Such bravery in adversity Waiting for a transplant Herald photographer Janie Barrett follows Tianna Formosa and her family as she waits for a life saving heart lung transplant. PT5M15S http://www.brisbanetimes.com.au/action/externalEmbeddedPlayer?id=d-28a6u 620 349 October 26, 2012 When I first met Tianna Formosa, she could have been mistaken for any normal 16-year-old, trying to get on with life. Except there was one major obstacle in her way, a hurdle that is virtually impossible for any of us to imagine. She was on hold for a life-saving transplant operation. I had arrived that day in 2011 to take pictures at a photo shoot organised by Transplant Australia, the aim being to document the journey and emotions that go hand in hand with waiting for that all-important call. I remember being taken aback by the overwhelming restrictions under which Tianna had to live her life. Her fate was out of her hands. To some degree she was a prisoner. She couldn't leave Sydney, she couldn't go anywhere, in case the phone rang. With her that day was her "mentor," Jessica, a girl who had undergone a successful organ donation and who was able to warn Tianna about what to expect, emotionally and physically. After a short walk along the beach to take photos, Tianna became breathless and her skin had turned blue - something that had caused her mum to affectionately nickname her "my little Smurf." Happier times: Tianna Formosa (left) with her mother, Melissa Buller. But Tianna didn't complain. A smile remained on her face always. This was her. Strong, courageous. For the next 18 months, I photographed Tianna and her parents, witnessing firsthand the stress and anxiety that hung over the family as they collectively waited for news that there was an organ donor available. In that time, her health gradually deteriorated. Then, in August 2012, the phone call came and she was rushed into theatre. In what has to be one of the most incredible events I have ever witnessed, I stood there in the operating theatre as the surgeons performed the heart-lung transplant. An operation that we were told would last about 12 hours was over in seven. After it had finished, I followed the surgeon out of theatre to the waiting room where Tianna's parents were waiting. He informed them the operation had been a success. They were naturally eager for as much additional information as possible. Battler: Tianna during one of her many stints in hospital. The atmosphere that day was one of hope, excitement and jubilation as we dissected the entire day, from the operating theatre and how the doctors had seemed, to what the nurses were doing throughout. I described the calm atmosphere, the complete intensity of focus, how every individual knew their role and how it appeared as smooth and seamless as an operation could be. "There was no panic, no stress," I told them, "just quiet, intense concentration from every member of the team." I tried to articulate how it felt to witness what was supposed to be a life-saving operation. For about two years, the transplant had been Tianna's holy grail. It felt like I was witnessing something spiritual, a man-made miracle. But tragically, last month, one day short of her first-year anniversary, a long series of complications finally took their toll and Tianna died in St Vincent's transplant unit. After surgery, she had spent two months in hospital, undergoing more operations as she was treated for rejection and infection. Her vocal cords were damaged by the breathing tube that had to be reinserted every time she was put under. When Tianna finally made it home, she was weak, vomiting and could only whisper. In February, her body began to reject the organs and, on July 5, she was put back on the waiting list for another transplant. Unfortunately, Tianna's weight continued to decline, dipping as low as 28 kilograms. Her family were informed she was by now so malnourished and her body so deconditioned that it was impossible to transplant again. But still they never gave up hope. Given the excitement and jubilation that I witnessed last year, I still find it incomprehensible that I was attending Tianna's funeral along with hundreds of family, friends and other well-wishers who were touched by her sweet nature, her story and, not least, her courage. Tianna had never been able to live a normal life but, despite this, she lived her life as fully as possible, studying photography at TAFE, loving her music and watching bands with her friends. Most of all, she loved her family. She told me how much she appreciated them, and how close she was to them, especially her gorgeous little baby brother, Addison. She was also a huge rugby league fan, and in a fitting tribute, her parents and other mourners wore her beloved Wests Tigers football jersey at her funeral. I can't speak more highly of the brave young woman I came to know, and her loving, supportive family. Transplant Australia chief executive Chris Thomas described Tianna as being one of the most inspiring young people he had ever met. We would all like to think that in every case, transplantation is a second chance at life and these people will go on to live for many years. Sadly, Tianna's passing shows us that receiving a transplant is the start of yet another journey and even though our ... transplant units can accomplish amazing things, sometimes it is not to be.