Luci was in the prime of her life. At 28 years old, she had moved to Wales with her long-term partner to begin a new adventure. Nine months of fun and fresh experiences went by before Luci noticed herself feeling extremely weak. Trying to shake it off, Luci kept living her busy lifestyle until one morning she couldn’t even move from the bed to the bathroom. Luci raced to the emergency room and three weeks later was diagnosed with Severe Aplastic Anaemia. This is her story.
Luci was in the prime of her life. It was 2014, she was 28 years old and had moved to Wales with her long-term partner to begin a new adventure. Nine months of fun and fresh experiences went by before Luci noticed herself feeling extremely weak. Trying to shake it off, Luci kept living her busy lifestyle until one morning she couldn’t even move from the bed to the bathroom. It was then she knew something was wrong and she raced to the Emergency Department (ED) at the local hospital. The doctors immediately placed her into an isolation room, and told her that her platelet count was 7 – it should be between 150 and 450.
Luci was told she had Leukaemia and was transferred to a specialist hospital. The doctors quickly conducted a bone marrow biopsy, and she relied on regular blood transfusions to survive. Three weeks later, she was told it was not Leukaemia, it was Severe Aplastic Anaemia (SAA) – a common misdiagnosis for many with a Bone Marrow Failure Syndrome.
“Within a month, I went from living a normal healthy life to a SAA diagnosis. It is already a rare condition, but even rarer for my age. I just couldn’t understand how this happened to me.”
Alone in Wales without her family, her Dad quickly flew over from Australia to be with her. Then they had a decision to make, to stay in Wales for treatment or move home to Australia. Luci chose Australia.
Back in Sydney, Luci was treated with immunosuppressive therapy and steroids. The steroids had an extreme effect on her body and she became a ‘steroid-induced diabetic’ and also suffered significant weight gain. This was incredibly confronting as she had always been a small person, and Luci struggled to deal with her new reality.
“I was supposed to be living in Wales with plans to get married and have a family, but now my life was at risk, and I started experiencing crippling anxiety and obsessive-compulsive disorder.”
Luci sought the support of a psychologist, and six months later was placed on anti-depressants to help manage her mental health.
Luci was told to ‘wait and see’ how the treatment went. She tried to secure a part time job, but it was too hard to sustain as she continued to be reliant on blood transfusions. She was in and out of hospital, with the smallest of colds requiring emergency care. Life was so very different now.
In January 2016, Luci was referred to a new doctor who immediately advised that she required a Bone Marrow (Stem Cell) Transplant. Luci was now 30 and all of her friends were getting engaged and planning families. She desperately wanted to have children, so the decision was made to freeze her eggs. Luci went through two rounds of egg freezing to preserve her fertility post-transplant. By September, Luci could not wait any longer and fortunately an overseas bone marrow donor was identified with a 10/10 match. The transplant went well, and although the pre-conditioning and chemotherapy caused Luci to lose all of her hair, her weight started to decline and she began feeling much better. But, despite Luci’s health improving, sadly her relationship had started to quickly deteriorate.
Then, just after her 31st birthday – day 82 post-transplant – Luci couldn’t swallow. She went straight to the ED, but was given steroids and sent home. The next day, she was in indescribable pain and rushed to her doctor. Again, no issues were identified.
“I was so scared and knew something serious was wrong. So I went to my family GP who had known me for years – they sent me straight back to the ED and I was hospitalised for more tests. No-one knew what was going on, it was incredibly frightening.”
That same week, Luci’s long-term partner, who she had planned a family and a future with, moved out.
Whilst awaiting the test results, Luci was put back on steroids and sent home for Christmas. Two days later, she went back to the hospital and was finally given a diagnosis – she had Post Transplant Lymphoproliferative Disorder (PTLD, a life-threatening complication post-transplant). Luci had to undergo chemotherapy to treat this new condition, along with continuing the steroids. In April 2017, Luci finished her chemotherapy treatment and started to recover. She tried to resume some semblance of normality, but due to ongoing transfusions, blood tests and doctors’ appointments, she was only able to find work three days a week.
Two years later, Luci was well enough to travel and in 2020, she was given a clean bill of health. Luci is now thriving and enjoying life in Brisbane. She has committed herself to supporting others and has a successful marketing career in healthcare and patient advocacy.
When thinking about Maddie Riewoldt’s Vision and the impact the organisation has had, Luci shared:
“I remember when Maddie’s Vision launched. To hear that Maddie and I had the same diagnosis was astonishing, as I didn’t know anyone else who had SAA. If the Tele-Support Service* was available when I was going through my diagnosis and treatment, the impact would have been enormous. I ended up seeing a psychologist for the entire duration of my treatment. To have access to a free service with a nursing expert would have been amazing. I am so grateful that Maddie’s Vision is here, shining a light on Bone Marrow Failure Syndromes and working to make a difference for patients and families across Australia.”
*The Maddie’s Vision Tele-support Service launched in 2019 and Peer Support Program launched in 2023.
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