It was way back in 1983 when I lost my 58-year-old father to ‘health problems resulting in kidney failure’. Nothing more was known to the family and at 10 years of age I did not ask any questions. However, it was only as late as 1997 that I began to have an understanding of what had caused his death.
I was 24 then, working for a large multinational and had just been posted in the Human Resources department of the company’s factory near New Delhi. Our company had tie-ups with leading hospitals for employee health checkups. It was completely voluntary for employees to opt in and I decided to sign up for the Executive Full body Health Checkup.
24-year-old diagnosed with polycystic kidney disease
Most of the checkup went well. However there was one problem. The radiologist looked worried as he peered into the ultrasound monitor. Solemnly he asked me the reason for this examination. I told him it was just a routine company-paid health check. He explained that my kidneys had numerous small cysts which would vastly increase in number as I grew older, ultimately causing the kidneys to fail. I was asked to meet a senior doctor at the end of the exams to discuss my reports from all the departments.
ADPKD is a genetically acquired, potentially fatal kidney disease
The Senior Physician was equally grave and told me that I suffered from a genetic condition called Autosomal Dominant Polycystic Kidney Disease (ADPKD). Although most of the other parameters were normal, my blood pressure was somewhat high. Further he told me that such a kidney condition could ultimately prove fatal as it does in at least in fifty percent of the cases. It was then deduced that since my mother was healthy, I must have inherited this disorder from my father who had passed away due to kidney failure. Although at that time, the exact reason for his kidney failure had not been known. Needless to say this dire prediction was a shock and I was really worried.
Though my initial reaction had been one of shock and dismay, I chose not to dwell on it and pushed it away from my mind. No one else knew about it and as I threw myself into work like never before, I very nearly forgot about it all. I was doing exceedingly well professionally and life was good. I went on to work in several organizations as Head – Human Resources. In 2004 I finally left the corporate world to set up my own entrepreneurial venture.
Face to face with full-blown ADPKD
However, the disease did rear its ugly head again not only for me — causing even higher levels of blood pressure. It was drastic for my sister who was also afflicted with the same hereditary condition. Her case was even more severe and was accompanied by other complications like elevated levels of thyroid. All this was compounded by an attack of tuberculosis. She was diagnosed with complete kidney failure in November 2008. But unlike what happened to my father in 1983, she survived. (I think that was a time when India did not have proper diagnostic equipment to detect such diseases. Treatment options such as dialysis were not easily available to everyone). But we did not know at the time that our struggles had only just begun.
There were complications and setbacks almost on a daily basis for my sister. Even the basic procedure for successful dialysis, which is the creation of a fistula failed multiple times. At times there was internal hemorrhaging and severe cramps while dialysis was being administered.
Coping with renal failure due to ADPKD
The mental impact of all this on me was quite bad since I was monitoring my sister’s health closely, meeting her doctors and accompanying her to hospital frequently. All this while knowing fully well that since I had the same condition, I could reach a similar state anytime. If one is healthy and has to look after another person, one can do it with focus. But if you know you could be in the same situation shortly, it’s not easy at all. I started doing my own research on the disease over the Internet on a daily basis. I even started experimenting with alternative medicines to try and delay the onset of kidney failure. Alas, none of it worked. In fact it only hastened the deterioration of my condition such that in March 2011, I was diagnosed with kidney failure.
Strangely, I felt a sense of relief, since I was finally facing what I had feared all along. The fear of anticipation of this moment had gone, which had been worse. Now that I was there, I could face it head on.
By the next year, both my sister and I knew we would have to opt for a permanent solution. The solution was ‘kidney transplant’ in the place of continued dialysis that was definitely not proving to be an optimal solution.
My book: Fight for Life
My story of this 14 year journey – from being diagnosed with a fatal genetic disease that is incurable to good health — has been published in the form of a book named Fight for Life, which is available both in eBook version globally on Amazon and also as a paperback in some countries.
Fight for Life is available at the following links: