News

Pardee fund helps to save woman with mystery illness

Jackie Austin talks about how the Pardee Foundation's Women Helping Women fund saved her life.

By Miranda McFalls, Published: October 23, 2014

Jackie Austin, a 53-year-old skin care therapist from Asheville, traveled to Italy in 2008 on what was supposed to be dream vacation. It was both a bucket-list trip and visit to see her daughter, Cera McGinn, who was working on a farm.

She traveled through the scenic country to Tuscany.
"The farm was a working farm so there weren't towels delivered in the morning or anything like that," Austin says. "It was very rustic, beautiful."
Austin would take a walk and cuddle the animals.
"Every morning there would be some kind of new something, whether it was a new little sheep or little baby pig and I just picked them up," she said. "Nobody told me. And I guess if you're smart, if you travel overseas a lot, you know that you're not supposed to touch farm animals, especially ones that were born a few hours before. Every picture of me from Tuscany I either have my mouth kissing a donkey or holding a baby. I spent every day smothered in animals."

After leaving the farm, Austin traveled with a tour group to Rome where she boarded a plane back to the U.S. Before she left Italy, she had developed a fever and red rings around each ankle, with red "tentacles" that went up each leg. Although she was mildly concerned, the condition did not seem to be anything that her doctor back home could not treat. Sure enough, the physician told her the inflammation was simply cellulitis. That, it turned out, was the first of many misdiagnoses.
Over time, Austin grew sicker. She was lethargic and depressed. Several weeks after her initial diagnosis she admitted herself to the Mission Hospital Emergency Room. When she told nurses how she developed her illness in a foreign country, doctors immediately put her in isolation.
The doctors "determined that whatever it was had probably already worked itself out," she says. "They checked my blood work and everything seemed to be fine so they just kind of sent me on my way."

'It would just be black'

Soon after, she began having gastrointestinal bleeding and blood in her stool.

At the time, Austin owned a decorative painting business and knew something was amiss when her illness began affecting her work.

"I was up on ladders really high with my head back doing a lot of children's murals," she recalls. "I'm pretty tough, I'm a rower, so I put up with a lot of uncomfortable physical challenges but I would be up on the ladders and I would look down and I couldn't see the floor sometimes, it would just be black so I knew something was very wrong."

Living with an illness for two years Austin attributed the symptoms to depression. In 2010 she began having trouble with basic daily functions. She went back to her doctor, where she discovered she was both anemic and iron deficient, a potentially lethal combination. Three or four times a month Austin would sit in a cancer center to be infused with iron over a four hour-period.
"You need iron for every single organ in your body but you can't get iron until you're almost dead because too much iron can kill you as well," she says. "I would be OK — when I say OK I would be able to function enough to get down steps and not black out but then it would just slowly go back down."
At Wake Forest Baptist Health Center, she underwent advanced tests.
"The best of the best did all of this really controversial testing," she says. "I swallowed cameras and they could see big blobs of blood moving through my body but they just couldn't figure out where it was (coming from)."

Austin doctors guessed she had arteriovenous malformation, an abnormal connection between arteries and veins causing internal bleeding that can occur in the brain.

Doctors could never find a source of bleeding or pinpoint where the AVM was located in Austin's intestines despite multiple tests. They had reached an end point.

"I was told at Wake Forest 'we've done everything we can do. You're just going to have to live on iron for the rest of your life,'" Austin says. "And my words to them were 'I can't accept that because I have to practically die in order for you to give me iron.'"
More doctors, treatments and testing followed. She was hospitalized at Park Ridge Hospital for four days. Doctors sent her to Duke University Medical Center. Still, her condition was a mystery. Doctors told her, "You are going to have to buck up, I have a lot of patients who have to have blood transfusions three times a week, getting iron every three months is not so bad."

'Say you need help'

The illness had not only made her feel terribly physically and emotionally. It drove her into bankruptcy. She lost her house and business and moved into a 200-square-foot one-room apartment with a bed and couch.

During this time her daughter Cera McGinn, and her son Austin Hall, and his fiancé, Patricia Feeney, began work on an online fundraising site for people with severe illnesses. They added a photo gallery, music and her story to the website. One crucial part remained.
Her kids "told me 'you have speak and say you need help,' which is very hard to do when you're used to being the caretaker," Austin says. "Finally I hit the send button and it just all went viral."

'Did you just cure me?'

Austin received many letters, donations and notes from friends and strangers, including a childhood friend, Callie Walston, who watched the video on Facebook.
Walston contacted Women Helping Women, the program Pardee Hospital created that helps women get breast cancer screening and treatment and comes to the rescue for other serious medical needs. Walston approached Kim Hinkelman, executive director of the Pardee Hospital Foundation, who immediately put Austin in contact with Dr. James Caserio, an internist.

Hinkelman told her, "We're going to help you but you have to see our doctors," Austin says, "which was a little bit daunting because when you've told your story to eight different groups of medical practitioners and you're already tired it just seemed like, oh no, to start all over again."

After she explained, one more time, the story of the farm animals in Italy, her symptoms and the years of testing, Dr. Caserio had one question. Why had no one tested her stool?
Just before Christmas last year the correct test revealed Austin had contracted H-pylori, a bacteria. If left untreated for even a year longer, doctors may not have been able to reverse the damage, Austin says. After enduring five years of confusion, pain and severe depression, she listened in silence as Dr. Caserio described a diagnosis that perfectly fit her circumstances and her symptoms. It felt like the last scene of a "House" episode. Stunned, the patient had one question for Caserio: "Did you just cure me?"
After a month of a powerful antibiotic drug cocktail, Austin's medical tests came back clear of the bacteria. Ten months after the correct diagnosis and treatment, she remains bacteria free and hasn't required an iron infusion since last December, right before she started seeing Caserio. She recently had her gallbladder removed because it made her constantly nauseous, likely from the amount of time she lived with the bacteria.
"Food through this whole thing because I had this bacteria covering my stomach was always a problem and sometimes I had to drink food for months at a time," she says. "Anybody that's into juicing, I'm sorry, it's like eating lawn cuttings. When you want food you want food."

A cape of medical bills

Austin is grateful that Women Helping Women embraced her when so many medical providers had tried and failed to find out what was wrong.
"I'm doing really well and, in my mind, had I not been swept up by Women Helping Women, I probably wouldn't be alive," she says. "I've been blessed with super great friends that leave their phone on at night and call but really it is your battle. It's kind of you against your disease. When someone steps in like Mrs. Hinkelman and Dr. Caserio and all the women and the people that are behind the organization it makes a huge difference."
The organization made a video of Austin's story that will play during Women Helping Women fundraising events this week —a dinner on Thursday and a luncheon on Friday. Her story fits this year's theme of "strength, hope and courage."
"I built a cape out of my medical bills and on one side of the cape is my life before the illness happened and on the back of the cape there are pictures of Dr. Caserio, Mrs. Hinkelman and my diagnosis outlined in gold and the clasp is the iron drip that used to keep me alive," she says.
The cape will be on display at the fundraiser, and Austin will be a living, breathing example of the organization's commitment to rescuing women from severe, even life-threatening conditions.
"Her story was a little bit different," Hinkelman says. "When we started the program 18 years ago it was specifically to pay for mammograms. Several years ago we decided we should be about any health issue. Jackie's story personally touched me when she talked to me the first time because she was at the end of her rope. She had nowhere else to go. That's why the fund is there, for people like Jackie."
Austin has no doubt that Caserio's treatment and the Pardee organization saved her life.
"I think I'm cured, personally, and I think that as soon as (my body) calms down from surgery it's going to be a whole new story," she said. "A new story, a good story."

For more information about Women Helping Women or to buy fundraising tickets visit www.pardeehospital.org/foundation or call 828.696.4666. To contact Jackie Austin, email skintrue@gmail.com.