A new liver or his life

Stepping out onto the front porch and taking a stroll around his home at Lawrence Park, Arima, without stumbling or falling is near attainable for 90 lb Omari Williams on a “good day”. And “good days”, he said, don’t happen often. Venturing into the heart of Arima with his younger brother, who accompanies him for physical support, is an adventure.

Omari is 24 years old and a victim of Sclerosing Cholangitis and Ulcerative Colitis, diseases of the digestive system. Every morning, when Omari awakes, he must ingest a dose of prescribed pain killers to get some ease from severe arthritic pains to his back, knees and elbows. His days are spent sitting in an armchair of his mother’s living room and watching television. When he grows tired of that, as his eyes constantly tear because of a jaundice condition, he retreats to his bed and tries to fall asleep. Omari’s condition is deteriorating and if he doesn’t get a liver transplant soon, he will die.

Unfortunately, for Omari, liver transplants are not done in Trinidad and Tobago. His mother, Sandra Elias, a data retriever at Service Commission and single parent of four, said that seeing her son in his condition is like “waiting for him to die. Imagine I born in this country, live in this country and my child has to wait to die. I have no money to launch no big campaign. It’s almost like I have to sit and watch him die,” she lamented. “It’s like a young man dying because he was born in Trinidad.”

Omari was diagnosed with Sclerosing Cholangitis (SC) and Ulcerative Colitis (UC) in the United States four years ago. However, he first exhibited symptoms of UC, from age 14. Local doctors were unable to identify his condition after running a series of tests during his two-month stay at the Port-of-Spain General Hospital. Although no cause for (UC), a rare illness, has been proven, scientists believe that the disease results when the body’s immune system reacts to a virus or a bacterium by causing ongoing inflammation in the intestinal wall. The most common symptoms are abdominal pain and bloody diarrhoea accompanied by weight loss, fatigue, loss of appetite, rectal bleeding and loss of body fluids. Sclerosing Cholangitis, whose main symptoms are itching, fatigue and jaundice, is caused by UC. The disease occurs when the bile ducts inside and outside the liver become inflamed and scarred. As the scarring increases, the ducts become blocked which results in bile build-up in the liver causing damage to liver cells and eventually causing liver failure. Surgery is the only cure for UC.

When Omari responded to his aunt’s suggestion to seek assistance in the US, doctors abroad were only able to offer him medication which they said would not make him better. “US doctors said that because I’m not a resident there, it would be difficult to get a liver transplant,” Omari told Sunday Newsday. “I remember the day at the hospital when the doctor came to me to let me know what my condition was. He sat on my bed, and all the time I had been there no doctors had ever sat on my bed so I thought this was serious. I realised the doctor’s nose was red, like he had been crying and he told me ‘you have a disease and we do not have a cure for it. You need a transplant, your liver is failing. It will stop working to support your body.’ He said ‘I don’t know if it will take one year or five years, but if you don’t get it you will die.’ “At first I listened. I thought he (doctor) was supposed to know what he was talking about. I didn’t feel any different but it was after I got home and called my mom, it really started sinking in,” said the former Arima Secondary student.

Omari obtained a series of tests including catscans, a liver biopsy, colonoscopy and endoscopy at  King’s County Hospital in Brooklyn, New York. “A team of doctors worked with me because they were really anxious to find out what I had because of the symptoms and because of my age. They told me it was nothing that I did to incur this condition. They tried to find a pattern in my family’s genes and it was within four or five months that they determined what I was suffering with.” Omari returned home to his family November last, after he became seriously ill. He wants to be of help at home to cover the costs of his bills and loans his mother has been paying for years now. The birth of his nephew, Christian, was a happy point in his life, which has worked to subside many times of feeling depressed and angry, he said. “There were points...when I wouldn’t accept the fact that I was sick. Right now it’s a point where I accept. It’s been ten years. Sometimes I feel tired of trying..,” he said.

At age 14, Omari first experienced symptoms of the disease when he “began passing blood, and I progressed to the point where I would get sick, each time for a longer period.” Two weeks had passed when he couldn’t eat and walk. There were times when his brothers Kele and Peter had to lift him to put him on the bed, to get him to the toilet, and hold him up to bathe. “We took him to the hospital immediately. He stayed there for two months and he got about 18 blood tests because they couldn’t determine what he had,” said Ms Elias. “I remember coming to see him at PoS General the second time he was admitted there, and it was 7 o’clock in the night and Omari was sitting on a bench, holding up IV, the needle in one hand and the bag in the other.

“For me to get any documentation for him to take abroad when he went to the US in 1999, I had to pay to get it. There were days I had to be walking up and down crying in the hospital just to get the documentation. He had a large liver, large spleen and jaundice. The first time I had to take him out of the hospital because they had him like a guinea pig, two whole months and they couldn’t tell me what was wrong. The doctor, who had his students come in on mornings to observe him, told me he had piles. “Afterwards, I took him to Sangre Grande Hospital where the doctor who treated him said he had sickle cell anaemia... After undergoing a colonoscopy and an edoscopy, she determined that his lymphnodes were swollen and were blocking the pathway of his digestive system.Ms Elias continued: “I don’t know who to turn to or where to get help or advice. There are too many single parents with children like this with serious health problems and they need help.”