A stone-crushing journey!
My childhood was a fairytale-I had it all! Life was about being brought up by love and care of doting parents and a sibling for a best friend. So when I went through this very intense pain in the back, for my tender age homeopathy was the chosen health treatment. Soft, gentle to give me relief. Apart from those tiny, sweet homeopathic pills, I was advised an X-ray.
The kind doctor, showed the image on screen. I remember his finger pointing it out to my Dad. “These are some stones that are forming here…” and he spoke in detail and I saw watching the men very concerned. As I review my life in 2017, this was my first memory of kidney disease at age 7.
Real, noticeable or rather comprehensible things happened in my 13th year, when the pain re-appeared. To avoid any invasive treatment, on our request the doctor suggested Lithotripsy, that uses sound waves to break up large kidney stones into smaller pieces. Once broken down the stones find it easier to find passage through the bladder. Before start of the treatment I was warned that the right kidney would shrink due to impact of the waves.
At this point I also learnt that the stones were formed due to calcium oxalate stone formation. For the first time, in my early teen years I was being exposed to medical terms and treatments that was new even to my larger family members.
I sat there, wondering and trying to understand what I was getting into. The doctor handed over a diet chart, gently explaining, “If you can maintain this diet, the stones will not form again.”
I was advised to drink water like a fish! I used to get very amused when I was introduced as the youngest stone former in the hospital.
Life seemed peaceful. But I was imagining!
It came back with a bang, waking me up from my make-belief world. I was 23 years and as unwelcome as it was my blood test reports showed my creatinine was 4.5mg/dl. Tests reveled a massive stone in the left kidney. This led to hydronephrosis. My kidney was swollen and passage for the urine was blocked. Now, I was in a position to decide so underwent a laser surgery to remove the stone. As advised, I went to a nephrologist for following up on the high creatinine. Miraculously a month later due to utmost medical compliance, my creatinine came down to 1.2.
I breathed, thinking a hurdle was squashed.
But I did not rest. It was time to sort this madness!
“I am extremely worried on this a recurring stone formation! I suffer, get over and start living then I go back to square one! Doctor, please help me to unearth this, to get to the root cause!” I discussed with the urologists, debated and pushed them to reason this out for my consolation. There were 3 more episodes that happened within a span of the next two years.
The tests were all clear, there was no specific ailment found. It was out down to “predisposition to stone formation”.
Meanwhile, life took me to Bangalore where I worked with an IT organization. Best phase of my life, so upbeat, good friends and life could not be better. I was able to manage work and health with strict diet and regular check ups. But I was loving my life, living my dreams!
It’s like a snake that raises its hood, so problems re-surfaced in January 2013. By now I could sense symptoms. I was constantly weak and work didn’t excite me anymore. On my parents’ insistence, I shifted to Delhi. Some months later on 6th Nov ‘2013, I had a uremic seizure. Further investigation revealed a creatinine at 17 mg/dl. I had a kidney failure. That moment is forever etched in my mind.
“It takes a few seconds for our life to change,” I thought sadly.
After two months on dialysis and I got a transplant. There were numerous complications post transplant. A biopsy of the graft revealed, that there were numerous oxalate deposits. I underwent a genetic testing at a Delhi hospital, then contacted US’s famed Mayo clinic. In August this year, I was diagnosed with Primary hyperoxaliuria type 2. I had what was classified as a rare disease, that’s caused by a genetic mutation. The only cure for this currently is a combined liver and kidney transplant. There’s risk associated with such a transplant, with no great success rate attached to it.
I was finally at peace, with the knowledge of what caused all this upheaval.
In a rare moment, I recalled a causal remark before my transplant. A nephrologist had suggested that my case was not appropriate for an isolated kidney transplant. It was one of the most difficult decisions of my life. I wasn’t faring well on dialysis,I decided to take the plunge as it assured me a couple of more years off it.
Such thoughts and memories make me wonder, if a right decision can ever be made. After a coin does have two faces.
On 18th January 2017, I completed 3 years with this kidney. But the kidney has now developed nephrocalcinosis too. Over the years, fight as hard as I will my rising creatinine has made no effort to relent. I may go back on dialysis anytime soon though I hope that distance stretches. My team of consulting doctors is working very hard to help me keep my kidney for as long as possible.
This time around though, I’m better prepared to handle the situation. Family and friends have been a great support through all of this.
I’ve learnt through the roughest patch of my life, though circumstances don’t favour us always, we certainly can bank on ourselves. I’m contemplating a major career shift from a corporate job to a baker to suit my lifestyle now. Nothing equals to combining productivity with happiness.