About five years ago, I started to feel that my hearing was deteriorating. I could fix it temporarily by popping my ears, but overall it felt like sounds would be muffled just a teeny bit enough for me to feel annoyed that I couldn’t hear as well as I used to. It wasn’t an issue when wearing headphones but real life speech was the biggest concern for me. I’d almost always miss words said at transitions into plosives. I’d got my ears checked at an ENT whose auditory test consisted of generating a frequency response plot of both my ears by playing tones. Doctor’s opinion was that it was at the top end of parameters, accounting for degradation for my age.

Around the same time, I had also gone into a neurologist, who’d performed EEG & MRI to determine if there was anything else at play to see if the wiring was wrong because the microphone was fine apparently. No issues there. These tests were suggested as I’d reported some subtle vision issues during the examination.

My sight is minimal (+0.5) so while the generic recommendation to use computer glasses was suggested, a problem that arose around the same time was difficulty in keeping my eyes focused on anything moving. I’d been intimated of a possible depth perception issue by a research assistant at UofR who was looking for volunteers for a 2008 era eye tracking research project as part of an HCI study, but I never thought much of it. I played cricket competitively for a few years after it and never felt like I couldn’t sight the ball during the subsequent 8 years. May be it was just good hand eye coordination built up over the years.

Eye health otherwise was clear so the doc suggested Vision Therapy. It was difficult to find any one willing to take on an adult during the pandemic as most pratices usually cater to pediatric patients. Finally found a spot at a Sports focused vision therapy practice run by a couple and over a period of 6 months using training aids and VR, they taught me exercises to be able to consciously control the eye movement enough to that I felt there focusing improve. Most of these were to separate the act of focusing between tracking and panning. VR especially helped as it could eliminate out the hand-eye coordination aspect of real world scenarios. I’d also resumed my motorcycling during this period, where these new techniques were being exercised without much thought, because the need for it was much higher.

Again, both of these perceptions of deteriorations, were ruled within parameters, but it bothered me enough to seek out help. I could function fine without any issues, pop my ears regularly, lip read if needed and be more conscious of the plane in which any object is at.

During these 5 years, 4 of my annual physicals were scheduled around the same time that I was sick/ recovering from being sick. Flu/bacterial/COVID - whatever was the cycle of the year. While the bloodwork was focused on my hypothyroidism, everything else was within range, apart from being slightly overweight. Urine though had microscopic blood, which the doc felt was either an active infection or evidence of the recovery from the recent illnesses. Twice the choice was to do a course of antibiotics and the subsequent follow up diagnostic work were clear.

This year’s physical though was done while in good health and the urine sample still showed Microscopic Hematuria. PCP scheduled an Urology consult going on a hunch of kidney stones. This meant an ultrasound of the kidney, which ended up being clear, followed by a Cystoscopy. A literal camera going up your urethra to check in the bladder for tumors. Vasectomy is a breeze compared to this abomination. Also clear. But at that consult as well as a subsequent follow-up, the microscopic hematuria persisted. Follow-up Kidney and liver function tests in the clear. Time for a nephrologist then, goes the PCP. I delayed going to this consult by about a month because this was feeling like a wild goose chase. All of this testing but I didn’t have any symptoms of renal disease other than trace blood in the urine.

Nephrologist had me go through another round of kidney and liver function tests, autoimmune markers, a contrast CT of the kidney as well as ureters to rule out stones completely and a gene panel focused on Renal disease, mainly to rule out autoimmune disorders.

This was done by Natera, whose stock wasn’t kind to my post COVID investment portfolio. 4 weeks later, today the nephrologist called with the gene panel results - a mutation affecting certain collagen chains that causes them to be “structurally less stable and more susceptible to biomechanical strain “. These mutated chains are usually exclusive to the kidneys, eyes and inner ears. Hello Alport Syndrome - symptoms - hematuria, vision impediments and abnormal conduction of sound waves via electrical signals to the brain.

While the gene panel confirms it, apparently is not FDA approved yet so a kidney biopsy is next. Mostly a mild case given the other findings, but it still needs to be done to chart out the course. I’m relieved to just say to myself that I wasn’t imagining things all these years. I was just experiencing the mutation at its elemental self.