Some eight years back, Rupayan Roy was devastated by the news that he had dilated cardiomyopathy — an irreversible heart condition. An officer with a government agency, he was 40 years old and a new father at the time. What followed was a rollercoaster of emotions, medical intervention, and a miraculous turnaround. Cut to 2022 – he has at least eight marathon runs under his belt.
Here, Roy, a resident of Kolkata and West Bengal’s first heart recipient, shares with Happiest Health his gritty and remarkable journey from despair back to health.
A bolt from the blue
In 2014, I started experiencing shortness of breath. That is when I visited a doctor who gave me the worst news anyone could receive; especially to someone with an infant son. I was diagnosed with dilated cardiomyopathy*, with only 20 percent of left ventricular ejection fraction or EF^. The doctor I consulted told me that I could suffer a heart failure any time.
What is dilated cardiomyopathy?
Dilated cardiomyopathy is a type of heart muscle disease that causes the lower heart chambers (ventricles) to enlarge and stretch thin, thus growing larger. It typically starts in the heart’s main pumping chamber, the left ventricle. 20 per cent of sudden cardiac deaths occur due to cardiomyopathies and general channelopathies.
(^EF: EF is the comparative amount of blood pumped out with respect to the amount of blood in a heart chamber. For the ventricle, the normal range EF is 55-70 per cent. Source: American Heart Association)
I had heard about people suffering from cardiac problems, but I never thought I would be in that situation. Having been a sportsperson all my life, I could not believe that I had an irreversible heart condition that could turn fatal without notice.
`It won’t ever recover’
From then on, I started visiting numerous doctors across India, looking for answers. However, most of them did not have a clear response. When I consulted renowned cardiac surgeon, Dr Devi Prasad Shetty, in Bengaluru, he said, “Roy, medicines only help you to an extent, but if you want to lead a happy, healthy life, you will need a cardiac transplant. Your heart is not going to heal.”
Flight tickets, medicine costs, appointments with different specialists — all this was costing me a lot of money and I was losing hope. There was tremendous mental agony and pressure, and my otherwise optimistic mind had retreated to a dark corner.
A ray of hope
The lack of real-life cases and knowledge of heart transplants made things worse. I had heard of kidney and liver transplants, but heart transplants were still in the nascent stages back in 2015. As it was my only chance of survival, I started to dig deep.
However, I started feeling hopeful after the reassurances given to me by Dr K R Balakrishnan, Chief Cardiothoracic and Transplant Surgeon of Fortis Malar Hospital, Chennai. I was extremely sick by then, but he assured me of a new heart, telling me I could even run marathons after this.
Cardiomyopathy survivor: An inspiring model
Soon, I met Dr Anil Gupta, who had just had a successful heart transplant. The 61-year-old doctor was truly inspirational to me at the time, and his impactful words gave me the energy to carry on. He told me, “Roy, don’t bother. If I can handle this pressure and come out stronger, so can you. And you are 20 years younger than I am.”
Seeing this man full of hope and willing to share it with me was incredibly touching in this journey.
A fresh lease of life
I shifted to Chennai temporarily and was in Dr Balakrishnan’s care. Two months later, on July 31, 2016, I got a new heart.
Life changed drastically after that. No visitors, no food from outside, a lot of rest, and medicines to make sure I don’t catch any kind of infection while my body adjusts to the foreign heart. I first stepped out of home a year after the surgery and it was to watch a movie.
When a sport beckoned
The cricketer in me was restless. Unfortunately, I could not play the sport as I used to: my doctor had said any high-energy, contact sport would send me back to hospital. However, I was recommended running, and that is when something clicked.
What followed was slow exercise every day until I was able to run one day. I started in 2017 with the 5-km BSF Marathon in honour of our martyred jawans. My wife was not in favour of it, but the cause inspired me to participate and I realised that I could do it without much difficulty.
The long-distance warrior of Cardiomyopathy
After the first marathon, there was no stopping. I attempted longer and longer distances, getting stronger each time. I have participated in the Tata Steel Kolkata Marathon 2017, the IDBI Marathon, the Bengal Rowing Club Marathon in the 10-km category; in the 15-km-category Run for Fitness marathon organised by Calcutta Swimming Club in 2018, and the Airtel Run for Education 2018; and the 21-km Tata Mumbai Marathon. The last marathon I ran was the 25-km-category Tata Steel Kolkata Marathon in 2019.
When someone refers to me as a transplant patient, I correct them and say, ‘transplant warrior’. I am not going to lie — true, I had given up hope at one point. What can you expect when you were given a deadline on your life at 40?
Fortunately, the support of my family and friends and the dozens of well-wishers along the way give me the strength to carry on. A positive outlook goes a long way even in the direst situations, and I saw this work in my case. I had the resolve to never give up, even when I knew that luck has a part to play in these situations.
The incurable optimist in me saw me through this. I had the will to fight this, and my prayers, I believe, were heard. My son is nine now, and I’m glad that I’m here to see him growing up.
