Life can catch you off-guard when you least expect it. At 38, homemaker Uma Ganesh was a picture of contentment. After a three-year stint in the United States, husband Ganesh Nerur was home, and they were all finally living together as a family in Chennai. Then, reality struck — Uma was diagnosed with chronic kidney disease (CKD) in 1999. With her family’s help, she managed the disease for 16 years. When her kidneys failed completely and doctors said she would have to be on dialysis, Nerur suggested that he could donate his kidney to his wife. It was a match, and a kidney transplant was done. Life kept springing challenges, but the couple never wavered.
A psychologist and retired global head of banking practices at a multinational IT firm, Ganesh Nerur now helps kidney failure patients deal with the impact of the disease. “Death is inevitable. It is what you do with your life that is important. Whether you live with one or two kidneys does not matter,” says Ganesh Nerur.
Here is their story in their own words.

Uma Ganesh, 64, homemaker

It was a rude shock for us when a routine investigation revealed that I had chronic kidney disease (CKD). To make matters worse, a leading nephrologist told us that my kidney would fail completely in three years. I was just 41 then. I was concerned about my health and also worried for my children and elderly parents-in-law. As the eldest daughter-in-law, I was looking after them. We sought a second opinion from another nephrologist (my current one), who was more positive and put me on a strict treatment regime.
From an active person shouldering all the responsibilities at home, I became a patient. Weight loss, discolouration of the nails, weakness, fatigue and dwindling appetite were some of my symptoms. I also went into early menopause as a result of CKD. The doctor advised a low-protein, low-salt diet and many fruits and nuts were not allowed. For a foodie like me, adjusting was difficult. Life became a cycle of medications, blood tests, weekly injections and monthly visits to the doctor. One thing that kept me going was the constant support of my extended family. We also engaged a cook, so I wouldn’t strain myself.
Gradually, we got used to the modified lifestyle. My husband and I rarely talked about my ailment and we didn’t worry too much about the future. One day at a time was our mantra. In 2016, I underwent a transplant, thanks to my husband who donated one of his kidneys. I completely avoided the intermediate stage of dialysis, which is not only expensive but also restrictive. After surgery, I was in the ICU for four days followed by 21-day quarantine in strictly aseptic conditions. It was lonely but manageable. The good news was that my kidney parameters were normal, and I came home, where I continued to be in quarantine for three more months. In six months, I was almost my normal self, albeit with medications. It is six years since my surgery and despite health setbacks, including severe osteoporosis, I am happy to do the things I love, including travel. My transplanted kidney is doing fine. I believe a positive attitude, trusting your physician and the loving support of your family go a long way in alleviating the impact of such a chronic disease.

Ganesh Nerur, 68, psychologist

When my wife was diagnosed with kidney disease, the news spread panic among our family and friends. I put on my rational cap and decided to arm myself with information about CKD. I came to know that once the kidneys start failing, they deteriorate gradually and finally reach what is called ‘end stage renal disease.’ Once someone reaches that stage, you go either for a dialysis or a transplant to survive. Some friends and relatives suggested everything from alternative therapies to bizarre remedies to treat the ailment. But we decided to pay heed to the nephrologist and focus on managing the disease in the best way possible.
My wife is a very good patient. From the beginning, she was meticulous in taking medications and complied with her doctor’s advice. This helped her manage the disease for 16 years. In 2015, the doctor asked us to prepare for the inevitable — dialysis, a process of removing waste products from the blood with a machine. When the surgeon was examining by wife, I suddenly asked, “Why can’t I donate my kidney?”
I went through all the donor procedures to determine suitability and it was a match. That’s how my journey as a donor started. I was not anxious or worried as I knew other people, who were healthy despite having only one kidney. I also trusted my nephrologist, who would never advise me to donate an organ if there was a risk to my health. It was the best decision I had taken because my wife did not have to go through dialysis, which can adversely affect quality of life. Moreover, getting a cadaver kidney is a cumbersome process and the wait can last many years.
The surgery was uneventful, but I had excruciating pain in the abdomen for the following two to three days. But I recovered well and so did my wife, who thrived after the transplant.
Now, I have made it my mission to educate people about CKD. I am also part of the Kidney Warriors Foundation, an advocacy group that espouses the cause of kidney patients. I have also written a booklet about the disease and help the afflicted to cope by sharing my own experience with them.