Doctor and his team arrived after waiting for around 3 hours and I was shifted to the procedure room for kidney biopsy. I was asked to lie down on my abdomen and relax. They gave local anesthesia to make me insensitive towards the pain of the surgical procedure. Ultrasound imaging enabled the doctors to track the insertion and position of the biopsy needle as it went through the skin into the kidney (termed as ‘percutaneous kidney biopsy’). I could feel the pressure building up at my back and slowly getting released as the needle was removed. This way, the samples from my kidney were collected and sent to the pathology lab for testing. The site of biopsy was covered with the bandage and I was taken back to the short stay ward. Doctor visited the ward and informed about the success of the biopsy. He asked us to track the change in color of the urine from reddish to pale yellow for next few hours. As the effect of local anesthesia subsided after sometime, I felt extremely restless due to the severe back pain. I somehow managed to walk to the washroom at the end of the day despite of the severe discomfort. Ultrasound imaging was conducted at night to confirm about the absence of any undesired changes or bleeding at the site of biopsy. My mother was devoid of sleep as she sat beside me through the entire night. After getting discharged on the next day, we rushed to Jaslok hospital to submit the biopsy sample for electron microscopy (viz. technique used to diagnose the disease by studying the structure and organization of cells/tissues present in the sample at high resolution). The back pain was excruciating but we still managed to give the sample and complete the procedures.
I resumed back to work after resting for 2 days. After 3-4 days, we scheduled an appointment with the nephrologist with the help of my uncle (Anand Mama). Final reports of the biopsy were yet to be provided but he gave initial indications regarding my case based on the biopsy and my test reports. He hinted that it might be Alport Syndrome based on my medical history and prevalence since childhood. We were absolutely clueless about this condition which he explained to us very briefly. Alport syndrome is a rare genetic disorder that affects kidneys, ears and eyes and ultimately progresses into kidney failure, hearing loss and eye abnormalities. He also educated us about the strict dietary restrictions that needs to be followed to delay the progression of the disease. After the session with doctor, my mother boarded the bus and went back home. I discussed this with my maternal aunts- Neeta Mavshi and Geeta Mavshi (I shall call them ‘Mavshi’ henceforth) while travelling back to the hostel. I was also recollecting eye issues that I faced since 2015 and was trying to correlate them with this condition. After reaching to the hostel, I immediately started reading about Alport on the internet. I immediately joined 1-2 support groups on Facebook to know more about it. I could sense its criticality and severity as I started reading about it. I felt a storm coming my way and darkness gulping my dreams. There were numerous evidence put forth by patients on the support groups about the kidney failures in early 20s and 30s and associated difficulties faced in the daily routine. This made me actually trembling with anxiety and fear!
I rushed to a quiet corner of the hostel and broke down! I could not take it! There were numerous questions banging me - “Why me? What did I do? Why am I supposed to go through this? What will happen now?” – along with the feeling of extreme sadness, fear and rage. I could not hold myself and broke down and started weeping. Just when I was trying to normalize and console myself, my phone rang and I saw Geeta Mavshi’s name flashing on it.
Source of image: Google images (www.shutterstock.com)
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