Her Options Few, She’s Hoping for Transplant

A 29-year-old woman battling a rare autoimmune disease is hoping to become the first patient in the country with the ailment to receive a double lung transplant following unsuccessful surgery last week to help her breathe.

Shelley Ybarra of Rancho Santa Margarita suffers from Wegener’s granulomatosis, a tissue disease that has collapsed about 70% of her lungs. She is among a small group of American women with the disease who have successfully given birth, according to the National Institutes of Health. Births are rare among Wegener’s patients because the toxic medications to treat the disease induce infertility, experts said.

As her illness continues to progress, Ybarra is now a considering a double lung transplant because her lungs are increasingly weakening. Doctors tried to surgically expand her shrunken breathing passages last week but were unable to because the tissues were so severely scarred.

Dr. James Harrell, the chief pulmonary specialist at UC San Diego who has been treating Ybarra, said the next alternative is a lung transplant, a procedure no Wegener’s patient has ever undergone.

Because Wegener’s is an autoimmune system disorder that causes the body to attack its own tissues, the chances of Ybarra’s body rejecting a transplant are high, Harrell has said.

But, Ybarra said Tuesday, there are few options left.

Since last week’s surgery, Ybarra has been relying on an oxygen machine 24 hours a day to help her breathe. “It’s even hard to change the kids’ diapers,” said the mother of two sons, Austin, 2, and Alex, 19 months.

Saddleback Memorial Medical Center, where Ybarra worked as a patient registrar, will donate a check this week to a trust fund that was set up by her family.

Donations can be made to the Shelley Ybarra Fund at California State Bank, 15771 Rockfield Blvd., Irvine, CA 92718. For more information, contact bank spokeswoman Lori O’Rourke at (714) 951-6734.