Alexis Smith received a precious gift when she came to Australia
Alexis Smith, 22, came to Australia to study. But what started as an academic adventure quickly escalated into a nightmare medical ordeal. She came to learn but left with a piece of Australia that saved her life, and changed it forever.
Alexis recounts the nightmare-like experience, including her sudden shift in condition and the phone call that followed: “My parents got the call at 2am that I was in acute liver failure and only had 6-10 hours left to live.”
The young student chose Sydney as her study abroad destination for a few good reasons: she has slept with her stuffed koala Eucalyptus since she was nine years old; Australians speak English; and she wanted to take a second chance on the handsome Aussie she had met a year before in New York City and hadn’t stopped skyping since.
A bright-eyed all-American girl, Alexis is passionate about television and looks up to Tina Fey. She smiles often and calls laughter her favourite medicine. On August 11, 2011, the 20-year-old Boston University junior arrived in Australia looking forward to sunshine, nightlife, new friends, new courses, and explorations—not to mention reuniting with her Aussie boy. She left home excited by the promise of a semester of adventure abroad. The farthest she had ever been from her home in Connecticut was Michigan. Little did she know that in four short weeks she would be told she might die.
A healthy Alexis with a real koala
Over the months leading up to her trip to Australia, Alexis had begun to experience unexplained weight gain, a problem her doctor in America attributed to pre-departure stress or thyroid issues. She joined Weight Watchers and left America in the fall of 2011 with a clean bill of health. When she stepped off the plane, Alexis noticed her ankles were swollen. She assumed it was a case of jet lag.
She spent the next few weeks in constant pain. The swelling continued from her ankles up her legs and all the way to her hips. It became painful to stand and difficult to stuff her feet into shoes. Still, she brushed it off. “I kept it to myself only making mere mention of it to my parents in emails.”
After three weeks of suffering, elevating her feet as she slept, ate, and sat, rejecting offers to go out or explore the city, unable to fit into any of her clothes or shoes, Alexis finally collapsed one day while crossing a busy Sydney street.
A walk-in clinic doctor checked her for deep vein thrombosis, a common symptom of jet lag, and performed an ultrasound to look for blood clots. But after both tests came back negative, he told Alexis she was “fine”.
Now a month into her trip, she was unable to sleep, walk or eat. Alexis went back to the doctor and begged him for help. “He responded by giving me diet pills for the 50 extra pounds I had put on,” she says. Meanwhile, the swelling had now reached her stomach. “I looked like I was pregnant. I was so helpless and scared.”
The following week she attempted to celebrate her 21st birthday and marked the milestone by having her first-ever alcoholic drink. She figured it might help numb her excruciating pain.
The next morning, she looked horrible and felt weaker than ever. Thinking she might be suffering her first-ever hangover, Alexis sought out a new doctor. That day, she found Dr Sarah Lockley, the woman she now says saved her life. The first thing Dr Lockley said when Alexis stepped into her office was, “Do you always look like this?” By that time, she recalls, her legs were “like a Tempurpedic bed – you press down and the skin would not immediately come back up”.
Dr Lockley ordered expedited blood tests. About four hours later, Alexis received a call telling her that the protein in her blood was low, her billirubin was high, and that the liver team at St Vincent’s hospital was waiting for her.
The next 72 hours would be the most pivotal of her life. She was admitted to St Vincent’s on Monday, September 12, 2011. Two days later, she was transferred to The Royal Prince Albert Hospital where she was told she needed a liver transplant and had to remain patient.
Her transplant operation took place at midnight the following night on September 15. Alexis knows nothing about her donor apart from the fact that he or she was Australian.
As Alexis lay in the operating theatre, her family was told to get on the first plane to Sydney, and that no one could promise what they would find when they arrived. Her family missed everything: the diagnosis, the waiting for a donor, the donation, and the 10-hour surgery. They arrived at RPA Hospital shortly after their daughter was taken into the ICU recovering on a ventilator.
Alexis was diagnosed with Wilson’s disease, a hereditary condition that if not controlled properly with medications and diet restrictions will result in liver failure, and eventual death. There is no cure except transplant.
After six weeks in hospital, with her old pal Eucalyptus by her side and daily sitcoms to make her laugh, Alexis returned home. She went on to graduate from Boston University and is pursuing a budding television career in New York City as well as planning a trip back to Sydney, hopefully she says, by the end of this year.
Team Smith raising funds for organ donation in the US
Last fall, she was honoured as “Champion” by the American Liver Foundation at their annual Liver Life Walk near her hometown in Connecticut. Her team raised over $6000 and she served as the face of the walk. She now advocates actively alongside her younger sister Taylor, who was also recently diagnosed with Wilson’s.
Alexis looks back with gratitude.
“My life was flipped upside down in an instant, “ she says.
“One moment I was well and the next I was in a hospital bed. It was hard to grasp all that had happened and to make sense of it. But I had to see the silver lining – I am alive and was able to save my sister from a terrible fate.
“I went from a girl who would kick and scream and cry if I needed a finger prick at the doctor to a girl who went through a liver transplant all by herself in a foreign country.”
She urges everyone to register as an organ donor. “Let your family know your wishes. It is the simplest and greatest way to leave a legacy.”
Alexis’ case was exceptional: most aren’t as lucky.
She was placed at the top of the emergency list as it was literally a case of life and death and fortunately for her, a suitable liver was available when needed.
According to the International Registry of Organ Donation & Transplantation, Australia is currently ranked 17th in the world. As of June 2013, 1,596 people are on waiting lists in Australia, 180 of these waiting for livers like the one Alexis received.
A total of 1,099 transplants were made last year from 354 donors who gave 1,052 Australians a new chance at life. In their 2012 annual report, The Transplantation Society of Australia and New Zealand (TSANZ) announced that this number of donors and recipients was the highest ever since national records began.
DonateLife, Australia’s government-funded advocacy bureau, reports that organs are given to the person with the greatest medical need who has the best chance of a successful transplant.
Alexis in Sydney with her happy parents
In Australia, family consent is mandatory so confirming your wishes is pivotal. Donor and recipient must be compatible and recipients of the donated organs must be known before the organs are retrieved.
Transplant waiting lists are kept for each transplantable organ: heart, lungs, kidneys, liver and pancreas. A person is put on a transplant waiting list only when they have end-stage organ failure, all other treatments have failed and their medical specialist believes they will benefit from a transplant. Their waiting times depend on the availability of organs and the allocation through the lists. While this is usually between six months and four years, it can be even longer.
In July 2008, the Australian Government implemented a national reform package: A World’s Best Practice Approach to Organ and Tissue Donation for Transplantation. The package dedicated doctors and nurses to 74 hospitals to work specifically on organ and tissue donation as part of the national DonateLife Network that also includes state medical directors, organ donor coordinators and donor family support. The reform allocated over $180 million for measures to significantly improve Australians’ access to life-saving organ transplants.
For more information on organ donation and to register as a donor in your state, visit the DonateLife website.
