leeanna.maharaj@guardian.co.tt
World Kidney Day is recognised on the second Thursday in March. It is set aside to raise awareness about kidney diseases and the people who live with them every day.
One of those people is 33-year-old Xavier Chung, a project engineer from Couva, whose life has long been shaped by kidney disease.
At just three years old, Chung was diagnosed with Vesicoureteral Reflux (VUR), a condition that causes urine to flow backwards from the bladder into the ureters and sometimes the kidneys.
Over the years, he underwent several procedures, but the condition kept returning.
“The doctor said if it doesn’t recur by the age of 16 or 17, then I’m fine. Approaching the age of 15, symptoms started to recur,” Chung said.
By the age of 18, he received devastating news.
“Eventually, the kidneys failed, and I went into full renal failure, where both of my kidneys were not functioning,” he stated.
Chung then had to balance dialysis with school life.
“I would have experienced more dialysis than I care to remember. Although the teachers were very accommodating when I had to leave school early to go and do dialysis. The downside is it cuts into your time. While you could go ahead and do your studies there, because they give you a table, you could study there, but it’s not the most comfortable environment because you’re in a chair and you’re connected to a machine. The best thing to do at that point is sleep,” Chung recalled.
Eventually, Chung needed a kidney transplant.
His uncle volunteered to donate a kidney, but after screening and tests, it was discovered that he too had renal failure.
Now searching for another donor, Chung’s parents turned to the media and made a public appeal. Help came from an unexpectedly close place.
His father’s cousin, Allison Carreira-John, saw the newspaper article and immediately reached out.
“We were getting desperate, and we didn’t really want to go through our entire family list and ask people. So we opted for the newspaper, and lo and behold, a family member did step forward. She would have read the article, and she didn’t know we were going through it to this extent, and she volunteered to donate her kidney,” he said.
The transplant gave Chung a second chance at life.
“I’m very grateful that she was able to go through that process. And we did get closer,” he expressed.
With his new chance at life, there was one simple thing he was looking forward to.
“The biggest upside for me would have been being able to go in the sea and take a full shower, because when you have a line on your chest that cannot get wet, even if they put a waterproof plaster, you still don’t want to risk it because the water could cause an infection and you don’t want an infection getting to a line that leads to your heart,” he shared.
Now, 15 years after his transplant, Chung knows that every day is significant.
“It’s a long time and it’s also scary because when doing the transplant they told me that usually a live kidney transplant lasts between ten and 15 years. However, it can go longer if you take care of it. So while I’m at that point, I do try to exercise. I do try to keep a healthy diet. I do try to manage stress as much as I can,” Chung explained.
Despite maintaining a healthy lifestyle, Chung says access to medication remains a concern.
“Now the biggest challenge would be medication. There were moments when I could not get the medication from the hospital and it’s not cheap to purchase. If I had to buy my medication it would cost me more to buy medication than to eat for the month. So the medication is not cheap and those moments when I may have had to buy it… it takes a while to recover after spending so much to get it. That was the biggest challenge, I believe,” Chung said.
He explained that because demand for transplant medication is relatively low, suppliers may not keep it readily available. As a result, shortages can occur about once a year, and importing the drug can take two to three weeks.
