Danny Baine, a Canyon Lake resident and father of three children, has been told by his doctors that he will die without a liver transplant. Danny was diagnosed with Primary Sclerosing Cholangitis in 2009, shortly after moving to Canyon Lake.
The Mayo Clinic describes Primary Sclerosing Cholangitis as a disease of the bile ducts, which carry the digestive liquid bile from one’s liver to the small intestine. In Primary Sclerosing Cholangitis, inflammation causes scars within the bile ducts. These scars make the ducts hard and narrow and gradually cause serious liver damage.
It’s not clear what causes Primary Sclerosing Cholangitis. An immune system reaction to an infection or toxin may trigger the disease in people who are genetically predisposed to it. In most people with Primary Sclerosing Cholangitis, the disease progresses slowly and can lead to liver failure, repeated infections, and tumors of the bile duct or liver. The only known cure is a liver transplant
Danny’s wife, Jen, says that they discovered his disease one morning back in 2009 when Danny’s skin turned yellow. “I made a comment to him about his skin looking yellow. Later that day a few of his co-workers also made comments to him about his skin looking yellow. That was our first sign that something was wrong with Danny,” says Jen.
At first the Baines thought Danny might have Jaundice, a yellowish pigmentation of the skin; but after several tests, the doctors determined that Danny had Primary Sclerosing Cholangitis. He was told that he would eventually need a liver transplant in order to survive and that his MELD score would have to reach 14 before he could be placed on the transplant list.
MELD, also known as Model for End-Stage Liver Disease, is a scoring system used by the United Network for Organ Sharing (UNOS) and Eurotransplant for prioritizing allocation of liver transplants.
Today, six years after being diagnosed with Primary Sclerosing Cholangitis, Danny’s MELD score is 22, and he is currently on the transplant list. However, according to Jen, Danny’s MELD score would have to reach 35-40 before he would qualify for an actual transplant in California. “This is due to the long list of people waiting for liver transplants in California. The sicker patients with higher MELD scores usually receive transplants quicker.” says Jen.
The doctor told the Baines that Danny would die waiting for a cadaver liver donor in California due to the long list of people waiting for transplants.
“In some states a patient can receive a cadaver liver transplant with a lower MELD score than Danny’s because the transplant list is shorter in those states compared to California. The best chance at saving Danny’s life is to find a living donor or travel to a state with a shorter transplant list,” says Jen.
The Baines are trying to remain hopeful that Danny will receive a living donor transplant. Danny’s sister has O blood type, one requirement to be a donor for Danny, but until further testing is done they won’t know if she is a suitable match.
In the meantime, the Baines are considering all their options, including traveling to another state where Danny might have a better chance at receiving a transplant more quickly than he would here in California.
Living with this disease for the past six years has been a daily struggle for Danny. His disease has progressed to the point where he now has cirrhosis, a condition in which the liver does not function properly due to long-term damage.
“He can’t get through a day or a meal without vomiting, and he spends a lot of time in bed,” says Jen, who adds that he rarely attends his children’s school functions because he fears that his children will be made fun of because of his skin discoloration. The Baine children are 7, 10 and 12 years old.
Danny’s disease also has caused the Baine family to struggle financially. Danny is too sick to work as an engineer at his job at AmTrak, and there’s been issues with his disability insurance, all of which has added an extra burden on the family of five.
Jen, a stay-at-home mom, recently became employed at Stater Bros. to help with some of the expenses but it is not enough to sustain the family financially. Jen is doing all she can to help her family but working the nightshift has not be easy on Danny and the children. With Jen working nights and Danny too sick to cook for the children, something as simple as dinner is now an extra daily burden for the family.
Jamie Pulver, a Canyon Lake resident and family friend, has organized a Meal Train for the family. Those who would like to sign up to deliver a home cooked meal to the Baine family, or arrange for a local restaurant to deliver one, can sign up at www.mealtrain.com/trains/q74141.
To help ease some of the family’s financial burden, a GoFundMe account has been set up. To contribute, visit www.gofundme.com and type in “Baine Family” in the website’s search bar.
A silent auction fundraiser will be held at the Canyon Lake Country Club on Saturday, August 15, at 7 pm. The fundraiser organizers are seeking items to auction. For more information about the fundraiser or to contribute an item for the auction, contact Ron Almada at 951-283-3800.
A Facebook page was created to help keep everyone informed about Danny’s journey and the family’s fundraising activities, and to help raise awareness about Primary Sclerosing Cholangitis and living donors. It can be found by searching “Staying Strong for Dan Baine.”
Finally, the Baine family currently is seeking a living liver donor with O blood type. Danny’s insurance will cover the medical expenses of his donor if he is fortunate enough to find one. Anyone interested in becoming a donor for Danny may contact the Baines directly at email@example.com.