• Manish Gore

Chapter 9. Hello Steroids!

My biopsy reports stated that I suffer from Focal Segmental Glomerulosclerosis (FSGS). Looks quite a complex name, right?! Let me simplify it for you. It is a serious condition that affects tiny units of our kidneys that filter out the waste from the blood, called ‘glomeruli.’ Due to FSGS, these tiny units are affected and eventually form a non-functional damaged tissue. More importantly, it is a progressive condition and we cannot control it. It progresses over the period of years and ultimately results into kidney failure. The most we can do is manage symptoms and work towards slowing the progression. There could be 3-4 causes of the disease. The cause is either idiopathic (viz. due to unknown reason), or as a result of another health condition (like diabetes, infection, etc.) or immune-mediated (wherein the immune system attacks and damage organs of the same person) or ultimately genetic (i.e. inherited from earlier generations). Soon after understanding this condition, doctor prescribed the medicines that are routinely given to such patients. And that is where my journey with steroids had begun! Doctor had prescribed steroids (dose as high as 80 mg per day), 2-3 tablets for controlling blood pressure (as it is crucial for kidney health), antibiotics (to fight with the infections) and vitamin supplements.

I was quite worried to take steroids after reading the experiences posted by patients on several support groups that I had joined on Facebook. But I had no choice! There is no first line treatment available for this condition apart from steroids. Doctor speculated that FSGS might have occurred due to the overactivity of immune system. As a result, I was administered with steroids to reduce the immune activity (called as ‘immunosuppressants’) as an effort to lessen the damage occurring to the kidneys. Most of the patients respond to steroids and the levels of proteins and RBCs in urine decrease eventually in their urine. I had started taking the medicines with the hope for body to respond and kidneys to get better. All of this was coupled with strict diet restrictions. Besides this, I was also doing my PhD research project simultaneously. I used to travel daily to do research experiments from Girgaon to Matunga. That time, I was intensely driven to do my work as I did not know what the future of my health would be. I could hardly sleep due to the anxiety related to my health condition. I used to wake up at 4 am and study or read related to my PhD work to divert my attention. After a busy day in the lab, I used to spend evening with my mother who was/is my companion in the difficult times.

The first month after starting the course of medicines went fine and without any noticeable side effect. Eventually, I started gaining a lot of weight, my face got puffed up/swollen and was full of pimples/spots that it was difficult for me to shave as it could bleed from anywhere. The first indication of the suppressed/reduced immunity was noticed when I had boils due to the infection on my back just 2 days before my friend’s wedding in the month of January 2017. I soon realized that its going to be a bumpy ride ahead, full of obstacles and suffering.

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