Diana Najar always felt she took good care of herself. The 47-year-old Sylmar resident worked in the health profession as a surgical assistant, and maintained a level of fitness by running in 10K races.
But in 2010, following routine blood work for her annual physical exam, Diana was diagnosed with Primary Biliary Cholangitis (PBC), a rare auto-immune disease that slowly destroys the healthy cells lining the bile ducts in the liver.
Few people have ever heard of this disease, which affects 1 in 1,000 women over the age of 40.
The diagnosis was a “shock,” said Diana, who at the time said she was not experiencing any pain, fatigue or other symptoms. But, health problems would emerge later as the disease progressed.
Her illness has progressed to the point where it is no longer an option — she needs a liver transplant. Without it Najar would continue to decline.
She was accepted as a patient by the USC liver transplant team at Keck Hospital in 2020 and her name was placed on a national registry used by the hospital to seek a match.
Now 11 years since her diagnosis, the growing urgency changed the search to finding a living donor rather than a cadaver.
Diana and her family understood that finding a donor could be very involved. It could take years to find a match and it was possible that a match might not be found at all.
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. Even if a match is found, circumstances can change. Medical issues could arise or the potential donor could have a change of heart and decide not to go forward.
“Donors are [kept] totally confidential — regardless if they [are family] or not,” Diana learned.“The registry calls the donor first. This is done through the hospital; they have a separate department for living donors.”
The Najar family is a well known extended family in the Northeast San Fernando Valley. They have been very active in the community and are devout Catholics; prayer has always been at the center of their lives. Recently a fundraiser was held for them at the American Legion hall in San Fernando.
Their Prayers Were Answered
Diana’s half-sister Librada “Libby” Garcia, said she found out she was a match for Najar during a family vacation in Florida in late August.
“As soon as I got back I told Diana so we could start preparing,” she said.
Diana was surprised to find out Libby was a match for her — “actually I was shocked; I thought it might be my [full] sister, Amy” — and shared that she felt some trepidation.
“I knew a family member would be [a better chance for a match] instead of a friend or stranger,” Diana said. “I was excited but I also tried to talk her out of it a little; “I told her,’ you don’t have to do this, I’d understand, you have no obligation.’ It’s a big surgery.”
Libby wouldn’t hear of it.
“I told her, ‘if I didn’t want to go through with it I wouldn’t have filled out the questionnaire,’” Libby said. “I would have done this for any of my siblings.”
Libby, 37, who works for Kaiser Permanente in Rancho Cucamonga as a senior consultant for its patient grievance department, is very aware that giving an organ or receiving one is a major procedure.
Final Tests – PreOp
Last week, Diana and Libby sat quietly in the Keck Hospital of USC waiting room for x-rays, an EKG and additional blood work. The two women were scheduled to meet with anesthesiologists and surgical team members to have the procedures explained.
As they waited, Diana held on tightly to her rosary. While neither sister spoke much, they sat closely together as they waited to take the final tests for pre-op.
Also in the waiting room with them was Diana’s husband, Benny, and their father, Gustavo Padilla Garcia.
“These are the two great loves of my life,” Padilla Garcia said.
As they were called in, his emotion on much of his face was hidden behind his blue medical mask. But his eyes could not hide his feelings, nor could the shakiness in his voice.
“I feel happy for Diana and grateful for Libby being a match and thank God she found a match,” Padilla Garcia said. “Yes, as a parent, I’m sad, scared, and fearful, and I’m concerned for both of them. But I know she’s in good hands here and their faith will help them.”
Given the Green Light
The pre-op test results were “good-to-go” and doctors gave the family a thumbs-up. The two sisters are scheduled to undergo surgery at Keck Hospital on Nov. 10.
During the meeting with doctors, Libby was told her surgery would take four hours to remove the right lobe portion of her liver that will be transplanted to her sister.
“[The doctors] said my liver would grow back,” she said.
Diana’s surgery to attach the new liver will take eight hours.
Both sisters made sure they asked all the important questions they had about recovery and any food restrictions before the consultations ended.
Libby also learned that day, her sister had written a letter to her.
Diana said she had, in fact, written 18 letters in the weeks leading up to this final appointment. They were letters to family and all those that have supported her and loved her. They are “just-in-case” letters serving as her declarations of gratitude, love and that amazing faith that has held her family together.
“Writing these letters got out what I was thinking, what I want done about whatever the outcome of the surgery,” Diana later shared.
“It’s some factual, some emotional. It says what I needed to say, something they can hold onto. Something I maybe couldn’t have done in person.”
Diana gave Libby her letter and some other gifts, including pajamas, after their pre-op appointments were over.
Libby said she and her husband read the letter at home.
“The letter was very personal and very emotional,” she shared. “It’s going to be in a special place in our home and my heart.”
San Fernando’s KidneyQuest Also Assists Families
Finding support for patients and their families can be challenging.
Locally, KidneyQuest, co-founded by Carolyn Lemos-Urquidez, started out of her home in the city of San Fernando. The nonprofit organization is a front line community support group for families like the Najars that are facing diseases that can cause the kidney or liver to fail.
Lemos-Urquidez founded the local chapter to help her husband as well as others who didn’t have access to information and resources. She has run the local organization as a volunteer, and her team — made up of mostly volunteers, now helps more than 3,000 patients a year nationally. Her base is the Northeast San Fernando Valley, but she offers support where it’s needed to reassure patients and their families.
She said she and others in her organization have witnessed as many as 80 transplants.
“All these transplant patients are still alive,” said Lemos-Urquidez, speaking from Atlanta where she was visiting with patients who rely on her foundation for support. “We assisted them on their journey to get the transplant. We will remain their advocate for the rest of their lives.”
The organization also offers information about possible prevention.
“Today with a fast paced lifestyle, relying on fast food is a factor,” Lemos-Urquidez said.
People of color can have a higher propensity for kidney disease brought on by obesity, lupus, active kidney failure, diet, high blood pressure and even the lack of sufficient hydration before physical exertion.
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.
Each year, approximately 500,000 people’s lives in the United States are saved through organ and tissue donation. One single organ and tissue donor can save and heal the lives of more than 75 people.
OneLegacy is a nonprofit organization that saves lives through organ, eye and tissue donation. Spokesperson, Tania Llavaneras, said there is a national need for donors; as of Oct. 31, there were 106,846 patients seeking transplants, of which, 90,328 were for kidneys, 11,734 for livers, and the balance was for other organs.
In California, there are 20,600 waiting for organ donations including 18,111 for a kidney and another 2,250 are awaiting a liver.
For more information on KidneyQuest go to: kidneysquestfoundaton.org
If you would like to register online to be a donor, visit onelegacy.org/registeror register at a local DMV office.
Mike Terry and Diana Martinez contributed to this article.