Bristol resident Matt Ragiani loved to attend his 8-year-old daughter's dance performances and sporting events. He was on hand for every event until recently, as his declining health began to keep him homebound.
He developed a disease called primary sclerosing cholangitis, or PSC, which involves the thinning of his bile ducts and eventually leads to liver failure.
Matt was placed on the National Organ Donor Registry four years ago, but the scoring system used to receive a liver from deceased donors does not reflect how sick Matt really is, according to his doctor.
“Matt right now, although he is very sick, has a meld score somewhere in the low 20s, which in this region will not allow him to get a liver readily,” explained Saint Francis Hospital and Medical Center doctor Martin Hoffman.
MELD stands for Model For End-Stage Liver Disease and a gravely ill person in need of a liver donor could have a score as high at 40 according to the United Network for Organ Sharing.
Ragiani is also in a region where it is tougher to get donated organs, according to Hoffman. His wife said they were told moving south would increase his odds of receiving a liver, but they both grew up in Bristol and are hesitant to leave their family and support system.
It’s a system that involves volunteers who help the family with meals, house cleaning and childcare as they navigate this tough time.
To increase Ragiani’s chances, a living liver donor is being sought. Someone who is an A blood type who passes rigorous screening can donate part of his or her healthy liver.
“That portion will grow to a normal size in the recipient and the patient who donates that liver will also have their liver replace itself so to speak,” Hoffman explained.
While the family waits, Ragiani’s wife Jennifer has started a Facebook page called "Support for Ragz" to raise awareness and hopefully find a match.
If you are interested in learning more about becoming a living organ donor, contact the Yale New Haven Hospital Transplantation Center at 1-866-YALE-TXP.