I’m dying, please save my life

“They say I don’t have too long again,” said 20-year-old Keston Williams who was diagnosed with Focal Segmental Glomerulosclerosis (FSGS) in 2001 and end stage renal failure last month. Keston is also severely anaemic and hypertensive. His chances of survival now depend on getting dialysis. He was brought to Sunday Newsday last Thursday by another kidney failure patient Innis Toussaint. But unlike Toussaint, he cannot afford dialysis and is appealing for assistance from Health Minister John Rahael. “I feel bad.  I don’t work anywhere. Right now I feeling really weak. I can’t move around,” Keston said in barely audible voice. His father is unemployed.

Keston was referred to the Eric Williams Medical Sciences Complex from Port-of-Spain General Hospital in 2000 for investigation of Penal dysfunction and Proteinuria. Two kidney tests were done and his final diagnosis was FSGS. Although he was treated with Steroids and Imuran, his disease progressed and is now at end stage renal failure. As a patient from PoSGH, Keston can receive kidney dialysis from this facility but it is unavailable. The Nephrologist at EWMSC has written to Minister Rahael appealing for his intervention to get Keston treatment. Speaking on behalf of Keston, Toussaint said there is no nephrologist at PoSGH and the haemodialysis unit is not accepting any new patients. “I want to send a message to the Minister to look after the PoSGH dialysis unit. People cannot afford to pay the John Hayes Kidney Foundation or go to the Seventh Day Adventist Hospital. They are just letting the place fall apart, people are dying,” Toussaint said. He is paying approximately $800 for dialysis at EWMSC clinic. Toussaint, who has been dialysing for the past 11 years, is willing to give up one of his dialysis days and hopes someone else could possibly do the same.

“We want the Minister and Government to know many people need help. What about the Human Tissue Transplant Act? They said they will do something this month but nothing has been said or done about it, we need it badly.” Last month, former Health Minister Colm Imbert said the regulations for the Act were with the Legislative Review Committee. Without the regulations the Act cannot be implemented. FSGS is a kidney disorder that results in fibroids and scarring in the kidney.  The cause is unknown but some cases result from reflux nephropathy. The clinical manifestation of this disorder is nephrotic syndrome, whose symptoms include weight gain, swelling, hypertension and foamy urine. One-half of the patients diagnosed with FSGS develop chronic renal failure within ten years of diagnosis. At end stage renal failure the patient has inadequate renal function to support life and their survival depends on dialysis—kidney or peritoneal (a solution is run through a tube into the thin tissue that lines the cavity of the abdomen).