By Shamar Meusa
AS the world observes Kidney Awareness Month, several dialysis patients and those who have received kidney transplants have said that they have encountered many difficulties, including changes to their lifestyle and the high cost of treatment.

At a press conference held on Friday at the Georgetown Public Hospital Corporation (GPHC), some of these patients shared their experiences as part of the hospital’s awareness efforts.

Twenty-six-year-old Malika Dey, who received her transplant two years ago, recalled that she found out that she had issues with her kidney in August 2018. She said after being diagnosed with kidney failure she didn’t immediately start dialysis treatment.

“When I did make up my mind it was too late. According to my family, I had a seizure. I end up at accident and emergency. I got admitted and I had to start emergency dialysis,” she said, adding that this occurred some months later.

After she regained consciousness, Dey stated that she was then informed that she would need to be on dialysis until such time that she could have a transplant done. Her father was her donor and she underwent the transplant procedure in September 2019.

She said since then, she has been healthy and strong with no complications. To this end, she noted that she had to make drastic lifestyle changes, especially to her diet.

“Well stuff changed a lot like with your diet. I don’t know about the other transplant patients, but I don’t do a lot of stuff that I used to do before. I take care of my health because being on dialysis isn’t anything easy,” she said.

Meanwhile, 33-year-old Kiran Hardyal who was the hospital’s first kidney-transplant patient, having undergone the surgery in 2015, said he is doing well.

He told members of the media that he found out that he had kidney failure in 2014 and at that time doctors tried to see what could have possibly been done to reverse the kidney failure. As a result, he started dialysis in January 2015.

He too stated that being on dialysis was not an easy journey and as such, he encouraged patients who are currently on dialysis to keep their heads up.

“There is light at the end of the tunnel and the transplant is possibly the only reason you could get a better health, so there’s no point in giving up when you go through so much dialysis,” he said.

Hardyal added that he had to adhere to the doctors’ orders as it relates to certain lifestyle changes in order to stay healthy after receiving the new kidney.

He emphasised that the most important thing would be to have a positive mindset when one has reached the stage where there is need for a kidney transplant.

At the conference, there were also two other patients who have not yet had kidney transplants, but are currently on dialysis.

Sixteen-year-old Adaicia Semple started dialysis in August 2021, and noted that her life has not changed much, as previously she had issues with another illness, lupus.

The teen revealed that symptoms of kidney failure are similar to those associated with lupus.

“Basically, it’s the same symptoms that I was having before that I’m having now. It’s just that the symptoms increased, for example, the headaches; they’re worse now and the bad feelings and the weakness,” she said.

Semple revealed that dialysis is difficult and further it is quite costly as she and her mom have to travel frequently from their West Coast Berbice home for her to receive the treatment.

Her mom, Ulex Semple, said that they have a meeting with the doctors coming up and as such, she hopes that there is a positive outcome as they have been waiting for quite some time for a kidney transplant.

“We’re waiting long to get her transplant to do because it’s not easy every day with her,” she said, adding that her daughter keeps complaining about different issues with her bones.

Additionally, 39-year-old Gilian Bahadur began dialysis in November 2021. She said that at first the process was not that bad, but it is now affecting her physically.

The mother of three stated that in January 2020 she noticed that her body was swelling, which prompted her to visit the hospital for a checkup. It was then that she discovered that her kidney was inflamed.

Bahadur added that the dialysis treatment is very costly and as she is currently unemployed, she needs assistance to pay for it. She noted that she gets the dialysis treatment done in New Amsterdam three times a week.

She called on government to assist dialysis patients to cover the cost of their treatment.

“The dialysis is really expensive and you know [when] you not working, you need assistance and I think the government should at least give it to us free. I don’t see but I talk to patients at our centre in Berbice that[sic] say it’s really expensive for them and they’re not working. I’m not talking on my behalf alone but in general, it’s really expensive to do dialysis,” she said.

It is expected that dialysis patients will soon benefit from the $180M that was approved by the National Assembly in February.

“…Even as these investments are being advanced, this country currently has hundreds of persons undergoing ongoing treatment for life-threatening conditions. A prime example is the number of persons currently receiving dialysis treatment, many of whom are young people still in the prime of their lives, but oftentimes struggling to meet the cost of their treatment. To this end, we will introduce a Dialysis Support Programme, under which we will finance up to $600,000 per annum worth of dialysis treatment for each and every dialysis patient in Guyana. This programme will provide much-needed assistance to almost 300 persons at a cost of $180 million,” Senior Minister in the Office of the President with responsibility for Finance, Dr Ashni Singh, had said during his 2022 budget presentation.