Group of 240 heart recipients and their kin build real-time support system to shares critical care info on those requiring transplants across cities; they have also compiled a large pan-India database covering various aspects of pre- and post-transplant care, which is shared and coordinated with recipients
Group offers logistics help, emotional aid, etc to those considering orgain transplant. REPRESENTATION PIC/ISTOCK
While many use WhatsApp for fun and frolic, a group of 240 heart transplant recipients and their family members from across India have joined a dedicated group of volunteers who act as a support system for those in need of similar treatment. They have also compiled a large pan-India database covering various aspects of pre- and post-transplant care, which is shared and coordinated with recipients.
These survivors serve as translators, advisors, fundraisers for new patients, families. Representation pic
Mumbai-based group admin Armaity Homi, one of the founding members of a group called Heartiest People, shared that, as a mother of a daughter who needed an urgent heart transplant and had to be airlifted to Chennai for the procedure, she has personally witnessed the immense challenges faced from diagnosis to transplant and life thereafter.
It was ten years ago in Chennai when the Homi family found much-needed support from the family of another organ recipient, Ganesh. Being locals, they helped the Homi by arranging temporary accommodation and bridging the language barrier by acting as translators to communicate with hospital staff. Appreciating the kindness of these once-total strangers, Homi recalled it was their heart specialist, Dr Bala Subramanium, who suggested the initial idea of forming a support group.
Dr Viney Kirpal, ex-English literature professor, IIT Bombay (right) Armaity Homi, Mumbai-based group admin
“To be honest, for the grieving family members to make an on-the-spot decision to donate the organs of their dear departed requires immense courage. All recipients pray and thank them with pure gratitude every day. Then come the challenges faced by the recipient and their family. Many have to travel from smaller towns to bigger cities like Mumbai, Delhi, and Chennai for the transplant. This requires large-scale planning. That’s where our volunteers step in and help,” said Homi.
She added that, in her opinion, organ donation facilities and awareness in South India, especially Tamil Nadu, are very well organised. She praised the state’s Transtan programme, which financially supports heart transplant recipients.
“At the time of my daughter’s transplant, she was just the fourteenth recipient in the country. Yet the level of professionalism and empathy shown by the doctors, nurses, liftman, and even the ambulance driver, who are now part of our extended family, was unmatched. Due to an unexpected delay, a green corridor was created so the organ could reach us in time, which was essential. This is something the rest of the country can aspire to and emulate,” she said.
Dr Viney Kirpal, an ex-English literature professor from IIT Bombay and an active group member who underwent a heart transplant nearly seven years ago, said that potential recipients often join the group to understand the transplant process, waiting periods, and logistical challenges.
She explained, “Once a question is posted, any experienced group member responds. We also provide emotional and physical support wherever possible, but we always strongly advise that patients consult their professional transplant teams for final diagnoses or medication to avoid complications.”
“Since transplant is still a relatively nascent medical intervention, not much is known even within one’s own city. Some potential recipients request crowdfunding support, and our volunteers assist to the best of their ability. We are here to tell the world that, apart from a few random challenges, we are absolutely fine,” said Dr Kirpal, who has now authored a book aptly called ‘New Life New beginnings’, which is a compilation of compelling stories, shared by organ recipients, donors and top transplant doctors.
Another group member, kidney recipient Jaya Jairam, project coordinator for the Mumbai division of MOHAN Foundation (Multi Organ Harvesting Aid Network), an organisation active for over 28 years in the field of organ donation, highlighted another vital issue that needs more awareness, Brain Death.’
“In cases of irreversible brain damage, where the brain permanently ceases to function, even if the heart continues to beat with the help of a ventilator, families are faced with a rare and powerful choice: to give life to others,” said Jaya.
“One brain-dead donor can save up to nine lives through organ donation and improve many more through the donation of tissues like corneas, skin, and bones. Yet this life-saving opportunity is often lost because families are unaware, uncertain, or unprepared to make such a decision in the midst of their grief,” said Jaya.
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