A test of inner strength awaits as the pressure builds upon the nerves and various problems build-up which may exhaust my energy with the approach of the winter months and a certain bored feeling sets in let alone the loneliness.
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. I had two episodes of bleeding and in the last one asked the doctor to get euthanasia done. Bleeding in the hemangioblastomas required hospitalization and was excruciatingly painful.
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, drugs like sirolimus, prednisolone, Cyclosporine, Mycophenolic, or tacrolimus jeopardize your immune system. They are immunosuppressant drugs.
Sounds alarming, but what does it even mean?
What does it mean if a drug is an immunosuppressant? I have come across people who have confused it with immunotherapy.
Whereas Immunotherapy is a type of cancer treatment that boosts the body’s natural defenses to fight cancer. It uses substances made by the body or in a laboratory to improve how your immune system works to find and destroy cancer cells.
It means 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.
How and why this happens depends on the particular drug. In general, however, the medication causes all or part of your immune system to “turn off” so that your body doesn’t go into attack mode, waging war against whatever it sees as a foreign invader.
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. Are you going to need to live in a bubble from here on out?
What are the side effects of immunosuppressants?
Fortunately, in most cases, an actual bubble won’t be necessary. Unless there's a pandemic going on and you are ill-fated that the army to protect you is disarmed. However, it is extremely important to understand the outcomes of living with a compromised immune system so you can protect yourself.
Side effects of immunosuppressant medications may include gastrointestinal problems like diarrhea, nausea, and vomiting. However, the most serious side effect of taking an immunosuppressant is the risk of infection.
That could mean catching every single bug your family member brings home from work or the very real possibility that a flu diagnosis will land you in the hospital. You are also more likely to experience complications from foodborne illnesses, bug bites, and environmental hazards (like mold). Oh, and you know all of those recent H1N1 outbreaks? You could be always at risk. Immunosuppressants also leave you at risk for very rare and difficult-to-treat infections, molds fungal pneumonia, and certain types of lymphoma.
Being diligent about basic hygiene procedures such as hand-washing is the only way out.
Everyone knows that hand-washing is the best thing you can do to avoid getting sick, but it is even more important for those who are immune-compromised and anyone who comes into contact with them.
Make sure to wash fruits and vegetables.
Avoid people who have active infections (don’t be shy about telling people to keep their distance, either).
You may need to wear a mask
at times (if you are on an airplane and people are coughing, for example), and it is also wise to avoid large crowds.
Staying up-to-date on all of your vaccinations is extremely important.
Adopt healthy lifestyle practices (get plenty of sleep, exercise, and eat a healthy diet).
If you think you might be sick or show any signs of infection, call your doctor immediately. The wait-and-see plan that applies to so many other people does not apply to the immunocompromised population. This is especially true with fevers.
If there is a high fever, they need to run to the emergency room so they can see a healthcare provider but I got a mysterious fever when I got to the emergency room of Medanta the medicity at 2 am in the morning because I was getting tetany and needed calcium drip.
Soon after discharge from the hospital after liver transplant, I got viral infection varicella and was treated with Zovirax...my experience of first viral infection.
It was my plight when I was diagnosed with an RCC H1N1 that was raging in Delhi and I had to commute to different hospitals because Medanta doctors wanted to do a needle biopsy before taking the tumor out. I would have gotten seeding that way and metastasis in the process would eventually have occurred. I traveled to different hospitals and got a cuckoo fever which wouldn't go. I couldn't get my blood tested for H1N1 and the clock was ticking because my RCC was 2.8 cms just a little below the threshold. The surgery was confirmed with Dr. Gogoi at FMRI but still, he said he can't perform surgery with an infection in the body.
By Divine will I thought of calling Dr. Randeep Guleria, he gave me some medicine over the phone and green cough syrup and I believe it's his experiences and expertise that I recovered and became ready for the surgery.
I always wore a mask when I went out. I carried and still did till before the lockdown a hand sanitizer in my handbag. You can never take enough precautions.
During the winter months, my brother came to spend time with us. He has a sinus problem and gets a cough and cold because of the weather change the whole winter, I had no sleep spending time coughing away.
The ultimate example of the risk of infection is getting MDR-Tb. I was losing more weight than the exercises I was doing and the food I was taking. I never had outside food but still, the doctors didn't think of that. Two years after the liver transplant I had a bewildering high fever which puzzled the doctors. After three months of continuous fever with a swollen lymph node made the physicians think. The lymph nodes biopsy showed TB infection(AFB+). More than 4 months of being on anti-Tb-treatment showed lung condition worsening. HAIN test confirmed that the bacteria is resistant to Rifampicin, Isoniazid and ethambutol hence a change was implemented but it didn't work and I stopped walking due to immense pain pelvis onwards. Head and Neck surgeon, Dr. Handa removed the TB bacteria-infected lymph node, did surgery of lymphadenopathy.
Dr.Randeep Guleria of AIIMS changed the medicines to 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 and I can't climb stairs.
All the time I use tissues, to wipe my face, eyes, nose because I was advised not to use a handkerchief as if you fold it in and use the other side the infection will be back and I don't have the power to fight them. My faithful troops
have been disarmed or perhaps just turned off. I always wash my hands properly but in the freezing winters or when outside use hand sanitizer to control my infections.
I have the rarest brain tumors... Between 1902 and 2013, approximately 132 cases were reported. Few studies have reported leptomeningeal involvement in sporadic HB or in HB associated with von HippelLindau syndrome.
Because no case of de novo development of disseminated HB without previous surgery has been reported, it is strongly suggested that the spillage and spread of tumor cells through the CSF space may be an origin of hemangioblastomatosis in patients with a genetic predisposition to the condition, Care should be taken to avoid tumor cell spillage during surgery.
When another mass was illegally cultivated on top of the kidney, a Ga-DOTANOC PET-CT based SSTR imaging because VHL syndrome associated hemangioblastomas frequently express SSTR confirmed that the floating lights in the patient's brain are hemangioblastomas. With this, the true nature could be seen and the diagnosis was confirmed.
A biopsy isn't required for diagnosis as it may cause meningitis and blood loss thereby cell spillage.
A fellow remarked after he saw the picture of the scan of my brain tumors
" you have more tumors in the brain than people have lice in hair.''
There is no data on the competence of the surgeons and equipment used in the initial CNS surgery so trying to determine if cell spread was caused by any incompetence during my brain surgery (craniotomy) in 2006 would be extremely difficult if not impossible to prove beyond a reasonable doubt. The fact that the physiology of each tumor is different and the number of cases is so small means that an accurate comparison of surgeons is impossible.
I get stereotactic radio-surgery before the growing tumors start putting pressure on the brain and become symptomatic. I have lost vision of my right eye for not being able to avail radiation therapy at the right time because of financial reasons and also because I was diagnosed with an RCC ( kidney cancer) at the same time.
Trigeminal neuralgia (TN), also known as tic douloureux, is a disorder of the fifth cranial nerve (trigeminal nerve). It is characterized by attacks of intense, stabbing pain affecting the mouth, cheek, nose, and other areas on one side of the face. Sometimes there's a constant dull aching or burning pain. Both types of pain can occur in the same individual, even at the same time. In some cases, the pain can be excruciating and disabling. If untreated, TN can have a profound effect on a person’s quality of life. In most cases, TN develops due to a blood vessel pressing against the trigeminal nerve, but sometimes no underlying cause can be identified (idiopathic). It can also be idiopathic, due to compression of the trigeminal nerve, or can occur due to a known underlying cause such as a tumor or multiple sclerosis. TN can usually be managed through medications, surgery or injections, or stereotactic radiosurgery.
Despite the striking strength of this pain, TGN isn’t particularly well known. Most people never hear of it until they or a relative develop it.
Sometimes the pain comes out of nowhere with no trigger at all. While a classic attack is sudden and sharp and then gone altogether, sometimes a low-grade ache or burning pain will persist in its wake for an hour or more. In some patients, the constant aching, burning pain is their initial complaint.
It was a warm October morning and I was in a merry mood having a good time because of the approaching Durga Pujas. I always try to make the most of the time with my mother. The season is very inviting and makes us happy and less anxious. I sat down with a book determined to enjoy it thoroughly but suddenly out of the blue something zapped across my right eye. The jolt of lightning appeared repeatedly. It lasted for a few seconds to a few minutes but it was difficult to keep my right eye open. This continued for the next few days but the pain was gone as abruptly as it appeared. I went to the neuro-ophthalmologist thinking about my optic nerve tumor but he said the optic nerve doesn't cause pain and it looks like trigeminal neuralgia and I should visit my neurologist immediately. He did his examination and said it was TGN and asked for an MRI. I underwent an MRI scan the next day and it confirmed the diagnosis of trigeminal neuralgia...“ Thin vascular loop of the superior cerebellar artery (SCA) abutting cranial aspect of the right trigeminal nerve at the root entry zone is noted.”
If you experience these cataclysmic episodes, your life will change forever.
Branches of Trigeminal nerve
The mandibular branch( bottom) of the trigeminal nerve serves the
the lower jaw, including the lower teeth, lower lip, side and front of the tongue, lower gums.
part of the ear.
The middle or maxillary branch serves the
the upper jaw, upper teeth, and gums, upper lip,
cheeks
palate
sinuses
temples, and most of the nose.
The upper or ophthalmic branch serves
the forehead, eyes
bridge of the nose.
There can be some overlap, especially in the eye itself.
It is also known as"suicide disease” as a result of those who killed themselves to escape the pain.
I had a subtotal thyroidectomy from which emerged HypoPara.
Hypoparathyroidism is a rare endocrine condition in which insufficient or inactive levels of parathyroid hormone (PTH) are produced by the four tiny parathyroid glands in your neck.
It may be due to a congenital, genetic, or autoimmune disorder that affects the function of the parathyroid glands or, more commonly, it may occur as the temporary or permanent result of surgery to the neck where there is removal or damage to the glands.
Insufficient PTH leads to low calcium levels in the blood, or hypocalcaemia. It causes electrolyte imbalance and can be a life-threatening condition if untreated.
Why is calcium so important? Calcium is vital to life and affects every cell in the body. Most people know about teeth and nails in connection with calcium but its effects are on the whole body - nerves, muscles, and organs. It helps blood to clot and is important in energy production. Calcium is crucial to us which is why the body has special mechanisms like the parathyroid glands to keep calcium levels constant.
Treatment with vitamin D analogs and calcium supplements is not ideal and can lead to long term renal problems. Calcium levels fluctuate but home calcium testers are not available so monitoring this condition can be challenging. Until 2015, Hypopara was the only endocrine condition without its own replacement hormone. Injectable parathyroid hormone is now licensed for use in the treatment of hypopara in the USA but is not yet available elsewhere.
Recent problems are swallowing and tackling. I have lost weight up to 10 kgs and if I am forced to talk I get pain in my larynx area and my voice changes.
Everywhere there is a glimmer of hope. Hand-holding fantasies are not there in my life, rather everyone would like to swat me out of the way. Sometimes I feel the need for someone, not to take away or bear my pain but just to support and care about me. From my childhood journey to middle-age, I became a warrior but nobody stood by me. Life was much different for me, when I needed support from everyone, I rarely got support from anyone. Thanks to the internet and social media when I need support few people don't turn their faces. The rest peacefully ignore the agony of others. It includes friends, family, school teachers, everyone.
There's always a glimmer of hope. There is cancer, depression but everyone can get out of it. The glory and brightness of life! When you arise in the morning, think of what a precious privilege it is to be alive to breathe, to think, to enjoy being alive so please don't keep wringing your hands.
My mother is a different being altogether. Granny tranny used to make her do heavy chores when she was pregnant and she lost her first child due to the heavy work she was coerced to do. She worked too hard to bring me into the world. She cares for me
" I feel that living with multiple rare diseases with an overwhelming battle is my plight of my child, the journey with rare disorders. I believe perhaps surviving those ill-fated surgeries where the doctor gave a deadline or said " Everything is in God's hands" because she has a greater purpose in life. For that, to live this debilitating life more than it has been predicted. We need support from everyone, it's true we rarely get support. To stay true to our goals in life, we need true, honest, support."
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