By Catherine Kolonko
Bacterial meningitis caused Kyla Winters of Carmel Valley to lose both her legs to amputation but she can walk again and still considers herself lucky.
In the summer of 2009, she was with a group of friends when she suddenly felt awful and told them to get her to a hospital, quick. She recalls telling them somewhat prophetically that she was dying and that they needed to call an ambulance. She was rushed to Scripps Mercy Hospital emergency department in Hillcrest.
“Within 24 hours I had kidney failure,” says Winters, 39, who relies on the memory of her twin sister to tell her story. Much of what happened for the next three months that Winters remained in the hospital is a blur. She recalls nothing of her stint in the hospital intensive care unit (ICU), partly, doctors explained, because of a condition called ICU psychosis, when the body undergoes such daily stress that the memory tends to fail.
“I was in ICU four weeks,” said Winters. “I don’t remember being in the hospital.”
Doctors had conducted numerous tests, a CT scan, and x-rays and were fairly certain that there was no brain damage, said Liana Thomas, Winters’ twin sister who took the first flight to San Diego upon hearing of her sister’s hospitalization.
“We were all worried because mentally she would be awake but kind of delirious, and meningitis often will affect the brain,” Thomas said.
Doctors in the emergency department quickly administered antibiotics. One more hour without medical intervention and she might have died, says Winters, a couple hours earlier and she might now have more limbs.
“You die very, very quickly,” Winters said, describing what she later learned about the disease.
Meningitis is an inflammation of the membranes that cover the brain and spinal cord and can result from a bacterial, fungal, or viral infection. Bacterial meningitis like that which Winters experienced is a respiratory condition that is acutely life threatening. Also known as meningococcemia, symptoms include high fever, headaches, a rash, and stiffness in the neck.
Winters learned later that she caught the meningitis strain from another person. “You catch it like a cold,” she said. “I was run down. I’m sort of a workaholic.”
Winters was hospitalized for more than three months. Before turning the corner to recovery, her blood pressure plummeted several times and she suffered three cardiac arrests and respiratory and kidney failure, resulting in amputation of both legs and all fingers. She was dying from the meningitis and doctors at one point gave her less than 10 percent chance of survival, she said.
The effects of meningitis left her legs, fingers and thumbs septic with disease that ultimately required amputation. Winters giggles slightly and explains that she has gross photos of her blackened limbs before they were amputated in October of 2009.
“Basically all the blood rushes to your organs to try to save your life,” she said.
She has since had several operations to stretch skin and sculpt what is left of her hands in a way that allows her to grasp objects. A metal plate implanted in her hand serves somewhat like the thumb that was amputated.
“It gives me my functionality because otherwise I wouldn’t be able to pick things up,” said Winters, demonstrating how it works by lifting a prosthetic leg that she has just removed in order to sit more comfortably.
More operations on her hands are planned using bolts that will have to be turned six times a day in order to lengthen the bone. In the meantime, she is learning new ways to do things without fingers.
After her hospitalization, Winters devoted months to rehabilitation at Vibra Hospital and Sharp Hospital and Rehabilitation where she learned how to use her new prosthetic legs and reshaped, fingerless hands. Her courage to overcome adversity will be recognized by Sharp HealthCare Foundation during its annual Victories of Spirit event on June 3. She is among five people to receive the Eagle Spirit Award that symbolizes the Navajo sign of the most potent healing power.
“We celebrate not only their amazing stories but celebrate their commitment to giving back to the community to benefit others,” Sharp’s System Director of Rehabilitation Services David Brown said in a news release.
The most challenging moments of Winters’ rehabilitation happened when she tried to stand for the first time. At first she was afraid to try to stand using prosthetic legs. Her doctors were concerned about her progress because the process from standing to walking is usually gradual, she said.
“It took me a while to get to the standing position but then when I was able to stand, I pretty much started walking right away,” Winters said.
“So at first they were like, ‘What’s taking her so long?’ Then I was immediately walking and they were surprised by that.”
Winters has set a goal to return in a year to her position as chief development officer for the Alpha Project for the Homeless, where she worked for the past 13 years. While on disability leave, she volunteers as often as possible for the Alpha Project and mentors people like herself who have lost limbs to amputation.
Her rehabilitation has been helped along by others without limbs who she met on a web site where they share tips about how to function as amputees. She learned to place colorful, sticky plastic flags like those used for documents on her credit cards to make it easier to pull them from her wallet or an ATM machine. And when she first started driving a car again, it was friends at the web site that informed her that she did not have to use special equipment just because she wears prosthetics.
Winters’ twin sister, husband and children moved from Alameda to San Diego to help with her recovery. From the beginning, Liana played a major role in her rehabilitation and wanted to do everything possible to help, including donate limbs if necessary, Winters said. Ultimately, she donated a kidney that was transplanted into Winters’ body in the fall of 2010, allowing her to finally come off kidney dialysis.
Initially, her sister was pregnant with her second child and therefore unable to donate a kidney right away. So Winters endured 10 hours of daily dialysis for a year while waiting for the right time for the transplant. Liana and her 4-year-old son kept the dialysis machine operating with daily changes in liquids to keep it running smoothly.
“My nephew helped,” Winters said. “He knew what buttons to push.”
“It was pretty uncomfortable,” she recalled about life during dialysis. “I’m so glad to be off it.”
Whenever possible, Winters likes to encourage people to learn about the meningitis vaccine and to consider being an organ donor. She says she is living proof that organ donation saves lives. She is also fortunate that because her kidney came from her twin she does not require as much immunosuppressant medication to prevent her body from rejecting her new organ.
Winters is excited about the next step in her rehabilitation which will include learning to walk with a different set of legs that can accommodate high heels. While she views herself as a tough and committed fighter for better lives for people who are homeless, she also has another side to her personality that has always loved heels, lip gloss, and being feminine.
Before her illness, people teased her about why she drove such a “junky car” and she often replied it was because she liked her shoes, joked Winters. She liked them so much, that the twins now laugh at Liana’s initial reaction to hearing the word amputation because her first thoughts were how devastated her sister would be if she could no longer wear high heels.
Other changes that Winters has had to adjust to include temporarily giving up her beloved pet greyhound Diego. She looks forward to the day they can be reunited but for now he lives with a friend because she is unable to take him for daily walks.
She is still getting used to living without her natural legs and sometimes falls because she forgets she doesn’t have them. Despite her setbacks and the challenges ahead, she is grateful for the love of family and looks at life as she did before her medical ordeal, with hope and optimism, she said.
“I’m so lucky to have a twin. I don’t look like I’m lucky but I am. Not a lot of people survive bacterial meningitis and most of them don’t have identical twins.”