At one time Diana Najar was an avid runner.
“I was able to run six miles,” said Najar, 47. “Now, I have to see if I can try walking to the corner.”
For the past 11 years, the Sylmar resident has lived with Primary Biliary Cholangitis (PBC), a rare auto-immune disease which slowly destroys the healthy cells lining the bile ducts in the liver.
According to the Mayo Clinic, the disease causes the bile — a fluid in your liver that aids digestion and helps rid the body of cholesterol, toxins, and worn out red-blood cells — to back up in the liver, leading to an irreversible scarring disease known as cirrhosis.
Najar learned the disease often advances silently without obvious symptoms. In her case, she would have never known she had it until the condition was detected after routine bloodwork showed “all my liver enzymes were highly elevated.”
Doctors repeated the tests to see if there had been a mistake. The second results were the same, and a liver biopsy later determined that it was indeed PBC which, according to rarediseases.org, affects about 1 in 1,000 women over the age of 40.
There is no cure for the disease. While medication can slow the damage to the liver, cirrhosis eventually occurs and — as the condition worsens — can lead to potential liver failure and a need for a liver transplant.
Looking For A Match
Bennie Najar, Jr., says his wife has taken part in several studies as the disease has progressed, with a couple of doctors monitoring her condition. But “it’s finally gotten to the point where [his wife’s liver] has turned into cirrhosis,” he said.
Her symptoms are now more pronounced, including major pain and fatigue. Najar has had to reduce her hours in the orthopedic surgeon’s office where she works because, she says, she’s tired all the time.
“I can sleep all day if you let me,” she says with a laugh.
Bennie said his wife was accepted as a patient by the USC liver transplant team in 2020, and there is an ongoing search for a match.
“We’re trying to find a living donor,” he said.
While the illness has progressed, Najar said it “thankfully” hasn’t yet led to hospitalization. However, she currently is nowhere near the top of the list of those needing transplants even though she’s qualified to have one.
A deceased donor is not an option for her; they typically go to the most desperate patients. It’s why her family is making a public plea for a living donor. Najar said while she is not yet in dire straits, “I’m beginning to have all of the symptoms for end stage liver disease.”
The liver is the only solid internal organ capable of regeneration. According to the Mayo Clinic, a living donor’s remaining liver can regrow to its original size, volume, and capacity within a couple of months following the surgery. And the transplanted liver will grow and resume its normal function in the recipient.
Most living liver donors are close family members or friends of the liver transplant candidates. But the Najars say no match has been found among their relatives and friends who have been tested. So they are widening their search because the Transplant List doesn’t actually go out looking for donors.
The United Network for Organ Sharing indicates there are more than 14,000 people in the United States waiting for a new liver, which is the second most-needed organ after kidneys.
Not Getting Better
Najar is suffering from edema (swelling of the ankles) and also retaining fluid in her abdomen. She’s also afraid of developing esophageal varices, enlarged veins in the tube that connect the throat and stomach that are treated by placing elastic bands around them to prevent bleeding.
“The doctor said it’s not going to get any better. They just don’t know when (end stage liver disease) will set in,” she adds.
A live donor transplant is her only hope now.
To begin the matching process, a person must fill out the online questionnaire at USCLivingDonor.org and click on Living Liver Donor (https://bit.ly/3fJf0PN) where they need to type in Najar’s full name—Diana Padilla Najar.
She said she was reluctant to make her plea for a living donor before, because “I know it’s asking a lot,” but now her family is also backing that plea.
“They don’t want me to die,” she says.
Whoever is a match would undergo a battery of tests before the actual surgery, but won’t incur any expenses. “My medical insurance picks up everything (all the costs) for both parties,” Najar said.
A transplant would dramatically change her life, restoring the energy that’s been sapped from her and allowing her to resume an active lifestyle.
“It’s depressing not to be able to do the things you used to do. You know you’re getting sicker,” Najar said. “You get emotional and depressed because of it.”
Even if a person who registers to become a liver donor is not a match for Najar, they could still be a match for someone else needing a transplant.
Either way, “it’s still a wonderful gift” for someone, she says.
A gift of life.