Expectation and hope………..sometimes hope bordering on despair whether there is someone out there who would be the “right person” to help her overcome a life-threatening malaise that she has been grappling with since she was just 16 years old.
Lilanthi Wickramasinghe, now 42, is awaiting a matching kidney (A+), while undergoing dialysis twice a week, like a prayer at the Sri Jayewardenepura General Hospital. When we meet Lilanthi at her home in Mawiththra, off Piliyandala, the only outward signs of her ailment, are her knotted and gnarled veins.
There is, however, a glimmer of hope, not only for Lilanthi but also for the thousands of other men, women and children struggling to survive until a right match is found, after being diagnosed with chronic kidney disease (CKD).
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| Lilanthi: The search is on for a kidney. |
For a National Organ Donor Programme will be launched by Health Minister Nimal Siripala de Silva on March 21 at Anuradhapura.
Such a donor programme is essential because there are over 8,000 end-stage renal failure patients in the country, with about 800 new patients joining this list every year, explained Consultant Nephrologist Dr. Chula Herath of the Sri Jayewardenepura General Hospital. “Ten percent of adults worldover have unrecognised kidney disease.”
Tragically, The Sunday Times understands that 8 out of 10 such patients die due to lack of resources to undergo dialysis -- purification of blood needed for them as their kidneys no longer perform this task -- or donors for organ transplants.
Now most of these patients are dependent on the goodwill of a relative who is willing to donate a kidney or a non-relative they can secure through appeals in the media or by word of mouth, it is learnt.
A National Organ Donor Programme will also help cut out corruption such as kidney sales, stressed Dr. Herath, referring to a scandal in India where in fact a doctor even went to jail for organizing such sales.
Lilanthi’s life story is similar to most people who are suffering from CKD. It started when she was 16 and still attending school in Negombo – fever at least once a month, back aches, difficulty in passing urine and sometimes a reddish tint in the urine. It was a routine of seeing the doctor and swallowing medication.
In 1987 Lilanthi was informed that 85% of both her kidneys were narak wela (spoilt). Her sweetheart, Ajith, even on being told of her situation married her in 1991, and has been not only her companion but also her carer not allowing her to dwell on her condition and get depressed but keeping her in a positive frame of mind.
Ajith has given up his job in the printing sector five months ago to concentrate on finding her a kidney. “We have to have the transplant soon not only because of her health but also due to the rapid dwindling of our finances,” he says, explaining that they need about Rs. 38,000 a month for the dialysis, excluding transport costs to and from the hospital.
This would be Lilanthi’s second transplant. In 1997, when her kidney function dropped to 10%, there was a frantic search for a donor. Lilanthi’s mother came forward to share a kidney and in 2000, the transplant was performed in a hospital in Chennai. However, due to her mother’s age, she was 58 at that time, that kidney was functioning only at 35%.
There was a joyous moment in their lives in 2001 when Lilanthi became pregnant. But hopes of motherhood had to be given up due to her ailment, she says, while unshed tears glisten at the corner of her eyes.
In early 2004, both Ajith and Lilanthi realized once again that they were not done with her dilemma, when the functioning of the transplanted kidney became reduced.Now the search is on for a kidney.
The Donor Programme: What it’s all about
The National Organ Donor Programme, launched by the Kidney Transplant Support Foundation (KTSF) founded by Ajit F. Perera in collaboration with the National Kidney Foundation of Sri Lanka headed by Dr. A.M.L. Beligaswatte, a former Director-General of Health Services, will provide patients without donors an opportunity of getting a kidney from a non-related, anonymous donor.
It will enable altruistic persons from across the country to donate a kidney while alive, as well as others to pledge one or both kidneys to be harvested when they die, said Mr. Perera. “The programme is unique because there is no other in the state or private sectors and patients with renal failure are left to their own devices to find a kidney.”
The donor programme hopes to create a greater availability of organs for needy patients, saving many lives and also easing the pressure on the existing dialysis system. Although more than 1,000 dialysis machines are needed, Sri Lanka has fewer than 200 in both the state and private sectors, he pointed out.
Initially, a website with a donor database has been developed to enable potential donors to register themselves by filling a form and registering at 20 main hospitals with computers and internet facilities. This facility is to be expanded to cover online registrations. Later donors will also be able to register when applying for driving licences at the Department of Motor Traffic or identity cards under a new project by the Department of Registrations of Persons. Thereafter, both the driving licence and the ID of donors will have heart-shaped icons, he said.
Explaining how it will work, Mr. Perera said once the database is launched, no sooner a “live” donor or a donor who prematurely becomes “eligible” for harvesting a kidney due to becoming “brain dead” after an accident is found, the hospital staff will enter the data into the system and an immediate matching of blood and HLA typing with patients on the database needing a transplant will be done.
Once the “best match” is identified the relevant teams would be alerted.
The computer systems will be introduced with the support of Information & Communication Technology Agency of Sri Lanka (ICTA), while M/s Golden Key Software Solutions have already developed the web-based database free of charge.
What is renal failure?
When the kidneys fail to remove the waste from a person’s body and purify the blood, it is called renal or kidney failure. Those suffering from renal failure fall into two categories – ‘acute’ renal failure and ‘chronic’ renal failure.
While patients with ‘acute’ renal failure require dialysis machine only for a short period as the kidney rejuvenates itself, those with ‘chronic’ renal failure require haemodialysis up to thrice a week for life or until they undergo a kidney transplant.
Renal failure has now been identified as a significant health issue not only causing disability but also death and mostly among people who are at the peak of their lives, being breadwinners for their families. |
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