I wasn't scared. My father was scared though, but I comforted him. I am not scared of death,” says 22-year-old Piyush Rai, who underwent heart transplant more than three years ago, and has come to Chennai from Kolkata for his yearly check-up.

Dr Paul Ramesh, Senior Cardiothoracic and Transplant Surgeon, Apollo Hospitals - Chennai, says that if 75 per cent of heart transplant recipients go on to live for five years and 60 per cent for 10 years, this is comparable with the best world standards. Piyush is aware that his years are numbered, but he believes that “God has sent me here for some reason, so I'm not going to die so fast.”

The son of a jail guard, Piyush's health problems started when he was 13. “After walking ten steps, I would feel very tired. I was on medication for five years and the problem went from bad to worse.”

Doctors suggested Chennai for further treatment because Kolkata lacked the expertise for this high-risk surgery. “His heart was failing and he was not able to manage daily activities,” says Dr M.R. Girinath, Chief Cardiovascular Surgeon, Apollo Hospitals -Chennai, who operated on Piyush. “Luckily, he got a heart when he was here and he pulled through.”

Piyush's case highlights the difficulties involved in transplanting hearts — from getting the organ to ensuring the body doesn't reject it.

He was “lucky” to get a suitable donor heart. Because not all brain-dead persons have healthy hearts to donate. Also, not everyone is a willing donor. “Most people will not donate their hearts – they don't mind giving kidneys or liver but ‘taking your heart away' has religious significance,” says Dr Girinath. Some people also hold a religious belief that the dead will not be reincarnated if the heart is taken away, adds Dr Ramesh.

Many patients suffer because of lack of donor awareness. At Apollo Hospital, five people are currently on the waitlist for a heart, with one critical in the ICU.

Patients planning to go abroad for a heart transplant have to think twice, because organ shortage is worse in the West, and hospitals don't generally accept international patients.

Despite the shortage of donors in India, there is no black market for hearts, says Dr Ramesh, “because it is a single organ, unlike the kidney where you can live on just one.”

Act fast

As in a kidney transplant, in a heart transplant too, two teams of doctors are involved; one harvesting the organ, and the other transplanting it, says Dr Girinath. But with the heart, doctors need to act faster.

Dr Ramesh says, “A heart has to be used within 4-6 hours after it is taken out. Once a donor and recipient are matched, the surgery takes two to three hours.” This high-risk surgery is done keeping in mind that the patients don't have much options left. “The risk from the operation is much less than the risk without the operation. Their own health condition has a much higher chance of killing them,” he adds.

Patients who require heart transplants are those in whom the heart's pumping action is so bad that no medicines can help, and they've reached a point of no return. Dr Ramesh estimates that over 50 cardiac transplants have been done in India, with the All India Institute of Medical Sciences (AIIMS) in Delhi accounting for the most number. India's first heart transplant was also done at AIIMS.

“We've had one of the longest survivors at 14 years — he was in his 50s when he died,” says Dr Ramesh. “Dr Girinath did this surgery in 1995... he died from renal failure, which sometimes happens because some of the anti-rejection drugs can affect the kidneys.”

Money matters

The surgery costs Rs 8-10 lakh if there is no major complication. Most health insurance companies do not pay for heart transplants. “It's not just the cost of surgery but the long-term cost they are worried about covering — the immunosuppression, the repeated tests, prevention against infections — all that costs money,” says Dr Ramesh.

In Piyush's case, the surgery bill (after subsidising) totalled Rs 5 lakh — much of the amount was waived by the hospital because his family could not afford it. Some of the anti-rejection drugs can be expensive and there is the added cost of biopsies, which have to be done periodically. Piyush's father, Shiv Shankar Rai, says, “I make Rs 14,000 a month, out of which Rs 12,000 go for just the medicines.” The doctors estimate that a patient spends about Rs 2.5 lakh annually after the transplant.

Although the first heart transplant in India was done in 1994 by Dr P. Venugopal, only a few hospitals, such as AIIMS and Apollo, have a “sustained heart transplant programme”. Dr Ramesh says, “There have been one-off heart transplant cases in a handful of hospitals that get reported in the media and there have been some that were unsuccessful too.”

Job hunt

Piyush's road to recovery has been long and difficult. Since the transplant in 2008, his father says that a job has been hard to come by, given his health history. “When people hear that my son has had a heart transplant, no one gives him a job easily because they are afraid that anything can happen at any time,” says Shiv Shankar.

With the help of some friends, Piyush had a short stint in shipping, where he held a desk job. But he does not know if that job will be waiting for him once he's back in Kolkata ,and he worries about the future, as the medical bills pile up.

After the transplant, patients generally go back to a normal quality of life. “I have a patient who has gone back to work fully – he is a senior deputy manager in one of the big banks. He is working better than before. An American patient of ours runs 15 km a day, something that I can't manage,” says Dr Ramesh.

Same drugs

Even though transplant recipients may lead a normal life, they will always have to be on medication.

“At the end of the day, it's a foreign organ”, says Dr Girinath, “but after the first 2-3 years, the rate of rejection comes down so we can reduce the medicines.” Newer immunosuppressant drugs have fewer side-effects but are more expensive.

Then there is also the problem of infections as these drugs suppress the immune system.

Some of the steroids can result in weight gain too. Piyush says, “My face has become fat. Like everybody else, I want to look good, so if I'm slim it will be nice”

Among transplanted organs, the liver has the least danger of rejection, followed by the heart and the kidney. There is misconception that a transplanted heart is rejected more than the other organs, adds Dr Ramesh.

But there is a catch. “In a kidney transplant, patients can always fall back on dialysis if it doesn't work, but “the heart has to work from the minute it's implanted – there is no rest time. Margin for error is less in a heart transplant,” he adds.

Quick facts

Spain is one of the few countries which follows an opt-out organ donation system – unless you opt out of it, when you die your organs will be taken. The country has the highest organ donations in the world, according to the International Registry of Organ Donation and Transplantation, with 34 deceased donors per million population in 2009.

>rhea.l@thehindu.co.in

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