Feb. 25–NEW HAVEN — Jose Santini spent too much of his life drinking and abusing drugs.
That and a case of hepatitis C — now cured — severely damaged his liver.
Now, he’s hoping for an altruistic donor who will donate part of their liver so he can devote the rest of his life to serving God and other people.
"They told me 10 years ago I had a little spot on the side of my liver," said Santini, 43. "I didn’t take care of it until the last moment."
Five years ago, Santini had a biopsy done and found out that he had stage 4 cirrhosis.
"I didn’t take care of myself," he said.
Santini, who lives with his wife, Linda Jouet, in Fair Haven, was born and raised in New Haven by Puerto Rican parents. In addition to his wife and fellow members of Evangelist Church of God, he’s found a nucleus of support at the BHCare clothing closet in the Patricia C. Andriole Volunteer Services Center on Harrison Avenue in Branford.
Cindy George of Branford, who volunteers at the clothing bank, has been spreading the word on his behalf.
"I just saw a need to help someone who really wants to live," George said. "It’s been on my mind for a long time."
George said the doctors have said now is a good time to receive a liver transplant. "He’s in fairly good shape. He’s strong," she said.
Santini is humble and leaves it to others to praise him. It was George who revealed that he goes fishing and brings his catch to the Community Dining Room, housed in the same building as the clothing bank.
"I really like him and his wife," George said. "They’re wonderful people. They do a lot for other people. They do outreach for homeless people. It’s really important to him and this is the only way I could help."
"He’s utilized the clothing bank for a couple years now," said coordinator Joan McFarlane. "He’s a nice young man looking for a second chance of life. He’s a Christian, he turned his life on to the Lord Jesus Christ. He’s loving, kind, responsible, caring. He always speaks good things of others. It’s not always about himself."
Santini’s personality has won a place in the hearts of the people at the clothing bank.
"I met Cindy and Joan," he said. "The way I approached them with respect, love, smiling, going through my tribulation. … I got the God love on me. It touches other people … It’s like a family here."
Santini served time in prison for possession of narcotics and was released in October 2013.
"I was a user. I don’t harm nobody," he said. "I’ve been clean almost 10 years now, [to] the glory of God."
He didn’t receive good care in prison, said his wife. "I was in agony for two weeks," he said.
Santini’s blood type is O-positive. "As soon as they match the type of blood I should be all right," he said. "I’m just patient, have faith and hope."
Santini’s transplant doctor, Dr. AnnMarie Liapakis, said Santini is not high on the donor list, but that people can designate their organ to a particular person, as long as they’re a match.
"They would complete a blood typing and health screening questionnaire," she said.
Meanwhile, Santini said his health "is a rollercoaster, up and down." Sometimes he feels weak. "I don’t want to get up in the bed, I get confused," he said.
"He’s a good man," Jouet said. "He’s very humble and since he came out of Yale [New Haven Hospital] he’s doing not well because of his situation with his liver. He’s fighting and hoping he can get the transplant soon.
"It’s difficult to see somebody who’s fighting for his life," Jouet said. "Sometimes ammonia from the liver gets him messed up." Ammonia is formed in the breakdown of protein and the liver converts it to urea, which is then passed out of the body in urine. Jouet said if too much ammonia reaches the brain, "he can go into a coma."
"It’s difficult because he’s a young guy," Jouet said. "I’d like to see him in good health. I’d like to see him enjoying life. He’s always tired. … I try to help him, make him a lot of good food. … He cannot eat … salt, grease, no red meat, a lot of things."
Santini has had a couple of people respond to his plea, but so far has not found a match.
"The other day some woman called from New York to be a donor but it wasn’t matching with his type," Jouet said. "I see his good heart. … I think about that time he didn’t have no hope, he didn’t want to live."
Pastor Inocencio Rivera of the Evangelist Church of God on Humphrey Street said Santini has been a faithful and helpful member, installing a heater, for example. "Everything I ask him to do, he does it in the church," Rivera said. "We pray to God that they find what they need. … I pray every day for him. I try to get everything, when he asks me, what he needs."
Anita Ruggiero, a clothing bank volunteer, called Santini "a sweetheart. They’re very nice people, never ask for anything, very caring, very outgoing, always smiling. So when he needs something we go beyond the cause."
Under the radar
Liapakis said that while alcohol and drug abuse played a part in Santini’s disease, scarring from hepatitis C, causing cirrhosis, is the main problem. People can contract hepatitis C in multiple ways and, in fact, doctors are urging anyone born between 1945 and 1965 to be screened for the disease because people in that generation are five times more likely to have it than others, according to the Centers for Disease Control and Prevention. At that time, medical equipment could have been contaminated and screening procedures were not as widespread as they are today, according to the CDC.
The HepChope website calls it a disease that has been under the radar, noting, "It’s not talked about much, so even though it affects millions, many people don’t know about it. It’s almost been forgotten."
Liapakis said of Santini, "He is a good candidate for a transplant in that he is a young person with no other significant problems or disease other than his liver disease. His life would be significantly improved with a transplant."
She said that when a person has liver disease, blood has difficulty getting through the organ and to the heart, which builds up blood pressure in the area.
"When blood is trying to come from the lower part of the body and the intestine, it’s hard for the blood to get through the liver," Liapakis said. In response, varicose veins build up in the area of the stomach and esophagus.
Needs for transplants
Liapakis said Santini has had a procedure called a TIPS, a kind of shunt inserted into the liver, which connects the blood vessels within the liver to reduce the pressure and prevent bleeding.
"He’s actually had treatment for his hepatitis C and he was cured but there’s no treatment for the scarring in the liver."
Liapakis said there are 14,000 patients needing donated livers in the United States and there is a shortage of organs from deceased donors, especially in Region 1, which includes all of New England except western Vermont, partly because of good health care. There is a need for 900 livers in the region.
"Every two hours one patient dies on the overall transplant list" nationally, she said. "One in five will die on the liver wait list in Connecticut."
Liapakis said a problem with liver disease is that it is "unpredictable. They have complications from their liver disease, such as infections and bleeding that will make them become sick very quickly."
She said there is also a stigma to the disease.
"I often get the sense that there’s a belief out there that it’s self-inflicted and that’s not true," she said.
She said that in addition to cirrhosis, 30 percent of the U.S. population right now is afflicted with fatty liver disease.
An advantage to donating part of a liver is that it’s the one organ that regenerates itself. Both donor and recipient will have complete livers within six to eight weeks of the transplant, Liapakis said.
Living donor transplants are covered by the recipient’s health insurance and the donor is compensated. For more information about becoming a donor, call the Yale New Haven Transplantation Center at 866-925-3867 or Donate Life Connecticut at 203-387-1549.
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