Just when I was consoling myself after knowing about Alport Syndrome, I received a call from Geeta Mavshi. Even she had read about the syndrome and had realized its severity by then. What she spoke next really calmed me down! She had discussed this with Madhav kaka, her husband, and both of them asked whether I could shift to their house in Girgaon (Mumbai) for a few months along with my mother till the condition improves. Since the dietary instructions were quite strict, it was important to I avoid the food that I had in the hostel mess and instead have home-made meals cooked by my mom. It was finally decided that we shall shift and my mom and father made necessary preparations within a day. Geeta Mavshi got my mom along with her in car and picked me up at Matunga (Mumbai) and we left to Girgaon. She opened the wonderful home to us and we did basic cleaning and arranging of the belongings. Mavshi decided to leave back on the same afternoon. I still remember how tightly she had hugged me with immense love and affection while leaving the home! When I look at this incident after 4 years, I realize how much warmth and assurance she gave that nothing wrong will ever happen to me in life. And not just merely in words, but she and her family literally stood by me and supported me in the difficult times through their actions and decisions. Tears flow down from my eyes even now as I pen down these experiences. Hence, I truly call all of them i.e. my mother, Geeta Mavshi and family and Neeta Mavshi, as MY SAVIORS! They carefully and swiftly picked me up from the darkness where I was badly stuck and took me back into their secure and warm embrace. Their light of love sparked a ray of hope and positivity in my heart.
Within 2-3 days, we slowly got accustomed to the house and new schedule. I had started travelling to lab using intra-city transport buses. I must mention about the help that we received from Pradeep, who used to take care of the house at Girgaon. He is extremely hardworking, loyal and helped us immensely in adapting to the new routine. My mother fetched the best possible grocery stores, vegetable market, etc. and cooked delicious food for me each day. I was (am) supposed to eat food with less salt and less proteins as well as asked to avoid eating fruits and vegetables with high potassium. It was a tussle to keep everything in mind and cook accordingly. I had to sacrifice eating my favorite dal, banana, coconut water, and several other food items. Circumstances were tough to handle initially but became a routine when I accepted and moved on. I couldn’t eat anything outside and had to pack 2 sets of tiffin along with me, one for lunch and another as an evening snack. Girgaon is indeed a wonderful part of Mumbai and my mother was so delighted when she sat at Marine Drive for the first time. It was a new happy world of both of us, me and my mother. We frequently had calls with Neeta and Geeta Mavshi who used to track my health and ensure whether everything is going fine.
I was asked to do hearing test and a few eye tests to confirm whether the changes related to Alport syndrome had occurred in me. Luckily, I had no hearing loss and my eyes did not exhibit the changes that are widely reported in Alport patients, like lenticonus (viz. a condition in which there is a conical shaped bulge on our eye lenses and the underlying tissue). On the other hand, we received biopsy reports after a week or so. Both the reports indicated the diagnosis as ‘Focal Segmental Glomerulosclerosis (FSGS).’ Surprisingly, the report from Jaslok hospital had specifically mentioned about the absence of Alport Syndrome, which was quite confusing, too. Although it was a bit relieving to know that the biopsy reports didn’t mention about Alport, at the same time, we were concerned to know about the disease we had never heard of; FSGS!
Photographs: (1) Geeta Mavshi with us; (2) Geeta Mavshi and family; (3) Sisters: My mother, Neeta Mavshi and Geeta Mavshi