Olivia’s experience with Aplastic Anaemia

Olivia is a 32-year-old doctor working in paediatrics at The Royal Children’s Hospital in Melbourne and lives with her partner Craig and their two dogs, Ted and Millie. Three years ago, she noticed unusual bleeding and bruising, beginning with bleeding in her mouth and worsening over time.  As a busy medical student, Olivia pushed these symptoms to the back of her mind. When her symptoms persisted and a petechial rash caused by bleeding under the skin appeared, she quickly saw her GP who immediately rushed her to the emergency department.

Olivia spent the next three weeks in hospital. Initial blood tests raised concerns and the following day a bone marrow biopsy confirmed her diagnosis of Severe Aplastic Anaemia. With her immune system compromised, Olivia had to remain in hospital, requiring frequent blood and platelet transfusions to keep her alive.

Despite her medical background, Olivia had never heard of Aplastic Anaemia and was shocked by her diagnosis. With no family history of the condition, she felt scared and isolated, feeling uncertain of her future both as a doctor and as a young woman. However, she found resilience in moving forward whilst grappling with the shift from doctor to patient.

“There was so much uncertainty, many doctors admitted they didn’t know how best to proceed and consulted overseas experts for guidance. They approach each case individually, without a rule book.”

Olivia spoke openly about her diagnosis with Craig and her Mum, feeling overwhelmed and frustrated at being diagnosed with a rare disease where there was such a lack of information. Her Haematologist soon recommended immunosuppressant therapy (IST) as her treatment plan, however just before the procedure, Olivia was told she may also need a Bone Marrow Transplant. Sadly, none of her three siblings were suitable donors, so she was placed on the International Bone Marrow Donor Registry. To avoid further treatment delays, the decision was then made to proceed with IST.

On her birthday in 2021, Olivia started her IST, entering a gruelling treatment regimen with difficult side effects, including fluid retention, liver damage, and excess iron levels, which posed significant challenges. As she waited for the immunosuppression to take effect, typically a three to six-month process, she learned that her first job as a doctor would have to be postponed for a year.

Navigating this experience while being immunocompromised during the COVID-19 pandemic heightened Olivia’s anxiety about interacting with others, taking a toll on her mental health and that of her partner and family. Olivia’s Mum then reached out to the Maddie’s Vision Tele-Support Nurse, who offered crucial support as she navigated the challenging journey of helping her daughter.

Gradually, Olivia’s condition improved and by May 2023, she was no longer on any medication. Although she will need lifelong monitoring, she feels incredibly fortunate that her situation did not escalate to a transplant.

As Olivia’s blood counts returned to normal, she faced new challenges, particularly regarding her dream of starting a family with Craig. The path forward was filled with both excitement and apprehension as they pursued these hopes together.

“There’s a risk my Aplastic Anaemia might relapse in pregnancy, so it has been difficult to make decisions about starting a family.”

Olivia and Craig spent months consulting with her Haematologist who was unable to provide conclusive answers due to a lack of clinical data and knowledge about the risks associated with pregnancy after Aplastic Anaemia.

“I can’t express enough gratitude to the Tele-Support Nurse for her incredible support during those months. She guided me through the clinical advice I received, helping me understand and navigate the risks associated with pregnancy. Thanks to her, we were able to make the most informed decision possible based on the information available.”

Reflecting on her experience, she credits her resilience to the unwavering support of partner, Craig, family and friends, emphasising the importance of taking life one day at a time. She encourages others facing similar struggles to focus on the present and seek support from the vital services that Maddie’s Vision offers.

Inspired by Olivia’s journey, Craig is now pursuing studies in Haematology, hoping to contribute to advancements in treating Aplastic Anaemia and related conditions. And just recently, Olivia has shared the wonderful news that they are expecting their first child!