JOEL JULIEN
Feroze Mohammed does not know whose kidney he has inside his body. However every day for almost three years Mohammed, 69, has thanked God for that anonymous organ donor.
Mohammed is one of only 26 people in T&T who has received a kidney from a deceased donor via the National Organ Transplant Unit (NOTU) of the Ministry of Health.
The NOTU has been in operation since 2006 and currently there are 101 people in this country awaiting kidney transplants. NOTU officials say "many others" have enquired about being on the donor waiting list but have not supplied all the necessary information.
According to the NOTU, approximately 500 nationals are in need of kidney transplants and that number grows by approximately 40 every year with a "very large number" of people dying annually while waiting.
Mohammed is a member the Kidney Recipients Support Group of T&T (KRSGTT). He and other members of the group are hoping that more people will become organ donors.
"It will literally save a life," he said.
Guardian Media Limited is today launching a campaign to promote public awareness about organ donation and transplant with the aim of encouraging citizens to augment this country's donor pool.
"People must first understand that God almighty created us with two organs in our body and that even though one is not functioning, one is sick or whatever it is, you can still live a natural healthy life with one kidney. As long as you are healthy and as long as you are living a good life you can donate a kidney," Mohammed said.
"I know some people, as soon as they hear about donating an organ, going under surgery, there is fear and they put the fear before the reality. If you continue living in fear then we all will not be able to survive, so my advice to people is that yes as long as you can donate a kidney you do not want more blessings than that. That is the best blessings one could get. Please connect with the National Organ Transplant Unit and they will take it over from there and they will make it easy for you it is a simple process," he said.
A second chance at life
Mohammed and three other members of the KRSGTT sat down with the Sunday Guardian this week to tell their stories.
Twenty five years ago, Mohammed was working in the sales department of Nestle T&T when he was diagnosed with an inherited disorder in which clusters of cysts developed within his kidneys. That changed his life.
"I was on the go busy, busy doing what I had to do. Then suddenly I started to feel very sick and I became very lethargic, tired, feeling very restless," he recalled.
"I had hypertension so that kept going up, climbing. It was not even going anywhere with medication at that point in time so it reached the stage that the doctor thought I should go to a nephrologist. And this is where it started. I visited the nephrologist, he analysed the situation and told me exactly what it was he discovered after doing all the tests and so on, that it is hereditary, polycystic kidney disease and there is no cure for that and you have to live with it," he said.
Mohammed said the most important thing was accepting that he had to live with the illness.
"The doctor told me two things would happen in my life, one I would be either under constant dialysis when it started or I would have to move to a kidney transplant. So said so done," he said.
Mohammed was put on dialysis but things eventually began to deteriorate and he needed to have a kidney transplant.
"Two or three of my relatives came forward to be donors but unfortunately they were not compatible with me. In one case they were almost there and in the last minute the medical professionals felt that it may not have been possible. It was a 50/50 situation and they said 'listen it is better no than yes'," he said.
"I registered on the list at the National Organ Transplant Unit. You would normally register with them and they would do all the comparisons with the blood types and so on to see if there is a match. If you don't have a relative, a sibling or somebody who can come forward to give you the kidney then you have to look elsewhere and this is where the Organ Transplant Unit came in," he said.
"They were able to get a match for me through a cadaver and that was the joy of my life, that was the pinnacle. That is where it reached because having been told there is a possibility that I could have a kidney and be able to live and go back to a somewhat normal life it was really something that I could not describe. Not many words can say how it was," he said.
Mohammed does not know exactly who the donor was, or even their gender.
"I understand that he or she was in an accident and the family agreed to donate the kidneys. The donor must have an agreement with the family. I got a kidney and another colleague of mine in a similar situation was also fortunate to match the kidney and we got one kidney each."
He said the unnamed donor was able to save two lives.
There are two types of donors, live donors and deceased donation. Most of the live donors give to families and friends.
Justin Squires, 24, knows that all too well. He got his kidney transplant four months ago on April 27.
"I woke up one morning with this extremely painful headache. I could not bear it anymore and I went to the hospital. Everything was just out of control and I was diagnosed with chronic renal failure," Squires said.
He underwent dialysis for 18 months. During one of his visits to the hospital to receive dialysis Squires was accompanied by his cousin Nick.
"When he saw what was going on he was like 'Nah! This is what you have to go through every day?' And was like 'yeah. What ah go do?'," Squires said.
At that moment Nick, 26, decided that he would donate his kidney to his cousin.
"When he said he would donate his kidney to me people told him 'Don't do that. What you doing you will only have one kidney' but he was determined to do what he wanted to do because he said he could not look at his cousin suffer and just stand idly by," Squires said.
Squires's father originally offered to donate his kidney but he was not deemed eligible.
"His blood pressure was over what they were looking for, so he was not able to go through with it," Squires said.
Patricia Quammie, 53, was the recipient of "brotherly love". Her brother Peter gave her his kidney.
"When he gave me that kidney it caused a lot of problems in his home. he is no longer living in Trinidad and Tobago. He now has a new family," Quammie said.
Shafiran Mohammed, 53 said she never asked her family to become a donor but without prompting her nephew, Imtiaz, decided to donate his,
"I tip my hat to every person who donates a kidney. They are the real heroes," Shafiran said.
A donor's story
Media personality Jessie-May Ventour gave one of her kidney's to her younger brother Matthew in December 2011. There were three other people who did transplants that same day.
According to figures from the NOTU, 155 people have done transplants since 2006. This does not include transplants done at private health institutions.
"I have never had any regrets or any doubts that it was the right thing to do. As far as I am concerned this is my baby brother and he deserved to have a chance at having a life. He was not even 30-years-old as yet so he had not really even started his life and I thought it was not right that his life should be cut short like this before he actually began to live," Ventour said.
"In my heart I felt like I had to do it."
The kidney transplant took place just as their father Wilbert was dying after battling cancer for 18 years.
"We went into hospital on November 30. The transplant surgery was December 1 and by December 4 after hearing and satisfying himself that the surgery went well and that my brother was going to be okay, my father passed on. It was a very emotional time for everybody," she said.
Ventour did the eulogy at the funeral and Matthew was allowed to go to the funeral home to say his private goodbye.
"It has been four years and counting since the transplant and Matthew is doing okay. God has been really, really good," Ventour said.
For a year before the transplant Ventour had to watch what she was eating and undergo counselling and psychiatric evaluation. Although she had made up her mind that it needed to be done Matthew began to have second thoughts.
"He was so terrified. He was oscillating back and forth. He said he was concerned that he would ruin my life," Ventour said.
When the time actually came and everything worked out Ventour said she felt as though she witnessed a miracle firsthand. She has a scar to remind her of it all.
In 2012, the NOTU introduced the retrieval of living donor kidneys by the laproscopic or keyhole surgery method. This less-invasive procedure allows for a much earlier discharge of the donor from hospital.
Asked what advice she would have for other donors, Ventour said: "Don't expect anything from the recipient. They may be super grateful or they may not even thank you but you do it because it is something that you feel moved, not just in your heart, but in you very soul to do and go forward.
"The minute you decide I am going to do this for somebody you are not losing a kidney you are an instrument of someone getting a brand new life. It is literally like the person is reborn because I saw my brother's physiological transformation, not having to go dialysis all the time and within the first week the texture of his skin changed. It was the most amazing thing to see," she said.
You can be an organ donor
Becoming an organ donor is easy, just call 800-DONOR. Read the following for answers to questions you may have regarding organ donation:
What exactly does being an organ donor mean?
Being an organ donor means that you have agreed to give life to someone else by donating your body's organs when you die (either by natural cause or in a tragic accident). As an organ donor, you will be giving part of yourself to help someone who needs an organ transplant and, in doing so, you will be giving them the chance to live longer and to lead a full life.
If doctors know that I have agreed to be an organ donor, will they still do everything to save my life?
Yes! Your doctor's first priority and everything possible will always be done to save your life. Your decision to become an organ donor comes into effect only when all their efforts to save your life have been exhausted and your death is imminent, or has been declared according to specific medical and legal guidelines. Also, your team doctor is completely separate from the organ recovery and transplant team, who are called in at the end.
If I am in a coma and declared brain stem dead how do I know I won't eventually recover?
Being in a coma and being declared brain stem dead is not the same thing. You can be in a coma for a variety of reasons but you must be considered brain stem dead. In such cases, you cannot be considered for organ donation. Brain stem dead is final and irreversible. Once you are declared brain stem dead, you are legally dead.
What is the charge to my family to donate an organ, or recipients to receive a donated organ?
There is NO CHARGE to either organ donor recipient under the Ministry of Health National Organ Transplant Programme.
Who can became a donor and what are the age limits?
This depends on the organ being donated. Anyone above the age of eighteen (18) years can choose to be a donor. However, people under the age of eighteen (18) years require the consent of a parent or guardian.
How do I make it known that I wish to be an organ donor?
You can join National Organ Transplant Registry by calling 66-DONOR or sign a National Organ Donor Card. Fill the card out and carry it with you all the times!
Most importantly, discuss your wish to be an organ donor with your family members and close friends so that your decision is clear. (Even though you may have signed an Organ Donor Card, your next of kin must give permission before any of your organs can be retrieved. Remember that, at the time of your death, it may be very difficult for your loved ones to consider organ donation unless you have made your wishes know before.)
Which organ or tissue can I donate?
Initially, kidneys are the only organ to be covered under The Ministry of Health's National Organ Transplant Programme since more people require kidney transplants. The tissue that can be donated is the cornea. Eventually, the programme will be extended to include hearts, pancreas, lungs and livers. All of the world's (and Trinidad and Tobago's) main religious denominations consider organ donation as the highest of humanitarian ideals. Giving life to another by sharing part of yourself is consistent with the tenets of most religious and ethical beliefs. If you are still unsure about it, talk to your religious advisor.