Undergoing pioneer transplantation in Malaysia

Siva Kumar Raghavan, a 52-year-old Malaysian, tells the story of how he was diagnosed with Immunoglobin Nephritis A(IgA) when he was only 38 years old. He explains how he was the first person to have access to an ABOi (different blood type) transplant between spouses in a Malaysian government hospital. Unfortunately, after a few years, the kidney he received failed, and he had to go back on dialysis. To support others in a similar situation, he became president of the Green Ribbon Support Association (GRSA) to advocate for improved organ transplants in Malaysia.

I am the eldest of 4 siblings. All my family members are healthy, and we have no family history of chronic kidney disease. I have always been an active person, adventurer, and entrepreneur by nature.

I was never sick or admitted to the hospital until I was diagnosed with chronic kidney disease (CKD) in 2008 when I was only 38. The cause of my kidney failure was an inflammation of the kidneys due to an antibody known as Immunoglobumin A (IgA), which apparently is the commonest type of glomerulonephritis in this part of the world. For the next three years until the end of 2010, I maintained myself very well by controlling my protein diet and being conscious of my eating habits.

In early 2011, I was introduced to a Korean algae product that claimed to cure chronic kidney disease and even restore kidney function. Being hopeful and desperate, I did not hesitate to let this golden opportunity to save myself from this misfortune pass. Unfortunately, the opposite happened. My kidney condition worsened considerably that year, going from a creatinine level of 180 to 1200 in 6 months.

In January 2012, I began immediate care with my nephrologist and started dialysis as soon as possible. I then opted for CAPD [Editor’s note: continuous ambulatory peritoneal dialysis] for six months.

My wife (who eventually became a live, spousal-related kidney donor to me) and I were counseled by our nephrologist

We were the first to do a Spousal Living Related ABOi (different blood group) Transplant in a Malaysian Government Hospital. The Transplant was an instant success. I was up and running in just five months. Due to the ABOi Tx, I was given a high dosage of Immunosuppressant to manage my antibody. 

However, after two years, I noticed a gradual increase in my creatinine. My kidney was slowly weakening. After some tests, it was confirmed that I had the BK virus [Editor’s note: also called polyomavirus]. I was immediately admitted and “given several vials of expensive vaccines imported from Europe”. Fortunately, the virus was treated quickly, and my transplanted kidney was saved. After this incident, my immunosuppressant medication was reduced. Two years later, I had another increase in creatinine, and this time it was “fatal”. My transplanted kidney could not be saved, so I had to go back on dialysis in September 2016.

The challenges thrown at me were not only limited to my health. After I was diagnosed with CKD in 2008, my employer also terminated my employment in 2009. But it only made me stronger!! I started my own business and trained my wife to be an entrepreneur, worried and not knowing how long I would live. Ironically from 2010 until now, I have opened four new business startups and was given the opportunity for more than 30 people to be employed in my businesses. Currently, I am working on establishing two more new startups as well.

Meanwhile, during all these episodes of transplants happening from 2012 to 2016, I have taken over the presidency of the Green Ribbon Support Association, which brings together 300 transplant recipients (kidney, liver, bone marrow, and heart). I brought a group of Transplant recipients to the Asian Transplant Games in Bangkok, where I won a bronze medal in a 5km walk competition. We also sent a few of our members to the World Transplant Games in Rio and the UK.

After starting my journey as a dialysis patient, I knew that my chances of obtaining a deceased donor organ were very slim due to the sad state of statistics converting brain-dead patients into potential organ donors in my country. I started to join hands with a few enthusiastic nephrologists and practitioners like Datuk Dr. Ghazali Ahmad, Dr. Rosnawati, Dr Vijay, Dr Iqbal and Dr. Sunita in making transplantation successful in Malaysia.

While on dialysis, I realized that if my heart stayed strong and I exercised, my life expectancy would be longer. So I started walking around my neighborhood, then moved on to small hills before challenging myself to climb mountains. So far, I have climbed several mountains in Malaysia, including Borneo’s highest peak, Mount Kinabalu, which is 4100 meters high. With the help of my nephrologist who coordinated my dialysis sessions closer to the mountains, I was able to do my dialysis before and after the climb in Sabah.

I truly hope I will get a chance to be transplanted soon so that I can live a quality life longer with my loved ones. I have a beautiful loving wife and two adorable children, my son is 12, and my daughter is 8. I am also grateful to the community that supports me, especially my staff and my Rotary friends.