Alyse Ornelas didn’t know her heart was deteriorating when she walked into an emergency room out of breath and 23 weeks pregnant.
What seemed like pregnancy complications turned out to be symptoms of an extremely rare heart disease. Within minutes of walking into Clovis Community Medical Center last month, the 29-year-old elementary school teacher was fighting for her life and that of her unborn son while hooked to machines keeping her breathing.
Several days later, after being transferred to Stanford University Medical Center, she was told her unborn son had died and that she would need a new heart.
Ornelas knew her baby was gone days before, although no one told her. Coming in and out of consciousness at the Clovis hospital, she remembers seeing the doctor who was supposed to deliver her son pacing outside her room, then talking with her husband. The sight was enough for her to realize what happened.
Doctors said if Ornelas hadn’t walked into the emergency room when she did, she would have died by the end of that day. It was first thought she might have been suffering from a stress-induced heart attack or broken-heart syndrome. Instead, she was diagnosed at Stanford with giant cell myocarditis, a rare disease that kills heart cells, and was hooked to machines that kept her heart pumping.
“Basically the only free space of skin (without tubes) was my forehead and shoulders,” Ornelas recalls with a laugh. “I was completely plugged into everything.”
Her heart disease is so rare that the renowned medical center typically only sees one patient with it every several years, says Dr. Michael Fowler, who has been at Stanford since 1982 and served as former director of its heart failure program.
She’s a miracle.
Ornelas takes some comfort in the diagnosis, regardless of its severity.
“If I pass now, they have answers,” she says, thinking of her family.
Ornelas and her husband, Michael, and their 2-year-old daughter, Emaley, are now receiving an outpouring of support from the community. A donation account, “Alyse’s Recovery Fund” on generosity.com, created by Ornelas’ friend Nicole Bryant, has raised more than $7,500 in 10 days to help offset medical costs. People can also donate at any Wells Fargo bank to an account under the same name.
“People surprise me in the best way,” Ornelas says of the support her family has received over the past month. “It’s all a new perspective on people. … I’m so astounded by humanity.”
Ornelas learned on Friday afternoon that her kidney isn’t functioning properly, which could mean her heart is worsening. She was told to come to her next doctor’s appointment on Tuesday with Fowler and Dr. Shirin Zarafshar prepared to stay in the hospital in case a surgery is required to install a left ventricular assist device – commonly referred to as an LVAD or a “bridge to transplant,” which pumps blood for the heart while awaiting a heart transplant.
Fowler says there’s only a slim chance she won’t need a heart transplant. It’s unknown how long it could be until she’s eligible to receive a new heart, and if the hearts available from organ donors would be compatible with her body. If she does receive a transplant, because she’s only 29, there’s also a possibility she would eventually need another.
In the meantime, Ornelas takes a mix of medications for her disease, and a defibrillator installed on her heart constantly monitors its beating and sends data to her cardiologists.
Fowler says it’s unknown what causes giant cell myocarditis, but it’s believed to be related to the immune system being unable to differentiate “friend from foe.” Ornelas was diagnosed with a related autoimmune disease that’s more common, called myasthenia gravis, shortly after graduating from Yosemite High School in Oakhurst.
Despite the gravity of everything Ornelas is experiencing, she’s staying positive.
It’s really all about perspective. … Through all this, I get a second chance at life.
“It’s really all about perspective. … Through all this,” she says, “I get a second chance at life.”
Fowler calls Ornelas “truly remarkable.”
“Not once have I heard Alyse say, ‘Why has this happened to me?’ ” Fowler says. “Not once have I seen her drop her head or her shoulders in any sense of giving up. She has shown a resilience and an aptitude that I rarely encounter in terms of her bravery and determination in looking forward and dealing with her disease.”