KARACHI: “It was a moment of great pain when doctors listed me as a ‘No donor patient’. I had thought a kidney transplant would end all my health-related sufferings in six months. But this has been more than three years that I have been on dialysis,” said Aamir, a young renal failure patient, at an event organised on Saturday at the Sindh Institute of Urology and Transplantation (SIUT).

Its aim was to highlight the plight of patients who have reached end stage of organ failure and have no family donors and to create awareness about the deceased organ donation programme.

Aamir was one of the three organ failure patients who addressed the audience, largely comprising patients experiencing similar challenges and their families.

His story helped journalists in attendance understand that while renal failure patients had the option to get on the life-saving dialysis procedure unlike patients facing failure of other organs, the procedure restricted one’s physical and mental capacity to utilise full potential due to the effects the procedure had on the body, mind and soul of a patient.

“I am the sole bread-winner of the family and the thought that how my loved ones would survive after my death often bothers me,” Aamir said, adding that his four-year-old son at times raised questions on his state of health that worried him.

According to experts an estimated 150,000 to 200,000 people die from organ failure in Pakistan yearly

Umeed, a liver failure patient in his late 20s, also experienced disappointment on being told that none of his family members could meet the criteria for liver transplant and was categorised as a ‘No donor patient’.

“I appeal to the people to try to understand our misery. The doctors here provide us with medicines, which is a source of temporary relief. But patients like me are in constant pain,” he said.

Banaras Khan, a heart patient who was refused a bypass surgery on medical grounds and had been waiting for a transplant for a long time, also poured his heart out to the audience.

Also in attendance was Naeem Akhtar, who suffered renal failure due to hypertension and 20-year-old Mohammad Hunain Bahadur, also a renal failure patient and son of a taxi driver in North Karachi.

“All my dreams to become a civil engineer diploma holder and support my family have been shattered. The dialysis which I go through twice or thrice a week renders me lethargic,” he said.

Twenty-four-year-old Mohammad Saad, a mass communication graduate who came from Bahawalpur for the event with his mother, suffered renal failure “due to doctors’ negligence”.

“I had a surgery of the spinal cord when I was just three-months-old, which went wrong and harmed my bladder. The diagnosis was made too late when it had already damaged my kidneys,” he said.

Role of the media

According to experts, an estimated 150,000 to 200,000 people die from organ failure in Pakistan yearly. So far, there have been only six transplants with the help of deceased organ donations. The number of transplants conducted with the help of living donors at the SIUT is more than 6,000.

Referring to various verses of the Quran, Dr Nasir Luck, a physician at the SIUT, highlighted Islam’s perspective on deceased organ donation and said the religion very much supported it as it valued human life above everything.

The deceased organ donation programme was being widely practised in all Muslim countries except Pakistan, he said.

Dr Sadia Nishat, also from the SIUT, presented the details of the notification issued by the Sindh government which directs and explains the lawful procedure and modalities of deceased organ donation.

“The notification has also defined the role of public and private sector hospitals regarding cases of brain death and coordination with the Sindh Human Organ Transplantation Authority, which is the regulatory body. A helpline has also been established at 0300-0064682,” she said.

Later, SIUT director Prof Adibul Hasan Rizvi talked about patients’ sufferings and factors hindering progress on the deceased organ donation programme and said a major reason had been media’s lack of interest in the subject.

“The number of patients on dialysis is rising and there is a desperate need to spread awareness on deceased organ donation,” he said.

Earlier, Dr Waseem Khan, a deceased donor programme coordinator, gave an overview of the programme at the SIUT and the progress made.

The event was also addressed by retired justice Majida Rizvi.

Published in Dawn, October 6th, 2019