Kidney disease patient and transplant recipient Steve Carrington has called for the illness to be better represented in the media as he feels other health issues take an unfair precedent
The retired business owner said that chronic kidney disease (CKD) does not receive the exposure it needs despite it affecting millions of people in Western countries.
The 58-year-old from Port Talbot added: “The modern world should be made aware how life-threatening CKD is and how it can kill you quicker than many cancers.”
For many there are no signs of illness until the latter stages meaning that, far too often, the disease is spotted when end-stage renal failure – a complete dysfunction of the kidneys – can soon follow.
Steve, who served in the Royal Navy, said that it is vital there is greater exposure so more people can be diagnosed at an earlier stage – as he was.
“I had a heart blip,” he added. “It was nothing serious but enough to have me hospitalised. It was then I was told I had only 30% kidney function.”
For many of those diagnosed, it is often routine testing which picks up the disease.
Steve said that doctors tried their best to keep his kidneys functioning properly but unfortunately they declined rapidly once they hit 16-17 percent filtration rate.
Steve underwent peritoneal dialysis (PD) – an alternative to direct blood dialysis, or haemodialysis, which removes harmful toxins directly from the bloodstream which build up as a result of the kidneys failing.
In PD, the patient’s peritoneal cavity is filled with a solution that absorbs the build-up. After some time the solution is drained, removing the harmful substances.
Steve said: “I thought having that pipe put in my abdomen was the worst experience of my life but changing the bag four times a day and carrying around all that fluid in my gut was agonising.”
After years of daily torment, Steve said he could no longer deal with the strains of PD.
He added: “One day, I could take no more,” he adds. “I marched into the kidney outpatient’s clinic and demanded they rip the pipe out of me.”
The next week he began haemodialysis where he would sit wired to a blood-filtering machine three times a week with each session taking four hours. “Sure I was constantly tired,” Steve adds. “But I was thankful to be alive.”
“Sure, I was constantly tired but I was thankful to be alive.”
After years of haemodialysis, Steve received the call that all end-stage renal patients long to hear.
“At 5.30 am, the phone rang,” he said. “They had a cadaveric kidney that matched up with me.
“I had the transplant. Six weeks of uncomfortable hell followed but it was worth it. Of course I still get tired but at least I’m off the dialysis.”
Steve said that he is now relatively healthy and happy with life in spite of the risk that his kidney function could easily deteriorate again.
He added:“After all, a kidney transplant is nothing but a portable dialysis machine. It can go wrong at any moment.”
However Steve said that he worries the general public are are not well enough aware of the disease which greatly affects his life.
He added: “How often do you see children with cancer on the television and in newspapers? All the time. But how often do you see young children or babies on dialysis?
“We need people to open their eyes about CKD.”
Retired nurse and fellow CKD patient Jill Morris echoed Steve’s thoughts.
The 56-year-old from Suffolk fluctuates between stage 4 and stage 5 of the disease, and narrowly avoided the need for a transplant which her sister planned to donate to her.
She said she understood why many diseases such as cancer receive the attention they do but feels more needs to be done to educate people of all ages of the dangers of kidney disease.
Jill added: “I feel the public are not aware of the long term effects of CKD. It needs more publicity.
“I don’t think they realise it is a death sentence much the same as cancer and heart disease, especially as it increases your chance of heart attack, stroke and other circulatory problems.”