For Sarah Mulligan, 30, Cairns, December 17, 2015 marked her final dose of Soliris (eculizumab) and ever since, she has undergone consistent monitoring to ensure he disease does not flare again.
The medical receptionist and bride-to-be is now in good spirits and looking forward to what her future holds.
“Since coming off Soliris, I’ve been stable. I undergo blood tests every two weeks to ensure there is no sign of an aHUS flare,” Sarah said.
“My kidneys still aren’t great, and my creatinine levels are high, but my LDH (Lactate dehydrogenase – an enzyme that helps the process of turning sugar into energy for cell use) levels are stable, which means I no longer fit the criteria to access Soliris.”
Further to halting treatment with Soliris, the double lung transplant recipient (a result of her cystic fibrosis), has seen her anti-rejection medicine levels decreased, which she has since been informed, may help to prevent another aHUS flare.
“My aHUS was triggered by my anti-rejection medicine. So my doctors have worked to lower the volume of my anti-rejection therapy. But I’m always aware that this is a double-edged sword, because if they decrease this medicine too much, it could lead to a rejection of my lungs,” said Sarah.
“Right now, I’m feeling good though. I am mostly stable and I feel well.”
Due to her improved state of health, Sara celebrated her 30th birthday in March this year, with her fiancé and friends in Byron Bay, NSW, at the Blues Festival.
More recently, Sarah has adopted a puppy, and is preparing for her wedding, whichi is scheduled for October this year.
“Being healthy has allowed me to make a lot of progress in preparing for my wedding.
“Right now, although I’m doing well, I’m still extremely passionate about securing Soliris for every Australian who requires access to it in order to save lives.
“Along with the aPSGA, I don’t want to give up on the other Australians who need access to Soliris. I want to ensure that all Australians who require this life-saving medication can access it,” said Sarah.
“I want to keep up the good fight, because I know how valuable Soliris was to my health. And should there ever come a time when I need to access Soliris again, I would hope that it is available for me.”