Transplanting hope

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When she was 25 years old, Reena Raju’s world came crashing down around her. Having graduated from the Good Shepherd Convent and Mount Carmel College, Reena was a state level hockey player, singer and complete extrovert, just happy to be alive.

It started with a simple cold. One month later, doctors diagnosed her condition — Dilated Cardio Myopathy. Today, Reena Raju is the founder of Light A Life – The Reena Raju Foundation, which provides care to people with end-stage organ failure, educating them about what an organ transplant is, how to go about it in India and teaching them about palliative care and medication. The catastrophe comes with no warning. A simple viral fever could result in massive heart failure. Her condition worsened rapidly, but for four years, Reena pulled on, bound by a number of restrictions. “In 2009, my doctor told me I needed a heart transplant. He said I had six months to live otherwise. I couldn’t take in more than one litre of liquid a day, I was living on sips of water,” says Reena. By the time her doctor said she needed a transplant, Reena was too weak to keep her eyes open. “I couldn’t even sit up in bed to have a conversation,” she says.

Reena signed up at a government centre where she waited for six months, hoping for a donor. “I waited six months but nothing happened,” she says. “There is no awareness and Karnataka still doesn’t have an active transplant programme.” The donor came to her in the nick of time. “Reena had hours to live,” says her twin, Roopa, who goes everywhere with her sister. Fifteen days later, the transplant was complete. Miracles happen and Reena Raju is a testament to that.

Then a new set of troubles began. The medication for post-transplant care is formidably expensive and consists primarily of an immunity suppressant and an anti-rejection drug. A patient only has to go a few days without the medication and the body will reject the transplanted organ. The results, as you can guess, are fatal. When she returned home to Bengaluru after her operation, Reena began to find out just how much the transplant had done for her. “I started singing again, riding a cycle and even playing hockey,” she says. “A year ago, I had been written off completely, as good as dead.”

The trauma of the situation — to part with an organ, live with the many restrictions life imposes both before and after a transplant, the lifelong dependence on medication — knows no bounds. Reena’s first attempts at spreading awareness were sporadic — making public appearances touted as Karnataka’s first heart transplant girl, which did little more than create a ripple.
“I started participating in marathons, I was the girl running with someone else’s heart,” she remarks. That’s when the public sat up and began to take notice of the courageous young woman who lived life to the fullest, battling almost insurmountable odds to do so. “I also started singing and this brought many people forward to donate their organs.” The idea of the girl who sang with a stranger’s heart was a very romantic one and people sat up to take notice.
The medication she must take every day for as long as she lives has resulted in very poor immunity, which means Reena continues to live a very sheltered life. “If I so much as shake hands with somebody who has the flu, I will catch it,” she says. “My doctor told me to avoid those situations completely.” This means Reena can never leave her house without her hand sanitiser or her N95 mask. But for a transplant patient, even the smallest infection can turn fatal.

In 2011, the Light a Life Foundation was officially registered as a charitable trust. One of the three main objectives of the trust is to spread awareness on organ donation and transplantation across the nation. This is done through awareness drives in schools, colleges, corporates, clubs, the community and the media. The second objective — and this is of the utmost importance — is counselling. This means talking to patients who are faced with the prospect of a transplant, educating them on the implications of such an action and teaching about palliative care as well. Helping loved ones cope with the situation is part of the deal, too. “Everybody in my situation needs at least one person who will support them through it all. I had my sister and my fiancé, who have always stood by me.”

The likelihood of death caused by post-transplant neglect looms large always. “In India, many people can’t afford the medicines. In fact, spending up to Rs 15,000 a month on medication alone is something even a middle class family will find difficult to do,” points out Reena. Light a Life Foundation has sponsored three patients so far, gifting them the medicines they will need. “We look to corporates and individuals for help. Adopting orphans and cancer patients is common, why not the people who are living with someone else’s organs?”

Suffering is no stranger to Reena. And that is what sets her apart in what she does. “I understand the pain, the sadness and the hopelessness of the situation and that’s what I help people with,” she says. Dr K.M. Cherian, who has treated Reena, became a source of great support and encouragement. “When I told him I wanted to live to help this cause, he pulled out all the stops to support me and my foundation,” she says.

In just one instant, when you least expect it, life can take away that which is most precious — living. For four years, Reena stared death in the eye and there are scores of people like her, who are not so lucky. Organ donation cannot be done without family consent, so tell a loved one today. It really is the thought that counts.