Tony's Story - A Liver Recipient

My living life to the full is the best way I can think of to thank the donor and their family.

Flag-bearer-348 I received my liver transplant in July of 1988. Unknown to me and my family, I had a very rare, genetic (autosomal recessive) illness called Wilsons disease. Where both parents are carriers of these abnormal genes there is only a one in four chance of contacting this disease. No-one knew our family had these abnormal genes until someone noticed the whites of my eyes were yellow about six months after my 25th birthday (just a few short months prior to my transplant). This meant that, unknown to me at the time, I could not metabolise copper from any ingested food and drink.

Fortunately for me, until I was 24 years of age, I lived in houses with galvanised iron pipes, in Tasmania and Adelaide. This minimised my exposure to copper. I moved to Sydney in May of 1987 (ironically to study birth defects) and it is here that I first started living in places that had copper pipes. Less than 12 months later, on April Fools Day of 1988, an aunt first noticed that the whites of my eyes were now yellow. This was the first sign that all was not well. Within a few days, it was now quite obvious that my eyes were really yellow. I went back home to Tasmania to recover from my supposed infection.

After several weeks, my skin and eyes were now very yellow, such that I appeared to almost glow. On seeing my family general practitioner, it was quite amusing to see the jaw of my doctor drop, when he first looked at me with my sickly bronzed look. Despite this, I was still feeling quite well. My disease had progressed to a stage where my breath continually smelled as though I had eaten a large amount of garlic (a well known sign of liver failure). My body was trying to rid itself of toxic products. As I was getting bored sitting around, I decided to return to my PhD studies in Sydney. In mid June 1988, I was to be seen by liver specialists at Royal Prince Alfred Hospital. By that time, I started to feel unwell and was admitted to hospital immediately. After three weeks, the most common causes of my illness were excluded. Then an unusual presentation of

Wilson’s disease was considered as a diagnosis. I was relatively old to have Wilson’s disease (possibly it was the galvanised iron water pipes that saved my life to that stage). And I was also missing the cardinal diagnostic sign of Wilson’s disease, the Kayser Fleischer rings (the deposits of copper in my eyes).

On July 2nd 1988 I sought to get my parents together with my uncles and aunts who lived in Sydney, for family meal in Chinatown. My feet were swollen (due to liver failure) and I couldn’t fit into any shoes. Mid winter and

I am wearing no shoes. That night I had a terrible stomach pain (spontaneous peritonitis), with the worst pain I have ever felt. I was blacking out, my peripheral vision going and having a smaller and smaller visual field. This is my last memory prior to my waking up after my transplant.

However, I was told that I did awake the next day, and carried on "intelligent" conversations, prior to an operation for peritonitis - but I remember nothing of this, even to this day. It was only weeks between the first signs that anything was wrong and I was in a deep coma, with only days or possibly even just hours to live. I was in the Intensive Care unit and tubes were coming out of me everywhere.

Tony-in-a-coma-348 I was given only 24-48 hours to live when the doctors decided to risk giving me a liver transplant when a donor liver became available. Liver transplants in Australia had only been performed for two and a half years.

Apparently, this was the first time someone in Australia was to be given a transplant while in a coma. At the time of going into surgery, I had fixed and dilated pupils.

While I was in a coma I experienced the "light at the end of a dark tunnel" and a few other memories sometimes reported by people who have been all but dead.

The transplant was a success. I awoke officially 24 hours after surgery after being in a deep coma for ten days prior to transplant. I had lost 30-40 kilograms in weight. But I remember nothing of the first week after transplant, and most of my time in the intensive care ward. I spent several weeks in intensive care and was later transferred to the transplant and general medical wards. I had no strength. I could not even roll over in bed. It was two and a half months before I was even able to climb up one stair unaided (albeit with a railing).

I was eventually discharged from hospital with constant checks for another two months before I was able to go home to Tasmania where I promptly caught pneumonia. I then spent another four weeks in Launceston

General Hospital recovering from this. My strength was slowly returning, and I returned to Sydney to restart my studies, and return to a normal life. In January 1989, I even went back to skydiving again, only six and a half months after transplant.

In the many years since my transplant, I have had an active role in Transplant Australia (formerly the Australian Transplant Sports Association) and have competed in every National Transplant Games (although I only won one bronze medal in my first two games, combined). I have also been fortunate enough to represent Australia in quite a few World Transplant Games. In London, Canada, at the XVth World Transplant Games in 2005, I was given one of the greatest honours by being chosen as the flag bearer for Australia. I also play field hockey as a goalkeeper with a normal team.

Tony-post-transplant-skydiving-348 I completed and was awarded my PhD in 1992. I even travelled around the world after finishing as a student, and began my working life as a medical researcher. Few people, including medical practitioners, can tell that I have had a liver transplant, as I appear perfectly normal. I do normal things (except I don’t drink alcohol - I was never a big alcohol drinker and I never smoked), and best of all, I enjoy the gift (of life) that I have been given. I am extremely thankful that the donor’s family considered and consented to organ donation when their relative died. I have written to my donor family through the Red Cross to thank them, but of course no words are enough. My living life to the full is the best way I can think of to thank the donor and their family.

Every year, on the anniversary of my transplant, even though I don’t know the name of my donor or what they looked like, I remember my donor and I thank the family for their decision.
Tony