Anna-Lisa Paul
Diagnosed with renal failure one year after visiting a private physician when he began feeling listless and fatigued, Peter Raphael is still unable to comprehend why it happened to him as he believes in moderation and maintaining a healthy lifestyle.
The 43-year-old Freeport man, who is unmarried and has no children, said, "It came all of a sudden. I was living a healthy, normal life prior to being diagnosed."
The Ministry of Agriculture employee revealed that about one month before he was diagnosed, "I started to feel tired a lot more often when doing simple chores and for me, that was unusual."
Raphael went to a private doctor and was given an urgent referral to the Eric Williams Medical Sciences Complex (EWMSC) that same day. At the EWMSC he discovered his blood count was very low and as a result, he was admitted while a series of tests were carried out during May/June last year.
Informed he had end-stage renal failure and would have to start dialysis immediately, Raphael was left in shock and disbelief.
He said, "I had to do dialysis the same day but I was lucky because I had the support of family and friends. A lot of people don't have that but I had people who stood with me which made it easier to get through."
Raphael laughed as he said his sister Jennifer, a pharmacist, immediately took charge after the diagnosis and began making arrangements with the doctor to donate one of her kidneys "without even discussing it with me first!"
He said, "I didn't really have much of a choice. I overheard her talking with the doctors saying she was going to donate a kidney and asking what to do next. I never wanted to burden anyone. I was determined to sort this out on my own."
Raphael said he actually wanted to spare his loved ones the worry, as well as the emotional and financial stress that came with caring for someone suffering from renal failure.
As a result of Jennifer's decision to donate a kidney, Raphael did not end up on the public waiting list and underwent transplant surgery on April 24.
Post-surgery, Raphael said, "Everything is going well. I have been able to return to work just about one month ago but you have to be mindful that you may not be able to do certain things like before."
His regimen now includes a daily diet of anti-rejection medication and scheduled clinic visits at the EWMSC.
Reflecting on how he felt immediately after the surgery, Raphael described it as a bitter-sweet moment as he said, "There are so many people who get left behind in the Dialysis Unit and are not as fortunate as I was to get a donor."
He said this has become the driving force behind his efforts to get people to register with the organ donor programme in T&T.
Raphael said greater public education was needed to promote the programme which remains largely unknown. He urged people to visit the EWMSC to get information and register as it could save a life.
He said, "Indirectly, they may be saving many more because when a person is diagnosed with kidney failure, it does not affect that person alone as their next of kin will be impacted from having to care for them."
Donating from a place of love
Declaring that she would do it all over again, Jennifer said the donation of a kidney came from a place of love and familial relations.
While a normal adult male's blood count should be around 14, she said Raphael's at the time of diagnosis was around four.
Imagining a number of scenarios in her head, Jennifer said, "I wasn't thinking dialysis at all."
Shocked after she learned of the diagnosis as Raphael had always been healthy, Jennifer said, "I felt like a ton of bricks hit me because I wasn't really expecting that."
Galvanised to act after she was told Raphael had to undergo dialysis three times weekly, Jennifer admitted to alternately crying and questioning why this was happening to her brother.
The 44-year-old admitted it had been a challenging time for the entire family, but they managed to get through it.
She too appealed to people to seek information and give a helping hand to others in similar situations.
Jennifer said, "It was hard for me to watch him doing dialysis as his blood pressure would spike during treatment and then drop dangerously low after, sometimes he would not be able to leave right away. It was just everything that made me act.
"Seeing him now brings me a feeling of joy, knowing he got a new lease on life and I am also living a normal life."
She became emotional as she recounted, "He messaged me after the surgery and said thanks for the sacrifice."
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$68 M per year on dialysis—officials concerned about the increase in kidney sufferers
With the increase of diabetes and kidney disease in T&T, the number of people currently on dialysis is growing at a rapid rate.
Director of the National Organ Transplant Unit (NOTU) Dr Vishal Jaikaransingh said this meant the number of people waiting on kidney transplants was also increasing.
Since the start of the programme in January 2006, Jaikaransingh confirmed over 175 kidney transplants had been successfully completed.
Meanwhile, the Kidney Recipient Support Group of T&T (KRSGOTT)—an NGO established in 2006—has taken on a more aggressive approach to fulfil its mission to create and foster an awareness of kidney disease by providing voluntary services through outreach programmes and counselling.
Transplant Procurement Manager Hassina Mohammed was unable to say exactly how many people in T&T had been diagnosed with kidney failure/renal disease as she said no audit has ever been done.
However, she added, "Definitely, the numbers are increasing and we can say that because the numbers of people who are being diagnosed with high blood pressure and diabetes are increasing."
Indicating those two lifestyle diseases were the main contributory factors to kidney failure, Mohammed said in 2014 up to 1,800 people were said to be accessing dialysis, with a further 80 to 90 people awaiting treatment.
She said on average, this figure would have increased by 100 people per year.
It was estimated that the Ministry of Health spends close to $68 million per year on the provision of dialysis to patients both in the public and private health systems.
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How to become an organ donor
Being an organ donor means you have agreed to donate your body’s organs when you die, either by natural causes or in a tragic accident.
There is no charge to either the organ donor or recipient under the Ministry of Health's National Organ Transplant Programme (NOTP).
The NOTP was established in January 2006 with a mandate to facilitate the safe and equitable transplantation of organs and tissue to patients living with organ failure in accordance with internationally acceptable standards.
While it is illegal to sell organs in T&T, recipients for deceased donors are chosen through a matching system which selects and matches people based on compatibility criteria.
This includes blood group, organ size, serology status, urgency, and waiting time.
Organ donation is similar to surgery and does not result in any disfigurement to the donors’ body.
Like surgery, all incisions are closed and people can have an open casket funeral.
Anyone above the age of 18 can choose to be a donor whereas people under 18 years require the consent of a parent or guardian.
The Staff at the National Organ Transplant Unit, Eric Williams Medical Sciences Complex operate Monday to Friday from 8 am to 4 pm.
Their telephone contacts are 662-7556 or 645-2640, Ext 2580 or 800-DONOR (3666).