Lindsay Wilcox, NBC 5 News
Ben Chatraw has a rare liver disease and although doctors say he could die he's low on the transplant list. Now his family is trying desperately to get him a new liver before it's too late.
A Dallas man, in desperate need of a liver transplant, is reaching out for help.
It's been seven years since 36-year-old Ben Chatraw was diagnosed with the rare and chronic liver disease known as primary sclerosing cholangitis, or PSC. In July 2013, Chatraw's health began a rapid decline marked by repeated and potentially fatal blood infections known as sepsis.
“I spent about 45 days in the hospital battling through those infections,” Chatraw said.
The only known treatment for PSC is liver transplantation, but in the United States, livers are distributed based on a scoring system designed to predict imminent liver failure.
At one point earlier this year, Chatraw’s score was high enough, he was allocated a liver. Then, just before surgery, doctors determined it was not a good enough match.
“It's like getting dressed up for the big game, and then not getting to play in the game,” Chatraw said.
He's been told another sepsis infection could strike any day, and this time, doctors said he may not be able to fight it off.
But his transplantation score, also known as the Model for End-Stage Liver Disease, or MELD scoring, is going down rather than up. So while he gets sicker with each passing day, the likelihood of a transplant through traditional means is now low.
The family has started the website where they are pleading for people to consider designated organ donation. The process allows the family of a deceased person to give an organ to a specified patient, regardless of their position on the transplant list.
They are also applying to the living donor program at Baylor Hospital in Dallas, but the thought of one of his perfectly healthy friends or family members undergoing a major surgery to save his life is hard for Chatraw to process.
“That in and of itself, that is deep, and it's emotional,” said Chatraw.
“Barring a bad circumstance, that is sepsis, I think we clearly have time to get things done in a thoughtful manner,” said Klintmalm.
For Chatraw and his wife, Stephanie, it is that hope and their unwavering faith that they are counting on to get them through.
“i'm excited for him to be able to feel better than he has felt in a long time. I'm excited for the kids to have their dad feel better than he’s felt in a long time,” said Stephanie Chatraw.
Chatraw had a liver designated for him just last week and on Tuesday, he was prepared for surgery. However, just before the procedure was to begin, further tests showed the liver was not a good enough match. The family is still hopeful that another designated donor or a living donor will help make up for the shortcomings of a transplant system that doctor's say is the best the United States has ever had, but simply not perfect for a patient like Chatraw.
To be a potential donor for Chatraw, a person would need to be between the ages of 18 and 55 with a blood type of "O."
To learn more about the testing and donation process for live donors, visit http://www.liverforben.com/faqs/