Can a transplant lead to a change of ‘heart’?

Seems like it, say some of those who have another’s heart beating inside them. No, say the doctors.

It is purely psychological and has nothing to do with the surgery — of which there were just 110 in 2015 due to a combination of lack of awareness, lack of access to quality medical care and high cost.

Dr ZS Meherwal, transplant surgeon at Fortis Escorts Heart Institute (FEHI) in New Delhi, recalls a 40-year-old patient who told him that he had become very aggressive after the transplant. “The patient told me that he was driving very fast, while earlier he was slow in his demeanour. Such patients get so sick over a period of years that they lose their zeal for life. With a fresh heart transplanted in their body, they feel fresh and heroic,” he explained.

Though patients like 23-year-old Anwar Khan, the first in Mumbai to get a heart, feels that his voice has “softened” after a 52-year-old woman’s heart was transplanted into him, Hovovi Minocha Homji, and is a year older, says “it’s all in the mind”.

Homji, a Bandra resident, who was given a 27-year-old brain dead male’s heart in June 2014 in Chennai, says she feels no different in disposition. “It’s all in the mind. I did ask my transplant surgeon about this. He told me that he once had a male patient who got a female’s heart and started thinking that he had turned feminine in some ways.”

Chennai, known as the mecca of heart transplants with increased awareness on issues related organ donation in south India, was an obvious choice for Hovovi. Mumbai was yet to start a full-fledged heart transplant programme when she fell sick. She developed a viral infection that attacked her heart and her health started deteriorating within three months. “My doctors advised me to pack my bags and go to Chennai. There, one would ideally get a heart in a month’s time. But I had to be there to receive the organ,” she said.

Transplants have picked up pace in Mumbai recently with 36 transplants in the last two years.

Economics of the heart

Notwithstanding the advances in medical technology and India’s place in it, heart transplants are still rare because there isn’t enough awareness about organ donation and also because it continues to be prohibitively expensive.

Bhimsain Jhamb, 62, who was lucky enough to see the light of the new year after receiving a new heart, paid heavily for his life, literally. He had been suffering from blockages in the heart and a gradual deterioration of heart muscles since 2000. Between 2006 to 2014, he spent close to Rs 25 lakh on fitting and refitting devices into the heart that could make it function well. Fortunately, his wife Ravi was an employee of Engineers India Limited (ELI) and the company took care of all the expenses.

By 2014, his heart deteriorated beyond repair with its pumping action falling to barely 10 per cent. A transplant, which ultimately cost another Rs 25 lakh, was his last hope for survival.

Ravi thought ELI would reimburse the money for the surgery. But that was not to be. “They refused. They said it is such a rare surgery, we do not have the provision to reimburse costs. We had to arrange funds on our own,” she said.

At the government-run All India Institute of Medical Sciences (AIIMS), the cost is up to 25 times less than what it costs in a plush private hospital. In December last year, 19-year-old Mohammed Salman underwent a heart transplant in AIIMS and paid about Rs 1 lakh.

“Poor patients are never able to get transplants done in private hospitals, whereas 50 per cent of transplants at AIIMS are done free of cost. The rest pay a subsidised minimal amount,” said Rajeev Maikhuri, AIIMS spokesperson.

AIIMS has completed only 51 heart transplants since the inception of its programme in 1994, averaging to over a little over two transplants a year.

Asked how many patients were on the AIIMS wait-list and how many had died waiting for a heart, Maikhuri said the data was confidential and could not be shared.

The numbers

Up to 1.45 lakh persons died in road traffic accidents in India in 2015. Persons that die in accidents suffer brain damage and are largely declared brain-dead. They are eligible to be cadaver organ donors. According to a data compiled by organ donation awareness foundations, India requires about 50,000 hearts a year. But awareness about organ donation in India is very poor, say doctors.

In 2015, a total of 110 heart transplants came through in India — a drop in the ocean but the highest in any year so far. For every one person who received a heart in 2015, 455 who needed a heart were deprived of it. “Fifty per cent of all those that need a transplant and do not end up getting one, die within the first year of being on the wait list. Up to 88 per cent will die at the end of two-and-a-half years. It is tough for a patient who needs a heart to survive longer than three years without getting one,” said Dr Paul Ramesh, transplant surgeon at Chennai’s Apollo Hospitals.

Each hospital maintains an individual wait-list of patients and submits the information to National Organ and Tissue Transplant Organisation (NOTTO) run by the Ministry of Health and Family Welfare. Asked for more details, Dr Suresh Badhan, Head, coordination for NOTTO, refused to part with the data.

Though there no separate data is maintained on how many children require a heart and how many end up getting one, doctors estimate that over 4,000 children may be dying waiting for a heart every year.

Of the 50,000 a year who require a new heart, 5,000 are children — that is, one of every 10. “In 2015, of 110 heart transplants that occurred in India, barely one fifth of all, which means a paltry 20 odd were children,” said Dr Swati Garekar, paediatric cardiologist at Fortis.

Does India have a heart?

A month ago, a desperate couple from Pune brought their six-month-old baby girl to Mumbai for a heart. She died last week, succumbing to cardiomyopathy even before she could be put on the wait-list at Fortis Hospital in Mulund.

The baby weighed a mere five kg. Doctors were in a fix. How could they get a heart so tiny that it would fit inside her rib cage cavity.

“The baby weighed five kilos. We could have accepted the heart of someone whose weight could have been three times higher, a maximum of 15 fifteen kilos,” said Dr Vijay Agarwal, paediatric cardiac surgeon at Fortis.

“When babies are gripped with heart disease early in life, it is more severe.”

The six-month-old was the latest to be added to the list of deaths. In the past two years, three children — a 14-year-old girl, a 5-year-old boy and a 10-year-old boy — have died waiting for a heart in Maharashtra.

On the wait-list at Fortis, 3-year-old Aaradhya Mule is battling for life. Mule slipped into heart failure as the pumping capacity of her heart reduced to less than 20 per cent after a viral infection.

She is admitted to the ICU every month as her heart function deteriorates. “After she is injected medicines she recovers, then yet again she is admitted for ten days. This has happened six times now. At home, she can barely walk five to ten steps before tiring out,” said her father Yogesh Mule.

Aaradhya weighs just 13 kg so the heart of a person with body weight of 39 kg or less will work in her. “It is not necessary that the donor has to be a child. We compare chest x-rays of potential donors and recipients by super-imposition of one image over the other to see if the size will fit,” said Garekar. “It is difficult to get hearts for younger children because the smaller size of heart is challenging to acquire.”

As the young Aaradhya holds on to life and those like Bhamb, Anwar and Hovovi celebrate their new innings with new hearts, debating the heart-brain connect, anxious families and the medical fraternity are fervently hoping that the number of transplants will pick up. And India finds its heart.