To all Deus ex machina, every well-wisher, Doctor of mine, and largely to Mum.
World Health Organization says -"Each year, we commemorate World Tuberculosis (TB) Day on March 24 to raise public awareness about the devastating health, social and economic consequences of TB, and to step up efforts to end the global TB epidemic. The date marks the day in 1882 when Dr. Robert Koch announced that he had discovered the bacterium that causes TB, which opened the way towards diagnosing and curing this disease."
The necessity of immunosuppressants for solid organ transplantation.
The transplanted liver needs the immune system to be suppressed so that it isn’t rejected like any pathogen. Immunosuppressants are expensive life-saving medicines. I am on immunosuppressive medicines for life after a liver transplant.
The essence behind continuing an immunosuppressive regimen is that the transplanted organ into the body of the host is not similar in the genetic structure(DNA) of the recipient.
We have been endowed with a wonderfully complex structure called the immune system to protect us from viruses which are essentially nucleic acid DNA or RNA.
Hence, the immune system not having the capacity to distinguish between a new organ transplanted to save life destroys it instead which results in rejection.
Immunosuppressive treatment begins during the surgery and continues throughout the patient's life. Regular blood tests and other maintenance strategies by which medicines at specific doses are adjusted periodically by constant monitoring to prolong the transplant recipient's life and prevent acute or chronic rejections of the graft.
Steroids and anti-rejection medications target T-cells, which are lymphocytes that control the immune response. All immunosuppressants leave the patient more susceptible to infections and less able to fight them off.
Cyclosporine was my first immunosuppressant but I had a side-effect gingival hyperplasia and I looked like a gummy teeth Marvel villain and then I was put on Sirolimus. It worked wonderfully, keeping brain tumors at a minimum. Then again time came for an incisional hernia repair which led to debridement. Sirolimus has a side-effect of slow wound healing so I was put on tacrolimus and mycophenolate mofetil as an add-on.
When ultimately tacrolimus was changed to Sirolimus I found out in routine MRI I got 2 new brain tumors. But mycophenolate mofetil remained as an add-on since 2016.
The anti-rejection protocol generally is just a shot to your system to suppress everything.
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.
Yes, I was diagnosed with tuberculosis which was later found to be Multi-drug-resistant Tuberculosis.
My experience with infections
Soon after discharge I got viral infection varicella and was treated with Zovirax.
I am an MDR- TB survivor with pulmonary, lymph, and bone involvement.
Two years after liver transplant I had a high fever and a lymph node just at the angle of my right jaw used to be swollen. The fever wasn't abating with any antibiotics and I used to have partial seizures.
I got a biopsy of the lymph node which showed AFB+: Acid-fast bacillus (AFB) is a type of bacteria that causes tuberculosis.
TB is a serious bacterial infection that mainly affects the lungs. It can also affect other parts of the body, including the brain, spine, and kidneys. TB is spread from person to person through coughing or sneezing.
More than 4 months of being on anti-Tb-treatment showed lung condition worsening. HAIN test confirmed that the bacteria is resistant and I have MDR TB. MDR TB is a particular type of drug-resistant TB. It means that the TB bacteria that a person is infected with are resistant to two of the most important TB drugs, isoniazid (INH) and rifampicin (RMP). If bacteria are resistant to certain TB drugs this means that the drugs don’t work.
Cogito, ergo sum: I think, therefore I exist. I was only 3 years of age and my father took me to an eminent doctor who has written a chapter on orthopedic surgery which is taught in the UK. He used to jab and poke every angle of my body with his son-in-law. Perhaps he was looking for my pains and weaknesses while my father used to sit outside. Wounded, hurt, damaged I wouldn't utter a word when auto-vaccines were jabbed in my butt. I couldn't climb the stairs. I dragged myself up then into the bed. I was never fragile or vulnerable, nonplussed or hurt with a cool attitude, I always said there was no pain thinking, this way I might be able to avoid the doctor. It continued for four years when he told my father he has never been a failure but this was the first time. But his unfortunate treatment with cloxacillin made me resistant to plenty of antibiotics. All he had to do was diagnose a blood-filled tumor of von-Hippel Lindau.
This incident at a very tender age made me resistant to plenty of antibiotics.
After a few months of treatment including streptomycin injections, I got a surgical removal of lymphadenopathy which was still AFB+.
Then I was sent to Dr.Randeep Guleria at AIIMS who changed the medicines to the highest degree antibiotics and the expensive drugs cured MDR-Tb but till this day I need a walking stick to walk and can't do most of the daily jobs for which I have to depend on her 69 years old mother.
The fun ingredient of life is not only you get bombs in your lungs wherein you gotta lie low hoping they won't go off; they can be diffused by a squad with proper knowledge. Looking forth to sunshine so that the landmines (leptomeningeal hemangioblastomas) don't blow me off with an utter BOOM!
TB can be latent or active. If you have latent TB, you'll have TB bacteria in your body but won't feel sick and can't spread the disease to others. If you have active TB, you'll have symptoms of the disease and could spread the infection to others. I might have had latent TB, my middle uncle was close to me and I learned from Ma he had TB before my birth. Also, my thinking process says musing about my spleen: The spleen is part of your body’s lymphatic system. The lymphatic system helps remove cellular waste, maintain fluid balance, and make and activate infection-fighting white blood cells for the immune system. It’s also responsible for making substances that play an important role in inflammation and healing. It was noted down during my transplant " splenomegaly with free fluid" but at the same time of TB after my father's death, I realized that I had no report of the test result of the fluid!
Well, Dr. Guleria not only changed medicines but did regular whole-body CT, ultrasound of the neck, and chest X-rays for radiological conferences. He found that from old X-rays I might have latent TB which dated back to my adolescence days.
I reflected I probably had latent TB which flared up once I was put on immunosuppressants.
In 2013 two brain tumors were diagnosed in those routine CTs and a conference, it was confirmed no, TB hasn't spread to the brain. Unfortunately within 6 months, MRI revealed that I have got leptomeningeal hemangioblastomas.
Supratentorial HB is a rare and benign neoplasm. Very scarce literature is available regarding supratentorial HB. Supratentorial HB, which is quite rare, was first described by Bielschowsky in 1902.
They are most commonly found in the frontal lobe of the cerebrum followed by the parietal and temporal lobe. Mine was in the parietal lobe.
Embolization was necessary before the prior surgery else all will end up like me.
All patients who underwent primary surgery for HB of the CNS. The median interval from initial surgery on HB of the CNS to the identification of leptomeningeal dissemination was 96 months. I was diagnosed in 60months.
It is very rare approximately from 1902-2013 only 132 cases have been globally reported.
Prior to surgery of the initial tumor, planned embolization should be undertaken if possible to reduce blood loss. However, depending on the actual tumor structure embolization may be found not to be possible. Reducing blood loss may also help in reducing tumor cell spillage and spread. I recall correctly what happened in the OT as I came to and I previously established Brain and mind are not the same. Hippocampus, located in the brain's temporal lobe, is where episodic memories are formed and indexed for later access. Episodic memories are autobiographical memories from specific events in our lives. I recall the bleeding and the total paralysis of the left side.
In 2015 it destroyed my right optic nerve and I am partially blind even after killer sessions of radiation therapy. After 2017 radiation therapy of two growing tumors I got trigeminal neuralgia and 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 trigeminal nerve is also involved with the teeth and often sets in tooth pain so under the advice of my transplant hepatologist I visited the dentist under antibiotic coverage last year. But after returning I felt feverish and fever rose to 105 degrees and three lymph nodes in the neck stood out.
Such unforeseen infections haunted me throughout my life increasing the cost of health maintenance.
Detecting and treating the condition of leptomeningeal hemangioblastoma without delay seems to help survival, though the number of patients analyzed is small. Patients may have other underlying health issues that may affect the data.
Tumors affected lots of body parts like I can't swallow, headaches, uncontrolled menstruation, dizziness, fall at the lightest touch on my leg, my gait is also a problem. I banged myself on the bookshelf, bit my tongue while eating or speaking, pain behind the ear straight from the neck, triggered by chewing, coughing, yawning, talking, and swallowing, and sneezing. When vomit rises from my throat I feel life is drool-worthy.
I can't go for surgery or biopsy because these tumors are highly vascular and there would be more blood spillage with the risk of bacterial meningitis and thus proton beam therapy can save me. But
a Ga-DOTANOC PET-CT based SSTR imaging because VHL syndrome-associated hemangioblastomas frequently express SSTR confirmed that the floating lights in the brain are hemangioblastomas. With this, the true nature could be seen and the diagnosis was confirmed.
A proton beam directed at a tumor 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 tumor.
A beam of X-rays irradiates not only the area of the tumor but also the healthy tissue that the beam encounters on its way towards the tumor and beyond the tumor. 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.
My life is short but not void but blessed
I am trying to survive with my Mum throughout giving my best.
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