Rare blood disorder prompts drive for donations
May 11, 2019
Audriana Coogle's legs felt heavy. The 11-year-old woke one morning to find they were swollen and red. She couldn't stand up or walk. She couldn't get out of bed.
Doctors chalked it up to the then-11-year-old playing too hard and told her parents to ice her legs and keep her home from school. A pediatrician suggested it could be arthritis.
But that didn't make sense. Audriana didn't have just swollen legs – her stomach was upset, and she was spitting up blood.
"We had no clue what was going on," said Audriana's mother, Aster – a surgery tech at Adventist Health Tehachapi Valley. "But you trust your doctors."
That was 11 years ago, before Audriana visited a new primary care physician who asked for an extensive medical history and uncovered a congenital bile duct defect Audriana had when she was an infant. Her new primary care physician also insisted on sending Audriana to a gastrointestinal specialist – Dr. Robin Matuk, who cares for patients at Adventist Health Bakersfield.
A routine endoscopy that ordinarily took about 20 minutes lasted more than three hours. Matuk arranged for air transport to a children's hospital in Los Angeles, where physicians identified a host of health issues. Audriana had portal vein thrombosis – a clot in the vessel carrying blood from the liver to the intestines; liver cirrhosis; esophageal and duodenal varices – or enlarged veins in the esophagus; fibromyalgia; and – perhaps most damaging of all – a rare blood disorder called antiphospholipid syndrome.
That blood disorder leads to the formation of blood clots, in many cases in the extremities – explaining Audriana's swollen legs. Growing up, her various health complications led to internal bleeding. Every hospital visit required a blood transfusion.
"They'd manage it until it stopped," Audriana said. She's had almost 10 transfusions in her short lifetime, and every hospitalization brings a concern about whether the facility will have enough of her rare B negative blood.
On at least one occasion when Audriana was hospitalized for more than a week, it took several hours to get the blood required for a transfusion. Audriana's blood pressure dropped. She felt weak and blacked out.
"It made me worry that this was it," Audriana said. It's why she says donating blood often is so critical.
"If I could give blood, I would – I've always wanted to, but I can't," Audriana said. "So instead, I ask others to do what they can."
Adventist Health Tehachapi Valley has partnered with Houchin Blood Bank to host a blood drive in Tehachapi in honor of Audriana and to raise awareness of the importance to donate. The blood drive runs from 10 a.m. to 2 p.m. May 24 at Adventist Health Tehachapi Valley, 1100 Magellan Drive, Tehachapi. To sign up, please contact Christina Scrivner at [email protected]