19 Apr Every Healthy Day Honors Frank’s Liver Donor
Peterborough’s Frank Carlus has not surprisingly become a huge advocate of the Australian Organ Donor Register.
Twenty-two years ago, a donor liver saved his life. Now 64 years-old, Mr Carlus was in his early 30s when he found out he had Hepatitis C (HCV) and that the virus would cause irreparable damage to his liver.
His sense of gratitude towards the donor of his new liver is overwhelming to this day – as is his elation after becoming one of the first people in the world cured of HCV years later.
Mr Carlus is the Board Chair of Timboon and District Healthcare Service and he has shared his story to help mark World Liver Day, held on April 19th.
Walking his beloved dog Skip along the beach at Wild Dog Cove in Peterborough, it is never far from Mr Carlus’ mind just how lucky he is to be alive to enjoy his retirement.
He was a fit and healthy young man living an active lifestyle when a routine visit to his GP for a blood test turned his world upside down and signaled the start of a health spiral that saw him hanging onto life by the barest of threads.
“My diagnosis that I had Hep C came as a total shock, but I was young, my career was a priority, I wanted to travel and there was family, sport and other things that pushed the diagnosis to the back of my mind and so I got on with life,” he said.
“The most likely cause of the Hep C was the fact I was born and immunised overseas in Spain. Subsequent to my diagnosis, my family got tested and my younger sister and my mum tested positive and my older sister carries the antibodies as evidence she had contact with the virus as well.
“Back in those days, often syringes and vials of vaccine were shared – not needles – but we can only assume that the drawing of immunisation doses from the same vial with the same syringe was the likely cause of my transmission as a child.” Mr Carlus said life went on, but about seven years after his HCV diagnosis symptoms started to take their toll and he was referred to the Alfred’s Liver Clinic.
A year later, despite medication and other treatments, his liver was cirrhotic and the subject of transplantation came up.
“That was a bit of a shock at first. I thought, ‘surely there is another solution to help me beat this’ but there wasn’t and I was placed on the transplant waiting list,” he said.
“My liver and my health continued to deteriorate, I could no longer drive or do anything involving even minor exertions…with the support of my wife and employer I continued to work as long as I could.
“Finally, in November 1999 I got the call – my turn had come for a transplant. With great trepidation, my wife, daughter and I made our way to the Austin and the pre-op process started, but within a few hours the bad news came.
“There were some issues with the donor liver and it was not suitable for me. It was the middle of the night and we were sent home.”
Mr Carlus spent the majority of his career working for government in the health sector and said he always maintained confidence the process would save him.
“Several weeks passed. My health was terrible – I had leg cramps, poor digestion, esophageal varices, internal bleeding, constipation, and terrible encephalopathy.
“I hadn’t lost hope, but I was hanging in there by the barest of threads. Another false alarm was shortly followed by the real thing in early February 2000. I was euphoric on my way to theatre – I thought that one way or another my suffering was coming to an end.”
Mr Carlus said he spent 36 very disorientated hours in intensive care after the transplant before being moved to a completely isolated ward to prevent infection.
HCV was still in his body and with a reduced immune system it attacked his new liver quickly which Mr Carlus said tested his resolve.
“We won the first decisive battle though, but not before my new liver had been severely damaged. By week six post-transplant I was on my way home with a new sense of hope though,” he said.
“My health was largely restored over time, I resumed work, looked after myself as best I could and tried to be a model post-transplant patient. My sense of gratitude to my donor and his family continues to be overwhelming.”
More than a decade later, Mr Carlus and HCV sufferers around the world continued to wait for a cure. All of a sudden, Mr Carlus became aware that there was one in sight.
“In late December 2014 the good people at the Austin came to my rescue again. I was accepted into a compassionate drug program. I subsequently became free of Hep C and that treatment the first batch of us trialled was later approved for general use around the world,” he said.
“Not having Hep C took a load off my mind in terms of no longer feeling that ongoing threat to my life. My medical people tell me my overall health is now on par with other 64 year-old men, which is just the best news.
“Hopefully I can continue to pursue a lifestyle that honours my donor, the transplant team and everyone who supported me and encouraged me through the ordeal.”