Arpana’s long wait for a donor heart

The 22-year-old Arpana’s ailing heart sank when she learnt a few days ago that she would not be the beneficiary of the heart that was harvested from a brain-dead man in the State.

Her agonising wait for a heart to be transplanted may continue further. The catch? That she is a foreign national. Arpana, a Nepalese national, reached India six months ago and has been waiting for a donor heart for the past four months, having registered in the organ transplant waiting list. 

Although Arpana is fit, deserving, and on the priority list for receiving that heart, Indians have first preference. She could not receive it this time as the law stipulates that whenever there is an Indian national demanding a heart, the donor heart will go to them, the doctors add in unison. “She is in the super urgent heart transplant listing as her disease can lead to fatal complications any time,” a panel of treating cardiac surgeons, cardiologists, and anaesthetists said. 

Section 4 (e) of the Transplantation of Human Organs and Tissues Act 1994 stipulates that the sequence of allocation of organs shall be in the order: State list- Regional list-National list- Person of Indian Origin - Foreigner. And so, despite being deserving and in the priority list for receiving a donor heart, she could not get the heart this time. Her guardians are considering moving the Prime Minister regarding this. 

But Arpana aka Durga Kami, who has taken up a temporary residence in Kochi, is oblivious to all the legal nitty-gritty, although she is aware of the recent heart transplant that was carried out at the private hospital. Despite her serious heart condition, she stays cheerful and beams brightly, exuding a strikingly unswerving optimism. 

“I have heard so much about Kerala from childhood, about the places here and even that the treatment here is good,” says Durga Kami, who likes to be called Arpana.

If a viable heart becomes available, the heart transplant will be held at General Hospital (GH), Ernakulam.. “We are just waiting for a viable donor heart. The problem is that we are not getting a good match and the law also serves as an obstacle,” said Dr. Shahirsha R., medical superintendent, GH.

Arpana started experiencing trouble with breathing when she was 19. “I was in 12th standard then. I started having breathing problems and swelling in the legs. I did take treatment in Nepal,” recalls Arpana, who was living in an orphanage in Nepalgunj in Nepal then.

Aparna reached Kerala due to a chance meeting with Dr. Shajan Varghese, CMO, St. Joseph Hospital, Kothamangalam. “We had travelled to Nepal and I know the people running the orphanage. They asked if we could examine the patient. Once I returned to India, they called us again as the girl continued to have health issues. Around that time, the General Hospital was looking for a suitable recipient for the transplant. The girl is suffering from hypertrophic cardiomyopathy. She is in urgent need of a heart transplant,” said Dr. Shajan. 

Arpana says that ever since she started the treatment in Kerala, she has been feeling better and the symptoms are not as severe as they used to be. “The doctors here told me that transplant is the only way out. I am not experiencing as many health issues as I used to. I do not have any breathing difficulties now. I am being taken good care of here by the doctors and nurses. I am so happy and grateful for that,” says Arpana. 

“I am positive that the transplant will happen. And God will help. My brother helps keep up my spirit. He tells me that everything will be okay,” says Arpana.

While she likes living in the State, she does miss Nepal. “I do miss everyone at the orphanage. I grew up there. After the transplant and treatment, I hope to go back to Nepal and continue my studies,” she says.