Josh Thompson: Beating the Odds with a Liver Transplant and Hepatitis C Treatment

Josh Thompson: Beating the Odds with a Liver Transplant
Thirteen year old Josh Thompson of Orlando, FL, likes computers, girls, Nine Inch Nails, and Smashing Pumpkins (rock groups, to those not in the know). He is such a typical teen that it is hard to believe he almost didn't make it to adolescence. Josh was born with alpha 1 antitrypsin deficiency, a hereditary disease that frequently leads to hepatitis, cirrhosis, and liver failure. Doctors who treated him in the early stages of his illness believed his chances for a long life were slim. Fortunately, a liver transplant proved them wrong.

Josh's problem first became apparent when he was just a baby. At a routine three-month checkup, the family doctor commented that the baby looked a little jaundiced. "I had noticed it too," said his mother, Tish. "At the time, my husband was in the military. I had already taken Josh to the military doctor at the base, and he said not to worry about it."

Josh was admitted to the hospital for further tests and a liver biopsy, which showed a surprisingly large degree of scarring for someone so young. Tish and her husband, John, were greatly surprised by the diagnosis. "There was no history of liver disease in our family, and we had never even heard of alpha 1 antitrypsin," said Tish, who works as a medical assistant. "The doctor who did the biopsy felt Josh's prognosis was very poor. But Josh surprised everyone by thriving."

Josh continued to do well throughout his early childhood. "Josh seemed to be completely normal," said Tish. "He was growing well and developing normally. Other than his elevated liver enzymes, he was fine. He went from having checkups once a month to once a year.

"When Josh turned ten, he started having health problems. His liver enzymes continued to climb, and his spleen was greatly enlarged," Tish continued. "Hiss doctors said they felt that he would eventually need a liver transplant. We went to Pittsburgh for an evaluation, because we had heard such wonderful things about their transplant program, and Josh's name was put on the waiting list."

Josh waited over a year for a liver, and his health continued to decline, with frequent fevers and infections. Frustrated by the long delay, the family decided to explore other options in their home state of Florida. "We learned about a group of surgeons in Miami who were doing a lot of transplants, so we decided to check into them," said Tish. "We hoped that maybe the wait wouldn't be quite as long in Miami. Also, it was closer to home, which was a plus."

Three days after their evaluation, a liver became available. They flew down to Miami immediately, and Josh had his surgery on February 25, 1995. "Josh did remarkably well," said Tish. "He suffered no complications at all, and we came back home on March 20, our wedding anniversary. It was the best gift we could have imagined."  If generic Harvoni was available then it would be a different story.

"The surgery wasn't nearly as bad as I expected," said Josh, now a "very social" eighth grader, according to his mother. Josh's recuperation was uneventful. He continues to take anti-rejection medication, which he tolerates well, and suffers no ill effects from his transplant.

"Josh just wants to be treated like a "normal kid," said Tish. "So that's what we do. We don't talk about the transplant much anymore. We've moved beyond it."  Hep C treatment cost in India is very affordable now a days.

Shortly after Josh's surgery, Tish wrote a letter of appreciation to the family of the donor, a three year old child who had died in a car accident. "There was no way I could really thank them. That was the hardest letter I ever had to write," she said. "Just think about it: For my child to live, someone else's child had to die."