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WHEN I turned 35, I was diagnosed with end stage renal failure. The doctor told me about the bad news in the worst possible way, with utter callousness and devoid of any empathy. Clearly, he had been a doctor for far too long.
About six months or so later I began dialysis, three times a week and four hours each time. Every session would leave me drained, tired and weak. What made it worse was I had to quit working and it was the most difficult time of my life. No one spoke to me about the possibility of a kidney transplant. It made for bleak days in between of treatment, which left me basically in a vegetative state to say the least. My weight plummeted from 85kg to 60kg in a year. I couldn’t walk 100m without taking a break. My eyes got so bad I couldn’t drive for fear of causing an accident.
I equated this time to climbing a mountain in the off-treatment days. I had to climb the mountain, by finding work, being efficient and effective as much as I could and then get wasted by the treatment, recover and do it all again. However, it taught me to be quick and work harder so that when I 'crashed' I could recover. This I learnt by just doing it day in and day out.
Nine years later I married, and my wife Melissa wanted to donate her kidney to me. She said she couldn’t bear to see the pain and suffering I was going through. We, through some recommendations of friends, went to Hospital Kuala Lumpur and met probably the best group of doctors in the country, led by Datuk Ghazalli. They were kind, patient and very knowledgeable and experienced at doing transplants, which was the stark opposite of the doctor who diagnosed me. Almost a year later on the 26th of June 2012, I underwent a kidney transplant at HKL.
The profound change that I encountered and went through is not printable here. It will need a book and I’m working on that. But chief among them is I could taste and I could drink! Man, could I drink! Being on dialysis for 10 years meant that I could only consume up to 800ml of liquids a day. Liquids that included, tea, coffee, water, soup. Basically, anything liquid. So post-transplant I could drink and boy, did I drink. Litres after litres of water, soya bean, sugar cane, basically anything I could get my hands on.
As part of this life transforming transplant, I started helping first the future transplant patients and then eventually a lot of others, when the World Health Organisation started a patient organisation in Malaysia. Called Patient for Patient Safety Malaysia, I was voted in as the first President and still hold that post.
In the past 9 years I have helmed many other roles within healthcare, both locally and globally, traveling to speak in Europe, the Middle East and Africa, as well as Australia.
The reason I’m able to do this is, is the life changing transplant. So, this year, on the 10th anniversary of that day, the Rotary Club of Melawati invited me and a few other kidney transplant recipients to climb Mt Kinabalu to promote organ donations.
Mt Kinabalu had always been on my bucket list, and the kind folks at Rotary Melawati helped train and prepare me every weekend since February this year. I keep myself as fit as I can, by going to the gym and cycling, but doing this climb meant being very specific in my training. Years of being on dialysis had wrecked my body and heart and I had to get a thumbs up from my cardiologist in IJN, Dr Teoh Chee Kiang and my team of nephrologists in HKL, led by Dr Sunnita Bavanandan. And then to complete that preparation, my physio Joesef Thomas made sure that 'mechanically' my body could perform the climb.
Many people have asked me why I put myself through so much pain and suffering to do this climb. Well, the simple answer is, it is far less than the pain and suffering I endured during my 10 years on dialysis. And that treatment, I didn’t have a choice but to just survive.
Today, as I celebrate the 10th anniversary of my transplant, I do so with my doctors, family, friends, well wishers and the 40,000 today who await a life changing transplant right here in Malaysia. So as you read this, I urge you to go to this website and read through it, and hopefully, sign up to be an organ donor yourself. And then after you’ve done that, do share this article with your family and have an open, honest discussion about your decision. If you need any more information that I can provide, do reach me on Twitter @manvirvictor.
In this story you will see Siva Kumar and Hanafi Salleh. Siva became the first patient on dialysis to summit the peak. Hanafi, a kidney transplant recipient became the first recipient to summit the mountain as well. Unfortunately, I was stricken with acute mountain sickness when I reached 11,000 feet and couldn’t continue the climb.
We hope that this will continue and more transplant recipients will be able to not only have a normal life but continue to shine the light on life changing organ donations.
I thank the selfless individuals at Rotary Club Melawati for planning this, training us weekly and preparing everything they could possibly do to help promote organ donations in the country. On behalf of Hanafi, Siva, myself and the over 40,000 waiting for a life changing organ transplant today, I urge you to do what you can to help change this dire outcome. – The Vibes, June 26, 2022
