with the sniffles along with the big stuff, like the flu or tuberculosis or end up with Covid.
Yes, I was diagnosed with tuberculosis which was later found to be Multi-drug-resistant Tuberculosis.
After 15 surgeries including kidney cancer apart from the above mentioned Liver transplant and infections like MDR TB including pulmonary,lymph and bone.
I'm a goose,
With an irksome noose,
Round my neck,
Zinging the tatty track
With a woosh,
Volubly yet I say,
Wondrous abbreviated time,
Acrid stress,
The drag race,
‘live forever or die in the attempt’... says my selfish gene.”
This is what I wrote before my first cyber knife after my father's death. Worrying about my brain tumor he eventually got a heart attack which killed him. Could he have imagined I will face the same situation over and over again?
I was diagnosed with leptomeningeal hemangioblastomas after the cyber knife.
Between 1902 and 2013, approximately 132 cases have been recorded.
Detecting and treating the condition of leptomeningeal hemangioblastoma without delay seems to help survival, though the number of patients analysed is small. The most common cause of death is respiratory failure due to pontomedullary or cervical cord compression.
After 2017 I also have a chronic ischemic brain. Cerebral ischemia or brain ischemia, and when there isn’t enough blood flow to the brain leading to limited oxygen supply it may lead to the death of brain tissue, or ischemic stroke.
The electrons can be made to strike a tungsten target within the head of the accelerator to create a beam of photons (or “X-rays”). These X-ray beams are then directed at the site of cancer. Photons have no charge or mass and can be regarded as small packets of energy. Photons deposit their energy along the entire path that they travel through the body. Therefore, a beam of X-rays irradiates not only the area of the tumour but also the healthy tissue that the beam encounters on its way towards the tumour and beyond the tumour. X-rays used for treating cancer usually do not stop within the body. X-rays travel right through you. On the other hand, proton beam therapy is delivered by larger, much more expensive accelerators called cyclotrons and synchrotrons.
A proton beam directed at a tumour travels in a straight trajectory towards its target, gives off most of its energy at a defined depth called the Bragg peak, and then stops. While X-rays often deposit more energy within the healthy tissues of the body than within the tumour.
Not to worsen the condition further, I sought the help of Dr Jalali
I have no income. I write for Times of India digital without honorarium and my mother who is a pensioner draws barely enough pension to feed and clothe us, leave alone pay for my medical expenses. Friends donate who think I should live more and write more.
Currently I am suffering from a serious multiple brain tumors which has been reported globally from 1902-2013 only 132 cases and I am the first one in India. The small tumors floating around in the fluid used for cushioning the brain and spine tend to compress all the nerves that come their way. Hence the first nerve to be compressed was the optico-hypothalamic nerve which made me blind with right eye even after radiation therapy.
The next time it became bilateral trigeminal nerve. I got a cyberknife on 17/3/2020 but the left nerve is not done, hence it feels like someone is holding a bare electric cable against my cheeks or any part of the face.
After this cyberknife I got a swallowing problem. The cranial nerves associated with the swallowing process are the trigeminal (V), facial (VII), glossopharyngeal (IX), vagus (X), accessory (XI) - usually not considered - and hypoglossal (XII).
It should be emphasized that the structures involved in the swallowing process are pairs, both anatomically and/or functionally, due to the dual-side innervation.
Anatomically unique, the tongue, palate, pharynx, and larynx are functional pairs, each side having independent innervation.
The mutation of the gene is confirmed in an AIIMS research.
There were multiple cysts in pancreas already. They blocked the exocrine functions ( enzymes) and for a couple of months I had to run to the bathroom after every meal. After Creon SD microgranules were prescribed my diarrhea feels better but you can confirm it is around Rs 3000 and lasts for only 3 days.
Currently I can't stand for long, gait problems and electricity flows through the right leg. Also my bladder and bowel control is lost. All these can be to some extent treated with proton therapy and chemotherapy.
Mum at 68 years developed mild Covid because ofcollecting the deliveries of medicines or food kept in the bag hanging on the door. Perhaps some delivery men might be Covid positive and she collected stuff after an hour but aSARS-CoV-2 remained viable in aerosols throughout the duration of in experiments (3 hours), with a reduction in infectious titer from 103.5 to 102.7 TCID50 per litre of air. This reduction was similar to that observed with SARS-CoV-1, from 104.3 to 103.5 TCID50 per millilitre.
Because from 18/3/2020 we are under voluntary isolation and just Mum collects the deliveries hanging on the bag outside the door after the person has gone for over an hour.
CT count or cyclic threshold is inversely proportional to the viral load..more than 30 considered very low infectivity..less than 20 high infectivity..20 - 30 moderate infection.
Said Dr. Ishita B Sen
Nuclear Medicine
Director & Head
Dr. Ishita B Sen is a Nuclear Medicine Physician She also treats Covid. Hence Ma had moderate Covid 19 and has fully recovered despite her age.
Because of an unfortunate event I developed Covid 19
Doctors have also strongly suggested that solely relying on testing as a safeguard can make people 'lax' and take other safety measures, such as mask-wearing and social distancing lightly, which could be the two biggest factors which can spike up infections. Remember, the tests are a preventive measure and only effective, as long as you put in place other security measures.
Even though RT-PCR is the gold standard, we have known from Day 1 that there’s a 30 percent chance of it to be inaccurate. Moreover, when the testing kits are developed, the scientists pick up those parts of virus which are least prone to mutate, therefore this could be a reason behind the false-negatives.
The second reason for this could be that the viral load in your body is so less that its not getting detected in the RT-PCR test, as per experts.
The sample collection, transportation as well as the overburden of the cases, wherein the labs are not able to complete the analysis of the sample, plays a major role in the quality of tests, Dr Mahajan explained.
Next, repeat your RT-PCR test in 2-3 days, and take advise of your doctor to get a CT scan, says Dr Ray.
Blood tests at times are a good marker of inflammation and they can also give you and your doctor an idea of what is going on in your body, in particular, the C-reactive protein and the D dimer. Both of them are said to be a good testing ground for understanding what is happening in your body.
D dimer and CRP but no antibody. Antigen couldn't be tested because it might hurt my throat. Bilateral trigeminal nerve, vagus, Hypoglossal, Glossopharyngeal, facial, auditory are all compressed by tumours.
The RT-PCR test was not done in my case because I have Trouble swallowing food and medicines, Here I'd like to state The cranial nerves associated with the swallowing process are the trigeminal (V), facial (VII), glossopharyngeal (IX), vagus (X), accessory (XI) - usually not considered - and hypoglossal (XII).
Both Naso and Oropharyngeal samples collected. If have problem in nasopharyngeal then it can be done in Oropharyngeal sample only But Consult with your clinician first
Ur antibody level is low..which can occur
1.early in disease
2.low viraemia
3.immunocompromised state"
Said Dr. Ishita B Sen
Currently my oxygen levels dropped and an NGO( Jeevan Stambh Foundation) loaned me an oxygen concentrator. God bless them 🙏
Doctors asked me to get the
C reactive protein 400
D-Dimer 1050
Liver and Kidney Panel 1500
Once again.
My sources of survival were taken
Sorrow, grief never awaken
In loneliness poverty solitude
When darkness intrude
My mantra made hope everyday renewed
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