Life for Koye Edwards was drastically changed when he was diagnosed with renal failure. Seven years later, the 36-year-old has adapted and has made it his mandate to educate Jamaicans about the disease — one which he believes is not spoken of enough.

At 28, Edwards treated himself to a meal at a fast food restaurant which caused him to fall ill and realise that his body wasn’t at its optimum as he thought.

“On pay day November 2008, I decided to treat myself; double whopper with cheese and bacon, go large on the drink and fries, this turned out to be the straw that broke the proverbial camel’s back. That night I suffered with muscle cramps over my entire body. Next morning greeted me with vomiting and shortness of breath,” he outlined in his biography, which stated he was referred to a nephrologist following a myriad of tests.

The tests he said revealed that his kidneys were a quarter of the size they should have been. He was then diagnosed to be suffering from End Stage Renal Disease (ESRD) — chronic kidney failure.

Naive at the time, Edwards hoped the illness was something he could overcome with an injection or a few pills. But it wasn’t.

“I think for everybody initially it’s bad because it is a shock to your system; so how your system handles it will have to learn to adapt to this new thing happening. That is why there is vomiting on the machines and there is passing out and waking up hours after; so it’s rough but after your body gets accustomed to it, you find that you can live,” he told the Jamaica Observer.

At $8,000 per treatment in the private sector, Edwards said that it however became unattainable and difficult to find $64,000 monthly for treatment, as he lost his job soon after being diagnosed.

“While paying for dialysis it was hard to do it every week, so you found that I was in and out of dialysis, which caused some amount of swelling and shortness of breath and things like that,” he noted, explaining his gratitude for the CHASE Fund which assisted him twice in one year.

The turnaround

For Edwards, the three years seeking treatment privately became lonely and increased his desire for a turnaround in his life.

“I remember distinctively, I was on the ward, it was a Sunday and my mother would carry Sunday dinner. It was the only day someone would come and look for me, because my brother is busy, my friends say they’re busy, everybody busy,” Edwards said.

“So I was there alone on the Sunday, rain fell, my mother couldn’t come and I was alone, no Sunday dinner, I had to eat the hospital food and nobody had come to look for me, I think I was in there for two weeks and this is the second week and nobody, and I was on my back,” he lamented.

This yearning for a change was satisfied when he turned to God for help, and was shortly enlisted in the government sponsored programme to receive dialysis treatment.

“I just prayed and said: ‘bwoy God if this going to pass the ceiling and you hear it then I can’t do nothing more, I’m broken now, I can’t go to dialysis I’m going to have to wait until Wednesday (for emergency treatment), there’s nobody here, me need a turnaround’,” Edwards said. “The Tuesday morning I got a call from here (Spanish Town Hospital) to say that you can start coming to dialysis today and your shift is Tuesdays and Fridays, just like that,” he continued.

Now receiving regular dialysis, Edwards’ health has improved.

Katie Hoo Dialysis Centre

He sees himself as an advocate for persons suffering from the disease in worse situations than himself and is motivated to help. Edwards and other patients treated at the dialysis centre in Spanish Town Hospital, have worked to improve what has now become home.

“We have an organisation here called Friends of the Katie Hoo Dialysis Centre that we raise funds and did the painting; there were ACs broken down in the unit, we replaced them. We recently put in partitions to kind of trap that AC air because the machines really depend on AC. We are looking to change drapes throughout the place, you know so we trying to do some things,” he told the Sunday Observer.

Still determined to assist the organisation is working to raise funds to pay for the removal of the parathyroid glands — a recommendation for most patients. The glands, according to Edwards emit a hormone that should regulate calcium in the body but in patients with renal failure increase in size and causes either calcium deposits on the bones or calcium extraction which leads to brittle bones.

The organisation’s next project will be a health expo in partnership with the Kidney Support Foundation of Jamaica and Privy events at the Buzzer’s Complex in Portmore.

“It’s a health and wealth expo, so we have the banks and the loan companies and others set up booths. So we are renting booth space for that. We have our different packages and proposals that we sending out,” he explained.

The organisation also hopes to host a gospel concert in Easter to raise funds to help patients.

The disabling disease

Edwards believes that more should be done to assist renal patients as the disease can be disabling.

“On bad days I have cramps, cramps in my calves, my thighs and toe areas and the cramps will linger for a day so maybe like the next evening you start feeling you not getting cramps anymore,” he said.

His view is that persons with the disease should be categorised and protected under the disabled community as they are often fired from their jobs soon after being diagnosed.

“From what I know I don’t believe there is a structure provided for us but it (the disease) is disabling; it may not look like it but once you are diagnosed with renal failure there isn’t many places that you can work. Most of us have relegated to entrepreneurship to find a way to work from home,” he told the Sunday Observer.

Others, who were entrepreneurs before diagnosis have had to stop because of their debilitated health but according to Edwards need assistance and are willing to contribute.

“There are persons who can work, who could contribute, who could do business like I am, able to move around, get around but there aren’t many venues available for us like that,” he noted.

“There are patients who is other patients sponsor their lunches. They either pool together or patients who have big children who are taking care of them have money and say ‘I’ll buy your lunch today’ but there are patients who are not able to, just the fare to come here is all they could muster up, so it is hard,” he said.

Renal Treatment in Jamaica

Renal failure can be treated through a kidney transplant or dialysis — the more popular in the Caribbean. According to an article titled “Renal disease in the Caribbean: the disease of the past, present and future” published three years ago in the West Indian Medical Journal, the initiation of haemodialysis in the Caribbean began in Jamaica in early 1970 and the first dialysis unit opened in 1973.

The number of units in the island has grown immensely since, but according to Edwards there are still many persons with the disease not being treated as often as they should.

“The numbers are great and the pain is real and we need Jamaica to understand that there is a sector of Jamaica, because it’s not just Spanish Town, there is a unit at KPH, there’s a unit at the University [Hospital], there’s a unit at the Cornwall Regional and all of these units are only the government sponsored there are the private sponsored units, where people are doing dialysis there now and barely making it, barely being able to,” he said.

“And then there is a whole host of persons who are dying waiting for here (to be enlisted in government sponsored programme) because they can’t pay for it at all. They can’t even make that first dialysis. Those persons are dying on a monthly basis, they can’t make even one payment to do one dialysis,” he continued.

These patients, he said, go to the government sponsored units for emergency treatment on a Wednesday, sometimes once monthly despite the requirement to be dialysed at least twice weekly.

“Emergency case half the time…they don’t understand what you saying, they are out of it, they don’t even respond to you but they’re breathing and that’s basically it and that’s what the nurses are working with,” he explained.

When asked of his ideal view for renal treatment in the island, Edwards said he would like to see an increase in the number of machines at government sponsored units to accommodate the myriad of persons waiting to be able to be treated regularly.

“The ideal that I would like to see is the legislation changed so that we can have donors committing to offering their kidneys while they are living and I would like to see the government take control of the transplant procedure and the after care,” he noted.

“I’m hoping to get to a first world country, UK possibly so that I can increase my chances to getting a kidney. But while I’m here on dialysis, my focus is helping the patients here, making it easier for the patients to access some of the care that they need,” he said. “I mean its government sponsored so you find that sometimes even alcohol we don’t have a round there, they don’t have the gauze packs that they need to strap these (the blood vessels) down when we going to do the dialysis… is nurses know that sometimes there’s a shortage and they stash away a little piece or we as patients we’ll keep gauze and some patients will bring their own alcohol,” he told the Sunday Observer.

According to Edwards, currently kidney transplants, though the better treatment, are rarely done in Jamaica and is not very plausible as there are a lot of requirements.

“They don’t harvest kidneys from dead people so you’ll have to find it from a living donor; and then usually they want to do it from a family member and then the family member has to be 95 per cent healthy, no hypertension, no diabetes, because those persons are prone to kidney failure so the possibilities keep cutting down with these things,” he said, explaining that in the US and the UK donors indicate on their licences whether or not they are willing to donate their organs when they die.

He said that another requirement to receive treatment should you pass these criteria, is to prove you will be able to finance after care — a medication which costs up to $45,000 that must be taken monthly to prevent the body from rejecting the kidney.

“Not everybody will be able to prove that you can find that every month. Remember you might be a higgler, you might be self-employed so you can’t definitely prove that you’re going to make that money, plus what you need to maintain your life. We are still living people, rents to pay and children to feed and send to school, so to say I can find $40,000 a month in addition to my other bills, it’s not easy,” he lamented.

Despite the different issue he grapples with, Edwards believes that there is still a lot for him to do in this lifetime. As music director at the Diamond Acres Seventh Day Adventist Church, he said he hopes to share his testimony of fighting against the odds through music and hopes to be the mouthpiece for patients who may be unable to articulate their struggles to Jamaica.