A Medical Mystery – Susan and Mark’s Story
On a holiday in sunny Queensland, Susan Doyle’s life was turned upside down when she discovered an unexplained lump on one of her legs.
Returning home to have it removed, she grew more concerned after it continued to grow for six months following.
After conducting numerous tests, doctors remained perplexed until a chest x-ray suggested lung cancer.
“They kept taking bits and pieces of my lung and testing them but they couldn’t find anything, even though they knew something was there,” Susan said.
After more tests Susan was referred to Professor Toby Coates at The Queen Elizabeth Hospital, where she was diagnosed with Wegener’s disease.
Wegener’s is an extremely rare disease, where lesions form on key arteries in the body and in Susan’s case it set itself up in the kidneys before sending a secondary host to the lungs.
Susan’s kidneys were failing as a result of the disease; a transplant was inevitable.
“By the time Professor Coates did his last test on my kidneys they were probably functioning about 13 per cent. I was already feeling really bad and then they told me I was going to need a kidney transplant,” Susan said.
Susan and Mark’s children volunteered to become donors but it was Mark who was adamant he would be the one to donate a kidney to his wife, despite not being a positive match.
“I was never a match. We knew her blood type would set up an antibody against mine,” Mark said.
“As soon as the kidney goes in there the antibody she has in her blood would attack the kidney and kill it.”
This meant Susan’s blood had to filter out the two key antibodies that would reject her husband’s kidney before conducting the transplant.
Fortunately, thanks to the expertise of Professor Coates and his team, the transplant was a success and Susan’s new kidney from Mark began working almost instantly.
“The kidney started working straight away and I immediately felt better,” Susan said.
“Professor Coates has been absolutely fantastic. I love him to death. He told me from the word go – he said I’m never going to lie to you and he never has.”
For Susan there will always be a risk of her Wegener’s reappearing and every two months she must have tests to monitor her blood levels.
Today, both Susan and Mark stress the importance of improving people’s awareness about kidney issues, and how vital medical research is in this area.
“People go around with kidney trouble and they don’t even realise until it’s too late,” Susan said.
“I would encourage everyone to get checked regularly,” Mark added.