After months of treatment and a heart and double-lung transplant, Tianna Formosa was hopeful of enjoying a bit of normality this weekend.
''I am looking forward to going out for the first time this weekend to my friend Cameron's birthday, and seeing a lot of my friends for the first time since my transplant,'' the 18-year-old told The Sun-Herald on Thursday.
''I'm finally home now with my mum, dad and baby brother. My hopes are long-lasting health and finally being able to be a normal teenager and do everything my friends do.''
Tianna is exhausted, sore and severely underweight after more than a month in intensive care. She is anxious, too, because there have been several speedbumps on the road to recovery.
The most serious setback came weeks before her successful transplant. Tianna and her parents were called in about 10pm on a Sunday because a donor had been found and the surgeons were ready to operate. She was prepared for surgery about 6am. Unfortunately, the donor organs were found to be unviable and the transplant was aborted about 8am on the Monday.
Even after her successful transplant, the problems continued. There were complications that led to three more operations in a fortnight.
Her mother, Mel, is drained. Her fatigued voice seems driven only by some primal strength. The years have been been daunting since Tianna was diagnosed as a toddler with Eisenmenger syndrome, a congenital defect affecting blood flow from the heart to the lungs. Nevertheless, from the moment the emotional call came in August that a suitable organ donor had become available, Mel and her husband, Adam, have stayed by their daughter's bedside, tip-toeing with her through every step of a life-and-death marathon.
But it was last week that the best stage yet in Tianna's recovery began. She waved goodbye to the brilliant surgeons at St Vincent's Hospital and went home with her parents. Many visits to doctors lie ahead on a long and possibly bumpy road. But, right now the family is daring to celebrate.
''Just to have her home with us,'' Mel says, ''it's the one thing we've wanted for a long time, to have her home and be healthy. Every day I've thought about it.''
Tianna's story of extraordinary physical and mental resilience will be all too familiar to those who have undergone a transplant or supported a loved one through the process. It's a story of trepidation, desperation, complication and, hopefully, success.
The Sun-Herald has followed Tianna's story since the then 16-year-old was told bluntly by a specialist that she would die within five years unless her heart and lungs were replaced.
When Tianna was 18 months old doctors found two holes in her heart and two blocked arteries, faults that left her breathless and with a blue tinge to her skin. Over the years the condition worsened, leading to an ever-lengthening list of symptoms.
''Walking is really hard,'' Tianna said 18 months ago. ''I get heart palpitations, chest pains, nose bleeds. I get light-headed and get leg cramps and back pain. I'm in and out of hospital. I don't have much of an immune system.''
The illness had affected her social life, as it became hard to keep up with her friends.
''Sometimes, they end up carrying me,'' she said. ''I feel like I drag them back a bit because they have to walk slowly with me. I tell them to walk on and I'll walk just behind them at the back of the pack. It takes a toll on your self-esteem, trying to keep up with them and seeing everyone do stuff that you can't.''
Major surgery was necessary and the Ingleburn teenager became one of the 1700 Australians on waiting lists for organ and tissue transplants. She also became a face of the Journey of Hope campaign, aimed at getting Australians to discuss the issue and to encourage more people to register as organ donors. The campaign by Transplant Australia endeavours also to attract more funding to support people who are on waiting lists, organ recipients and their families.
Australia has one of the lowest organ donor rates in the developed world. Last year 309 Australians donated organs. Close to 6 million Australians are on the Australian Organ Donor Registry, but only 58 per cent of relatives allow organ and tissue donations to proceed.
Transplant Australia's chief executive, Chris Thomas, said many people who signed the donor registry were frustrated that families could overrule their wishes.
''That's why it is really important to have that conversation about organ and tissue donation at a far happier and healthier time,'' he said. ''Have it around the barbecue. Get the message to your family.''
For Tianna, time was running out. She went on to the transplant recipient list on November 9, 2010, but the wait was hard to bear. She became tense every time the phone rang. Unlike most 16-year-olds, who wait for calls from friends going to the movies or shopping, she was waiting for a call to tell her a heart and lungs were ready to be implanted. The TAFE student kept her mobile phone within arm's reach 24 hours a day.
''When the phone rings and the screen says it's from a private number, I'm a little bit scared it's going to be them [St Vincent's], and a little bit excited, too,'' she said at the time.
Jessica Sparks, a double-lung transplant recipient, befriended Tianna and offered her support and advice during the waiting period. The university student from Wollongong had been told she had a week to live before her operation.
''I told Tianna that you do get to a time where you feel that things aren't going to improve and you think, 'How can I possibly get better?''' Sparks said.
''But she has got to hang in there and she's got to know that things get unbelievably better.''
Unlike Jessica, it took a long time for Tianna's next step to unfold. In the middle of last year Mel told of the difficulties of their waiting game.
''As time has gone on - it's been nine months now - I think we've had to learn patience and not to expect things to happen the way we expected,'' she said.
''I guess it all came from the excitement of knowing we actually made the list. We have been given a chance. Now it's the waiting game.''
In August, the game ended when Tianna was given three organs. However, just two days later, Mel received a call from the hospital saying that Tianna would have to return to theatre as a blood vessel was pressing on her right lung, causing swelling from her chest to her head. Surgeons removed part of the lung in a five-hour operation.
That afternoon, Tianna again underwent surgery in a two-hour procedure to repair an internal bleed caused by her sternum bone. Then, two weeks later, it was discovered her left vocal cord had been damaged during one operation and her neck had to be cut open in a fourth operation. Then there was an infection at either end of the transplant scar in week two. Mel said ominously: ''She wasn't doing too well around that time.''
On October 11, when The Sun-Herald checked in again, Tianna's vocal cord problem stopped her from speaking. But Mel said: ''She's doing better. There's still things to repair before we get her out of here … But the upside is she's had the transplant and is still here with us. It's fantastic.''
Tianna was tired and weighed just 38 kilograms, Mel said. ''But when you look at her now compared to how she looked before she came in, there's a massive difference. Her skin was blue before … but now she's completely normal. There's colour in her fingers, toes, her face. It's a huge difference.'' Though Mel says Tianna will keep her old nickname ''our little smurf''.
But for Tianna, one message remains vital: donate your organs.
''For anyone who hasn't considered donating - imagine your life without a loved one,'' she says. ''My life [has] just begun because my donor family saved me … It may be the hardest decision to make, but one that's worth so much to so many families. I'm alive.''
