Becoming a kidney patient advocate

Manvir Victor, a patient advocate and media figure from Malaysia, was diagnosed with kidney disease at a late stage. Thanks to a kidney donation from his wife, he was able to continue his life and is committed to being a voice for kidney patients in his country.

I had no idea I was at high risk for kidney disease until I received my diagnosis at 34.

The doctor said my creatinine levels were dangerously high, and my kidneys had deteriorated to the point of 75% – which meant that it was irreversible. My first doctor told me I had to go for dialysis immediately, and let me add, in the worst possible way but after seeking more medical advice, I held off for a few months, thanks to another doctor who was very kind and patient.

A lot of people didn’t understand how I had gotten ill so quickly. I was fine. I was playing sports, back then I was a radio DJ, I ran the number one radio program in the country. None of this mattered as, like many people, I neglected to go for yearly checkups.

Everything came to a shuddering halt. When I started my dialysis in February 2002, I weighed about 86kg. By the end of the year, I dropped down to about 70kg. The illness hit me quite badly, both physically and mentally, to a stage where I couldn’t walk 100m without pausing. This continued for 10 long years and by the end of that period, I had been poked about 4000 times with a needle. Now, I have a genuine fear of needles and can’t even see it happening on tv or to anyone else.

In 2012, my wife donated her kidney to me and this changed my life drastically.
This second lease on my life makes me realise that together all of us can do more for others.

And while contact sports like football are ruled out, I now go to the gym, swim, run and cycle every day. I try to keep myself as healthy as I can now by eating right and doing all I can to keep myself active. 

In 2002, there were no patient organisations that I could join, and I felt isolated as a result. This encouraged me to speak to other patients when I returned to the hospital for check-ups. Now, I am the WHO chairman for patient safety in Malaysia, a member of the National Patient Safety Council and part of the British Medical Journal international patient panel. It is my privilege to serve the public at large and educate Healthcare on the necessity of engaging the 7 Billion plus people in the world to help the 50 million healthcare practitioners do their jobs. Healthcare needs help and there are so many impassioned patients who are willing to join and assist. We will continue to knock.