— former kidney failure patient shares his story
IN human beings, the kidney plays a critical, lifesaving function of filtering out extremely toxic fluid, electrolytes and wastes produced by the body. As such, life with end-stage renal disease, or ‘kidney failure’, is an especially challenging one for those who suffer from the disease.
From dealing with persistent muscle ache, tiredness and continuous vomiting to dealing with weekly dialysis and anxiety of the financial burden it brings, staying strong and persevering during kidney failure is a physical, mental, emotional and financial challenge on those who bear the burden.
“Picture you waking up but your body isn’t waking up. Sometimes energy would be so low you can’t even open your eyelids. You don’t even have the energy and strength to even come off the bed,” said Richard Manpersaud, 33, as he describes what life was like for him during a period of two years when he lived with kidney failure.
Manpersaud, who is originally from Leguan, was diagnosed with kidney failure in 2016. At the time he was working as a gold miner in the interior regions, and originally thought he was suffering from malaria; however, subsequent tests would show it was much worse than he feared. Unable to function properly, he had to leave his job.
However, after almost two years of dealing with the illness and its associated challenges, Manpersaud was afforded a life changing kidney transplant, which was performed at the Georgetown Public Hospital Corporation (GPHC).
In celebration of World Kidney Day, which will be commemorated on March 10, Manpersaud sat down with the Guyana Chronicle to share his story of going from a healthy life to living with kidney failure to finally being back to a somewhat normal life after his transplant.
Today, thanks to his kidney transplant, Manpersaud’s life has resumed to some level of normalcy. He has even been able to return to work, something that at one point he did not think would have ever been possible.
“In general for me life improved a lot after [the] kidney transplant. Now I am currently working again but I never really believed or thought that I would be able to go out back to work again,” he shared.
Manpersaud is still coming to grips with how normal his life can be because of the depth of how terrible his life once was. Some days, during his days of kidney failure, Manpersaud wondered how he would make it through.
“Sometimes your entire day you will be feeling upset. Sometimes you have nausea all day, you throw up all day because the toxins in your body does be so high,” he relates.
“You get muscle cramps. You have a lot of pain in your body, sometimes your muscle just seizes up while you’re walking. Your feet will swell, your belly swells. You don’t get any appetite to eat. Sometimes for a week you cannot eat a meal. You cannot sleep lying either, you start getting shortness of breath. So if you want to sleep you have to sleep in a sitting position. I went through that for nearly two years, it wasn’t a pleasant experience.”
But to ease the physical burdens of the disease would mean amplifying the financial burdens, primarily through dialysis and medication costs.
Dialysis is a process that substitutes the functions of the kidney by passing a person’s blood through a machine that flushes out the toxins and returns it to the body.
Patients suffering from kidney failure need between two to three dialysis sessions per week; with dialysis costing between $12,000 to $15,000 per session, the cost to patients ranges between $1.248 million to $2.34 million per annum.
Shortly after first being diagnosed with kidney failure in 2022, Manpersaud started dialysis and needed three sessions per week. The financial burden was instantly overwhelming.
“It cost $15,000 per session. Fortunately, I had some help from my entire family, which came together and helped me financially. But that only lasted for so long so I reached out to the government through the Ministry of Health to get some subsidy but at that time it was limited,” he explains.
During Manpersaud’s ailment the government was sponsoring only up to 40 dialysis sessions per year per patient; however, Manpersaud and many others like him, needed 156 sessions per year.
Though he is past his dialysis days, Manpersaud could not stop praising the government’s implementation of the Dialysis Support Programme, which was included in the 2022 Budget, and will give each patient up to $600,000 per annum towards their dialysis treatment.
Knowing the struggles of the financial burden of affording dialysis, Manpersaud is glad that others like him will now have greater relief. Manpersaud also commended the government for addressing the situation of shortages of key medications needed by dialysis patients. He shared that during his kidney failure days, in a scary occurrence, the GPHC ran out of the vital medication for patients with kidney failure.
“We had a medication shortage at GPHC, and myself and fellow kidney transplant patients went through a lot of stress. Some persons who were wealthy and had surplus they shared with others but we went through a tough time,” Manpersaud shared, still troubled by the memory of how dealing with a tough illness was unnecessarily made even harsher.
Fortunately, Manpersaud shared, since the change of government in 2020, there has been a more efficient management of medication at the GPHC.
“For the past two years we have had no problems with medication at the GPHC. We have the right amount and we’re very grateful for that,” he said.
Notwithstanding getting over the biggest hurdle, that is, getting a kidney transplant, it does not mean Manpersaud is entirely in the clear. Even after the transplant, patients must then be on continuous medication, for which there still remains a major financial burden
Manpersaud is grateful for life. His days of dialysis came to an end in 2018 when he underwent kidney transplant surgery. The positive change to his physical health was instantaneous.
“I felt good from day one. After kidney transplant, as soon as I woke up from surgery I already felt good, and the road to recovery that wasn’t tough at all. All that I had to wait to heal was my surgery wounds,” Manpersaud related.
“I would like to recommend to anybody if you have kidney failure and you have a donor go ahead and get your surgery done. The government is also helping you with the funds to do the cross-matching test and that is the biggest expense for the kidney transplant. Because transplant is free.”