Tatiana Neuser-Bostel

Heart-lung transplant

Tatiana’s story is rare because three years ago she met her donor family.

“We have all become good friends.  In fact, they refer to me and my husband Stephan as being part of their family.” 

In May 2007, Tatiana became the second person to have a heart and lung transplant performed here in Perth.

Since then, her life has become very active.  Tatiana returned to part-time work for a few years, and she and Stephan have travelled to Europe three times. Just recently she   decided to do something different, and has again taken up her childhood desire to learn the piano.

“It has been wonderful to re-visit places in Europe with newfound energy and see family and friends in Germany who didn’t think they would see me again after we moved back to Australia in 2003.  Altogether, life is enjoyable on so many levels.”

When Tatiana was a youngster, doctors in Perth diagnosed Truncus Arteriosus with Ventricular Septal Defect (VSD).

“This means instead of the normal two blood vessels from the right and left ventricles of the heart, there was only one. Plus my heart also had an abnormal opening in the septum, which is the wall that separates the two ventricles, which thus allowed blood to pass between the right and left ventricles” she said.

“My parents were told my condition was inoperable. My dad had my medical files sent to doctors in America and Russia.  They all sent them back saying treatment for this condition was unknown territory,” she said.

She spent quite some time in Princess Margaret Hospital over the years with chest infections, but otherwise her parents never wrapped her in cotton wool.

At 18, an elderly friend of the family asked Tatiana her age.  “That’s lovely dear – they didn’t expect you to live past 17, did they?” Her parents had protected her from that news for all those years.

At 20, Tatiana started seeing an RPH cardiologist Dr Krishna Somers. When he sought overseas advice about her case, he was told he was doing a marvelous job keeping her alive in a stable state of health, but there was no treatment available other than medication.

Though Tatiana travelled overseas extensively, she decided not to have children, given the danger during pregnancy and the energy needed to care for a child.  “So, I have enjoyed other people’s children over the years.”

She met her husband-to-be Stephan in 1992 and they married a few years later. Initially they lived in Perth, then Germany for four years.

By then, her health had declined. She had developed a form of pulmonary hypertension called Eisenmenger Syndrome, caused by her untreated heart condition. Put simply, living was causing more and more pressure on her lungs.

In 2004,  her cardiologist suggested transplantation.

“My immediate reaction was ‘no’.  The idea of being opened up like a lemon really put me off. But when you realise your health is on the decline, that your days are numbered, and with Stephan by my side and so much to live for, it was the only option.”

Tatiana was listed for transplantation in July 2005. However her heart condition was causing ill-health, a build-up of fluid and multiple hospitalisations. She was too ill for surgery and was taken off the list for a few months.

In December 2005, she received a call from RPH about a potential donor. But her kidneys were not working properly, and the effects of the blood thinners could not be reversed, so the transplant could not go ahead. She was taken off the list again – this time supposedly for good.

“Instead of falling into a heap, I spent 2006 building my health and fitness. It was up to me to move myself into a position where I might hopefully be reconsidered for a transplant.”

While her fitness improved, she was in hospital again and again for cardiac failure.  An RPH cardiologist Dr Gerry O’Driscoll tried a different approach to thin her blood, by blood-letting. This was a major breakthrough. Her kidney function improved and she was taken off Warfarin, allowing her blood to return to normal levels of viscosity – which is essential for surgery.

“Thanks to the new treatment and my improved “fitness”, I was ecstatic to be re-listed in November 2006,” she recalls. 

In May 2007, Tatiana received THE call from RPH about a potential donor and she became the second person to have a heart and lung transplant performed here in WA.

“I consider myself extremely fortunate in many ways.  The generous decision of the donor family to make organs of their loved one available was paramount.

“Only combined with the world-class skill and confidence of the surgical team at RPH, headed by Rob Larbalestier, – who accepted my case and conducted the operation with absolute perfection -, and the competent and passionate care by all teams involved, before and after surgery, makes such a positive and successful outcome like mine, possible.”

Around the corner from Tatiana’s house, there is a mail box.

“Before my transplant it was easier to jump in my car and drive around the block. When I walked, it would take me 15minutes and by the time I got half way back I was too tired to keep going. Now I can stroll there and back in about four minutes.”

Listen to her donor’s story

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