FOR most persons living with kidney disease, the options are limited; the popular options include choosing to undergo the difficult and often tedious treatment of dialysis or undergoing surgery for a kidney transplant if they have found a suitable donor. For those who decide against the transplant, life can be very difficult, and the true story of what their day to day life entails are often times unknown.
Leonardo Butcher was diagnosed with polycystic kidney disease about three years ago when he was told that there are cysts growing on his kidneys and has been on dialysis for a year.
“Medical professionals told me that I developed the disease hereditarily, and my chances could have possibly increased based on my diet and lifestyle,” Butcher said.
Butcher added that it was recommended that he be placed on dialysis two times per week- where each session costs about GY$12,000.
The father of 11 describes his illness as being very burdensome on his family and those around him because some days he cannot even stand up or go to the toilet by himself. Butcher said, “Life with kidney disease varies from person to person. For me, while others may be able to perform simple tasks, I am unable to even lift or carry a bottle of water.”
He explained that the illness is often misinterpreted because some days he feels good, while on others he is so sick he is unable to do anything for himself. Butcher told this newspaper that he cannot even brush his teeth on his own and he cannot help it because the effects of dialysis take a toll on his body and he is often left weak, depressed, nauseated and feeling very ill; side effects which come as a result of using certain prescribed medications.
In addition, Butcher suffers from an ailment in which there is abnormal growth of his bones and about three weeks ago he began walking with crutches since he is unable due to complications in his hip. He related that even using the toilet is a challenge for him as he cannot get past the crouching position because his arms are very weak and cannot support his body weight.
Butcher, a Bank of Guyana employee said that as a result of dialysis his muscles are degenerating and the suffering of persons with kidney disease gets worse when there is no proper facility where they can go for treatment/advice and care.
He explained that one can only benefit from free two-hour dialysis per sitting once they are an in-patient at the Georgetown Public Hospital Corporation (GPHC) and that walk-ins are not welcome. As such, those who cannot afford to pay for dialysis are left in a quandary.
The 55-year-old Sophia resident stated that sadly, a lot of people are dying from kidney disease because they do not have anywhere to go for assistance since three hours per sitting for dialysis is recommended per patient and many cannot afford to do so every week.
Butcher along with another, Colvin Luthers, who also suffers from kidney disease, are in the process of mobilising others to form an organisation for similar persons, which will serve as a mouthpiece for persons living with similar conditions and advocate for better care/treatment and awareness.
“Kidney impairment patients cannot eat as they should because taking dialysis basically destroys the body which causes you to become very weak and this often times leads to their death,” he said.
Butcher is therefore on a strict diet and pointed out that ignorance is a contributing factor which leads many persons to self-medicate with painkillers, while they are unaware of the leading causes of the disease such as diabetes and hypertension.
With the limited facilities available locally, Luthers went to China for a stem cell treatment but is back in Guyana where he is receiving dialysis at Woodlands Hospital three times per week.
He was diagnosed with End-Stage Renal Failure (ESRD) five years ago but was living out of Guyana for 16 years, as such, he was not contributing to National Insurance Scheme (NIS). On account of his illness, Luthers needs regular treatment of dialysis among other medical care, the costs of which he has to bear on his own.
“Presently there are not much services available to kidney patients locally but the government offers a one-off financial assistance of $340,000 per patient for 28 sessions of dialysis and after that it is left on that patient to find money to continue care and treatment,” said Luthers, a resident of South Ruimveldt.
He pointed out that during his visits to hospitals for dialysis he encountered men, women and child who cannot afford dialysis on a regular basis as recommended by doctors which is three hours per session, three times a week.
“Some people have worked most of their life and cannot afford to pay for dialysis because it is expensive but it is necessary for their survival,” Luthers said.
He added that is why they are seeking to establish an organisation among themselves to lobby strongly for kidney patients to get more assistance, care and treatment in Guyana.
Luthers said with kidney transplants there is a 50/50 chance of survival and with proper treatment and care after surgery one can live healthily after the procedure.
He noted that the suffering of persons living with kidney disease is unspeakable and very traumatic on the body but with proper care and treatment one can enjoy long life.
Luthers, presently, is battling a catheter infection but he is hopeful he will overcome it in due time but stated that kidney patients need to be in the know about the disease and urged them to do some research.