When our caregiver warrior, Virendra Singhal showed immense generosity in his moment of grief.
Mayank Singhal was diagnosed with CKD as a result of Alport Syndrome at a young age, when he was happy and carefree, and full of dreams for a bright future and a career. The diagnosis and treatment that followed put an end to his dreams and hopes. Mayank had to start peritoneal dialysis in July 2015, eight years after his diagnosis. This was the best option when facilities for hemodialysis were limited in the hilly region in Dehradun where he lived, and when initial attempts by doctors to create a fistula for him failed.
In Oct 2019, following a peritonitis infection that was incurable despite a long course of treatment under hospitalization, left with no other option, Mayank had to move to hemodialysis. He began dialysis with an AV fistula. But the vein got blocked in July 2020. The doctors attempted to create a second access in both his arms, but this became a challenge, just as it had been when he initially started dialysis. Taking the only viable course to overcome this impasse, a temporary catheter was created in his leg. Unfortunately, this lasted only for fifteen days. With no alternate means for dialysis, Mayank breathed his last on 30th July 2020.
Foreseeing the end, Mayank’s father Virendra Kumar Singhal took the initiative to contact the Eye Bank with assistance from the nephrologists at the hospital to get the process for eye donation under way. The eye bank acted swiftly. A team checked his eyes and was satisfied that the cornea was fit to be donated.
After Mayank was declared dead, the attending Nephrologist informed the Eye Bank. A declaration /affidavit expressing intention and willingness was signed by the parents. The team from the Eye Bank promptly carried out the process of retrieval of the cornea and tissues.
Ever since his treatment started, Mayank’s family has struggled with the mounting costs. Mayank was registered under Ayushman during his period of peritoneal dialysis, but at that time, this government scheme extended only to hospitalized patients. By the time the Government passed an order for “free peritoneal dialysis” for Ayushman beneficiaries, Mayank had started hemodialysis. The partial coverage of his hospital expenses by Ayushman was a small relief, while the rest of it had to be self-financed. He spent his final days in a Government approved private hospital run by a religious trust. The hospital provides care for people who are registered with Employee State Insurance, ECGS and Ayushman.
As a donor, Virendra Kumar Singhal now urges people affected by kidney disease to register for eye donation. As KWF’s state coordinator of Uttarakhand, he has been an advocate for the cause of kidney patients’ welfare and has been working for the improvement of existing kidney care facilities in his state. He had the fortitude to rise above his personal grief at a crucial moment to carry out the noble act of donating his son’s eyes. He saw the chance to restore sight to two people in dire need as an opportunity not to be missed.
Currently, dialysis facilities are available at a few private hospitals, besides the Government Doon Hospital and a centre run by Nephroplus at the Coronation Hospital in Dehradun.
Virendra Kumar was honoured by Shri Mahant Indiresh Hospital Eye Donation Centre, Dehradun, with a citation acknowledging his humanitarian gesture. Mayank himself would surely have been proud of his father’s deed.
(Read Mayank Singhal’s story in The Kidney Warriors)